Dealing With Interferon Side Effects Patient Stories

Dealing withInterferon Side Effects

Patient Stories

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DEALING WITH INTERFERON SIDE EFFECTS: PATIENT STORIES

Table of ContentsTable of Contents................................................................................................................2

Interferon Side Effects ........................................................................................................4

Introduction .........................................................................................................................4

What is Interferon? .......................................................................................... 5

How do Interferons work? ............................................................................... 5

About Interferon ..................................................................................................................5

Information for non-scientists .............................................................................................5

What diseases does Interferon treat? ............................................................. 6

Interferon Side Effects Stories ............................................................................................71. What was the reason you started taking interferon? ..................................................................................7

2. What was the reason you started taking interferon? ......................................................8

3. When did you start your treatment and what was your dosage? ..................................10

4. What brand of Interferon were you on? .........................................................................10

5. How did you feel after your first shot? ........................................................................... 11

7. Did you have anyone around to support you? ...............................................................13

8. Can you make a list of side effects you experienced during the whole treatment? .......13

Did you find a way to relieve some of the side effects? ..................................14

Did you use any medications to reduce your symptoms? ...............................15

Did you use any form of alternative medicine or therapy? ..............................15

9. Did side effects improve with time or did they stay the same? ......................................16

10. Did you experience any psychological side effects? ...................................................17

11. Did you consider quitting during your treatment? ........................................................18

12. How did you feel when you were about to finish your treatment? ...............................18

Once you completed your treatment , did you notice any changes? ..............18

13. What would you say to someone who is about to start IFN? .....................................19


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Interferon Side EffectsIntroduction

I went through a one year treatment with Interferon. My treatment started back in November 2011 and it consisted of 30 MIU of Intron A five days a week for a month. The next 11 months involved 18 MIU on

Monday, Wednesday, and Friday. It was honestly the worst time of my life. I experienced side effects like headaches, nausea, fatigue, mild depression, hair thinning, muscle aches, chills, and fever.

Before I started my treatment, I looked into Interferon a bit. I was mostly looking to find out more about the side effects I might experience, and about how the medication actually works.

At the time I knew little about Interferons and their effect on the human body, so I started googling. While I was researching I noticed that there are many people who were experiencing side effects while taking Interferon. But all-round information about it was hard to find. Yes, I could easily find some medical mumbo-jumbo text about it but that was hard to interpret. I wanted to hear how other people felt. How they dealt with it. That was the information I was looking for but couldn’t easily find. And I think real people stories can help a lot.

During my treatment I wished I had someone to talk to; someone who could really understand what I was going through.

When my treatment was over and I fully recovered, I wanted to share my story with others. I wanted to offer them all the information I collected during my research and my story as well.

I am trying to help all other people who are currently going through, or are about to start a treatment with any form of Interferon, like Intron A, Roferon A, Pegasys, Betaseron, and others.

Also, I wanted to collect people's personal

experiences about how they coped with the side effects. I started interviewing people online but they were somewhat reluctant to share. In the end I interviewed four patients. I asked them some questions based on what I would have liked to know if I was looking to learn how it feels to be on Interferon.

I am a supporter on a health-related forum, www.steadyhealth.com. I often visit this site and help other people with their problems. This is a really easy way to help someone and it feels great too. Throughout my research I used SteadyHealth to find people for the interview. Eventually, the staff there asked me to publish this research there, which I OK’ed right away.

Thanks guys!

Claude




About Interferon1

1 IFNPrimerISICR:DeborahVestal,Ph.D.withtheassistanceofISICRmembers,”IFNPrimerISICRApril2006”TheInternationalSocietyforInterferonandCytokineResearch(ISICR),April2006,Web/PDF,January17th2014

Information for non-scientists

Besides the interviews, I also added some basic info about Interferons and what diseases they are used for. I hope this is of some help to you. NOTE: Medical information about interferons is copied from the link above. It is originally and beautifully written by Deborah Vestal, Ph.D. with the assistance of ISICR (International Society for Interferon and Cytokine Research) members.

What is Interferon?

Interferons are natural proteins made and released by cells of the body in response to viruses and other disease-causing microorganisms. They were first discovered by scientists in England in 1957 although a few years earlier, scientists in Japan had evidence of some type of substance produced by the body that blocked viruses from reproducing.

Interferons help protect you against infection and help in the recovery from infections. They can also affect how cancer cells grow. Interferons are critical to maintaining a healthy immune system.

How do Interferons work?

Much remains unknown about how interferons inhibit viruses and the growth of cancer cells. Interferons are known to interact with other proteins on the outside of cells that are called receptors. Through their interactions with receptors, interferons send signals to the inside of cells that result in temporary changes in the cells of your body. These changes can make your body much more resistant to the spread of infection. When you have a cold, there is lots of interferon in the circulation because your body has responded to infection by the cold virus. The benefit of interferons in cancer, and particularly melanoma, appears to be due to its effects on the immune system. Studies to better understand how interferons work are being performed in laboratories around the world.

Natural interferons are those produced and purified from human cells. The benefit of using natural interferons, as with other products derived from human sources, is that they are like the proteins made in your body. However, these natural products also have the potential to carry their own viruses that may cause disease. The risk of carrying viruses as a result of the production of natural interferons is very low. Interferon alphan3, made from human blood, is carefully screened to prevent any contamination. There have been no known cases of infection with any viruses as a result of receiving interferon as a treatment.

Recombinant interferons are produced in bacteria or in animal cells by using DNA technology. This permits the production of highly purified interferon at a much cheaper cost. The production of recombinant interferons in animal cells results in modifications to the proteins that make them more like those isolated from humans but interferons made in bacteria are also effective when given to patients.


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What diseases does Interferon treat?

● Interferon alpha-2a (Brand name Roferon-A) has been used to treat chronic hepatitis C, hairy cell leukemia, and some forms of chronic myelogenous leukemia (CML). Roferon-A has also been approved for use in combination with ribavirin. Roferon-A is produced by Hoffman- La Roche Inc.

● Interferon alpha-2b (Brand name Intron A) has been used to treat hairy cell leukemia, AIDS-related Kaposi sarcoma, certain types of genital warts, chronic hepatitis C, follicular lymphoma in combination with chemotherapy, and malignant melanoma. Interferon alpha-2b may be used in combination with another drug called ribavirin (Brand name Rebetron) to treat chronic hepatitis C in those people who no longer are receiving any benefit from being treated with interferon alpha alone. Some patients may have been cured of these conditions when the combination of drugs was used. Intron A is produced by Schering Corporation.

● Interferon alfacon-1 (Brand name Infergen) is used to treat chronic hepatitis C. This interferon is produced by recombinant DNA technology and expressed and purified from bacteria. Infergen is produced by Amgen.

● Interferon alpha-n3 (Brand name Alferon N) is used to treat venereal or genital warts caused by human papilloma virus (HPV). It is isolated from human blood lymphocytes induced to produce alpha interferon. Alferon N is produced by Interferon Sciences.

● Interferon beta-1a (Brand names: Avonex and Rebif) is used to treat relapsing forms of multiple sclerosis (MS) and is a recombinant interferon produced in cell cultures. Interferon beta-1a will not cure multiple sclerosis but has been found to decrease the number of flare-ups and slow the occurrence of physical disability. Avonex is produced by Biogen, Inc. and Rebif is produced by Serano, Inc.

● Interferon beta-1b (Brand name Betaseron) is used to treat relapsing forms of multiple sclerosis (MS). Betaseron is a modified interferon beta. Betaseron is generated by recombinant DNA technology and is expressed and purified from bacteria. Betaseron does not cure multiple sclerosis but has been found to reduce the frequency of attacks. Betaseron is produced by Chiron Corporation and distributed by Berlex Laboratories.

● Interferon gamma-1b (Brand name Actimmune) is used to delay the time to disease progression in patients with: (i) Chronic Granulomatous Disease (CGD) and (ii) severe malignant osteopetrosis. Chronic Granulomatous Disease is a very rare inherited condition characterized by reduced function of a specific type of white blood cells. Severe, malignant osteopetrosis is also an inherited disease but one characterized by a problem in normal generation of bones. This problem results in bone overgrowth and defective ability of white blood cells to destroy microorganisms. Treatment with Actimmune for both conditions greatly improves the ability of the patients to fight infectious disease. Actimmune is produced by InterMune.

● Peginterferon alfa-2b (Brand name PEG-Intron) is a form of interferon alfa-2b produced in bacteria. It is then combined with a compound called monomethoxypolyethylene glycol (PEG). The addition of PEG allows the interferon to remain in the body longer, thereby reducing the number of injections. PEG-intron is used in the treatment of chronic hepatitis C in the absence of compensated liver disease and without previous interferon alpha treatment in combination with REBETOL (ribavirin). It may cure chronic hepatitis C in some patients and may be able to prevent liver failure or cure liver cancer that is caused by hepatitis C infection.

● PEG-Intron is produced by Schering Corporation. Peginterferon alfa-2a (Brand name Pegasys) is another form of interferon alfa-2a produced in bacteria and then combined with bis-monomethoxy polyethylene glycol (another type of PEG). The addition of PEG to interferon alpha allows the interferon to remain in the body longer, thereby reducing the number of injections. Pegasys is used in combination with COPEGUS (ribavirin) to treat patients with chronic hepatitis C who have compensated liver disease and have not previously been treated with interferon alpha. In some patients, chronic hepatitis has been cured with the combination treatment. Pegasys and COPEGUS are produced by Roche Laboratories.



Interferon Side Effects Stories1. What was the reason you started taking interferon?

I am 26 years old. My sister warned me that the mole on my back looked “suspicious” and that I should get it checked out. She didn’t like the way it looked. It wasn’t really that big. It had a diameter of 10 mm, and it had two

colors. It was really dark and had dark, shiny purple spots on it.

On September 1st 2011, I had my first excision of the mole on my back. Thirteen days later, the pathology results came in and I was diagnosed with malignant melanoma. It was the nodular type, without ulceration. It had a thickness of Breslow 5mm and Clark IV. To cut a long story short, I was immediately sent for additional tests. Blood, ultrasound, X-ray and another re-excision of the primary site.

Everything was negative. They found no traces of melanoma on my lymph nodes. My blood tests came back OK and the X-ray was fine too. With this in mind I visited the head oncologist and he told me that I should come back as soon as possible to start chemo. I was puzzled. Why should I do the chemo if there were no traces of melanoma cells in my system? In the end I was somewhat right. They dropped the chemo thing and decided to put me on Interferon. I remember the doctor saying that it’s not chemo, it’s biological “immunotherapy”. I asked them if there were any side effects and the doctor said: “Maybe you will lose a little weight and feel a bit tired”, and that was it. What I didn’t really like is the fact that the treatment would last 12 months. I really didn’t expect it to last that long. At that time, I never heard about Interferon or biological treatment so I decided to do some research.

I am a 29 year old woman now, but I was 24 in 2008 when I got neuritis. This can be a stand-alone diagnosis, but it can also be a sign of autoimmune diseases such as multiple sclerosis. I was pretty young

then so I thought, well, I don’t think this is serious. My physicians didn’t seem to think it was a big deal.

After four years, I had a relapse. I had to have an MRI and it showed that I had some lesions. Some more tests confirmed the diagnosis. The diagnosis was that I had relapse remitting multiple sclerosis. That happened in August 2012 and the medical staff decided to put me on Betaseron (interferon beta 1b) treatment.

I stayed in hospital for nine days when I started the treatment. This is because the medical staff wanted to monitor me to see how I reacted to interferon beta and plus, and so they could teach me how to give myself shots later on.

I am 37 years old. I am diagnosed with essential thrombocythemia so i wanted to see if the drug worked and my condition would improve because my wife and I wanted to start a family.

Claude May

Kevin

I am 42 years old. I a mole removed from my back in February 2010. When the results came back, I was diagnosed with malignant melanoma. I had 3 more additional operations to remove the lymph nodes under

my armpits. They found metastatic cells there, which were 0.2 mm in size. At the time no one said anything about any treatments other than surgery. Five months later, new metastatic growths started appearing on my back. They removed them all and then I was put on Roferon A to start with.

Ned


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I am 58 years old and female. I started experiencing pain in the right lower side of my back in June 2011. The pain was unbearable and I spent the next two days in hospital. I needed shot after shot of painkillers — 8 of them in total — before the pain went away. Diagnostic tests showed I had kidney stones. That’s all the information I got, so I took time off and returned to work after a month. After just five days of work, I experienced another bout of serious pain. I was sent for a CT and they found a tumor inside my right kidney. The medical staff told me it was still encapsulated, so

it didn’t burst out and was still in there, in the kidney. I was sent to have an operation right away. They removed my right kidney and I was put on pain relief. After postoperative paperwork and procedures I was told I would be starting chemo which would come in 6 cycles, 1 month for each cycle.

One cycle would consist of a consecutive 15 days of subcutaneous Interferon, 6 MIU, and the next 15 days would involve an IV every 2 days.

Zee

2. What was the reason you started taking interferon?

I started out using google to find out more about Interferon, but getting good information was pretty difficult. I kept running into “medical” documents that were very hard to interpret. I did find a couple of good forum topics and

articles but they didn’t have as much information as I would like. All I found was a list of side effects and that’s it. The side effects looked pretty scary. Flu-like symptoms, fever, chills, hair loss, depression… and the list went on! None of the information I found really said anything about how to to deal with those side effects or how to reduce them. Also, I had little time to do my research since I went for a second opinion and the treatment was starting in just 2 weeks.

At my age, I really didn’t have much of a choice between starting the IFN treatment or not. I mean, as a 24-year old, what could I say? No? Besides, my health insurance covered it and it was for free. It would be irresponsible to turn this offer down. Or oven worse, regret it later after my health deteriorated and ask myself: what if?

I was concerned about the side effects, yes. Not so much about the cost because it was fully covered by my insurance. I didn’t know anything about its effectiveness at the time. I was concerned about my weight, I didn’t expect other side effects. I was always skinny and really didn’t want to lose any more weight. I told myself I would eat properly no matter what, and promised I wouldn’t lose a pound, which turned out to be harder as the

Claude

treatment went on. At the time I didn’t know anyone who received interferon.

I wasn’t really satisfied with the information I got from my doctor. I tried asking him a couple of questions but he ignored me or said little. The only thing he said is that I might lose a “little” weight.

Well, I was looking for others’ experiences with Interferon. I wanted to know how other people did on the drug. I also wanted to know how effective my treatment was and what I could do during the treatment to relieve the side effects. A list of side effects and some research about it would also be great (but one that’s easy to interpret).

No, I didn’t do any research. Doctors told me some basic stuff like that I could experience fever and some minor pain. Besides that, nothing more really. I would really have liked to know how other patients dealt with it. What

kind of side effects did they have? What can I expect and how can I deal with it?

May



I started out using google to find out more about Interferon, but getting good information was pretty difficult. I kept running into “medical” documents that were very hard to interpret. I did find a couple of good forum topics and

articles but they didn’t have as much information as I would like. All I found was a list of side effects and that’s it. The side effects looked pretty scary. Flu-like symptoms, fever, chills, hair loss, depression… and the list went on! None of the information I found really said anything about how to to deal with those side effects or how to reduce them. Also, I had little time to do my research since I went for a second opinion and the treatment was starting in just 2 weeks.

At my age, I really didn’t have much of a choice between starting the IFN treatment or not. I mean, as a 24-year old, what could I say? No? Besides, my health insurance covered it and it was for free. It would be irresponsible to turn this offer down. Or oven worse, regret it later after my health deteriorated and ask myself: what if?

I was concerned about the side effects, yes. Not so much about the cost because it was fully covered by my insurance. I didn’t know anything about its effectiveness at the time.

I was concerned about my weight, I didn’t expect other side effects. I was always skinny and really didn’t want to lose any more weight. I told myself I would eat properly no matter what, and promised I wouldn’t lose a pound, which turned out to be harder as the treatment went on. At the time I didn’t know anyone who received interferon.

I wasn’t really satisfied with the information I got from my doctor. I tried asking him a couple of questions but he ignored me or said little. The only thing he said is that I might lose a “little” weight.

Well, I was looking for others’ experiences with Interferon. I wanted to know how other people did on the drug. I also wanted to know how effective my treatment was and what I could do during the treatment to relieve the side effects. A list of side effects and some research about it would also be great (but one that’s easy to interpret).

No, I didn’t do any research. Doctors told me some basic stuff like that I could experience fever and some minor pain. Besides that, nothing more really. I would really have liked to know how other patients dealt with it. What

kind of side effects did they have? What can I expect and how can I deal with it?

The only research I did about the drug was reading posts on MPD Net. I still consider MPD-net to be the best resource for info on MPNs on the internet. The information I got there was better than what my

hematologists offered and far better than what my nurse specialists said.

Claude May

Kevin

I didn’t do any research about it. All I knew about it when I started treatment was that it costs a lot. I didn’t ask my doctor much, because I didn’t want to know much about it. I thought I would just take things as

they went because I didn’t have much choice. I am a bus driver, and I hoped I could continue working but that was about it.

Ned

I didn’t really but my doctor told me that my treatment is not really chemo, but rather something to protect me. When I heard about the treatment, I didn’t know the name of the drug I would be taking.

I would have really liked to know more about this drug, but all they said is that it was for my protection.

Zee


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3. When did you start your treatment and what was your dosage?

I started my treatment on November 1st, 2011. My dosage was 30 MIU intravenously 5 times a week for one month AKA “a one-month high dose”. And 11 months 3 times per week 18 MIU via multidose pen. Claude

They got me on treatment from May 2013. I had to take 1 mcg (8 MIU) 3 times a week and I am still on it as we speak. I do the injections myself.

May

HU 2003 - 2004

IFN 2005 - 2006

HU 2006 - 2008

Pegasys 2008 - 2011Kevin

I started with Roferon A, I think it was 3 MIU, in May 2011, but I don’t think it helped a lot as I got metastatic cells under my armpit and back a month later. They canceled my treatment with Roferon A and I was admitted

to hospital for detailed examinations after a couple of operations on my back and armpits. Then, in July 2011, I was put on INTRON A 20 MIU high induction phase for 4 weeks. After that I was released from hospital, and they gave me IFN to self-administer 3 times a week.

Ned

I started my treatment in January 2012. I had to be at the hospital at 10 am on the first day of treatment. The doctor came in with a nurse and told me about the side effects I could experience. The doctor said: “These are the symptoms you will

experience. Not having side effects means that the treatment is not working for you so we’ll have to change it.”

They explained that I should take two tylenols before I get a shot. The doctor told me I will probably start shaking and get a fever after two hours. It gets easier later on, but he said I’d not be able to do much the next 3 days because I’ll feel weak. The second day would be a little better, he said, and I should feel much better after the third day than on the first day. He kept reminding me that not experiencing these side effects means the treatment is not working.

Zee

4. What brand of Interferon were you on?

Intron A (interferon alpha 2b)

Claude

Betaseron (interferon beta 1b)

May

Roche

KevinIntron A

Ned

Intron A

Zee



I remember I took it early in the morning at around 10. I was hospitalized at the time since it was required for anyone starting high dose IFN. Right after the first dose, I really didn’t feel much different. I went

outside for a walk but I do remember one thing. I felt my legs were kind of weak. Hard to explain. It’s like I felt my muscles and bones inside. It wasn’t pain but I just felt them and it was not comfortable. I went back to my room and around 5PM it hit me. I had a massive fever. I already took like 5 tylenols but it wasn’t enough, my temperature was still around 104 Fahrenheit (40 deg Celsius). They had to give me an ibuprofen shot to get it down. Terrible experience. I was shaking like a leaf. I couldn’t control it.

Besides the fever from hell, I remember my back and my legs were hurting. It’s like that feeling you get before you get a flu. Like my bones were sore. For the first shot, that was pretty much it. It was hard to remember anything else due to the high fever and shaking. Oh yeah, and chills prior to fever. I had constant goose bumps. After the first shot it took like 5 hours for the fever and chills to start.

Nurses usually gave me 2 tylenols to drink when I took my dose. And I took 3 later when the fever started. They told me I could take ibuprofen but I didn’t want to; I heard it’s bad for the stomach and worse than tylenol I guess.

The morning after, when I woke up, I felt terrible. Like I was run over by a train. Before it could all sink in, it was time for another shot. I can’t say I wasn’t scared. But being in the hospital gives you some security. And nurses were really nice to me. I was scared though, that I was going to have these crazy fevers all the time. I didn’t know what to expect in the future.

At this point it’s hard to say what I was thinking. It was all “new” to me, and I was kind of confused about what might happen next. I was sure hoping that I wouldn’t feel like that in the future or for the entire year. They told me the side effects will be easier to handle with time and that was comforting.

The first three days in hospital were a bit of a drag. I always developed a high fever after a shot of betaseron. I just received an injection under the skin, just like they do with insulin. I was also given two 500mg tylenol

pills at 7 in the morning, two hours before I would get a shot. I would get my Betaferon injection at around 9 o’clock. It wasn’t until 6 hours after the shot that I would start to feel anything. The medical staff measured everyone’s body temperature at 12 but it would still be ok then.

Around 2-3 in the afternoon I would get chills, bone pain, muscle pain, fever and all the other things. It felt exactly like I had a flu. It wasn’t the muscles that hurt really, it was more like my bones hurt — but there was no specific part of my body which was in pain. It was more general, like the flu.

I also experienced pain at the injection site. If I gave myself an injection in the leg, my leg would hurt after. It was definitely worse doing it there than anywhere else. When I injected myself in my lower stomach it would feel like a bee sting, and it would turn reddish and I’d develop a lumpy spot. I met a few of patients who said they really couldn’t handle getting Betaferon injections in the legs at all.

Claude

May

5. How did you feel after your first shot?

Like you, I had terrible side effects. Skin rashes, cognitive dysfunction, memory loss, pain during bowel movements and slow insidious depression. I also had fever but only the first night I took it, later I

would take it at night before I went to bed so I would sleep through any issues. I used tylenol to combat fever but I’ve also used Bisoprolol, Ramipril, Aspirin, and Simvastatin, however they were for a separate condition.

I had some side effects with Pegasys but less severe. I had skin rashes, cognitive dysfunction and low neutropenia. IFN affected my quality of life badly and I would not like to return to it. Pegasys has been far better with less severe side effects and has put my condition into remission.

Kevin


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The side effects were really bad. I remember it would take like an hour, hour and half for the effects to start kicking in. Fever, chills, nausea. The worst part is that my treatment started in the middle of the summer

and I would need 3 blankets because I felt so cold I was shivering. But then I’d wake up 2 hours later and my body temperature would be like 600 degrees.

I went on to give myself IFN shots at home and I would usually give myself a dose at 11 AM or 5 PM. I gave myself the shot around 5 PM because of two things. First, I didn’t want the fever, pain and chills to start while I was sleeping. I was afraid I would have to get up at night and wake my wife and kids up because there is no way I could drive in that state. Plus, going to hospital at 1 AM is not really something I wanted.

I experienced weight loss, but not a lot. I lost some of my appetite but I also drank a lot of green tea and the smoothie made of beet and carrot which may have affected my appetite as well.

Maybe the worst thing was this constant feeling of powerlessness. Mind you, the muscle pain and crankiness were equally nasty. I would give myself IFN at 5PM on Monday and would be knocked into bed. I’d wake up the following Tuesday also feeling like a train ran over me. I’d basically lose that day as well. When I would wake up on Wednesday, I would feel better but then it was time for another shot. It’s like, as soon as you start to feel better, it would be the time for another shot. There’s no way you could escape it.

I had sudden mood changes too. I got angry easily. But again, I don’t think it was directly caused by Interferon but basically happened because of everything else surrounding the treatment. I think I also noticed a change in my sense of smell. I think my sweat had a different smell.

Ned

So I got there at 10 am and the doctor explained how the treatment works. They gave me a shot right after. I felt fine at the time, and I took 2 tylenols beforehand as instructed. I started to get the chills three hours later, and they grew into enormous

tremors and fever. I had 3 or 4 blankets but still felt cold. I got a fever two hours after the first side effects.

It shot up to 40 degrees Celsius (104 degrees Fahrenheit). I needed to take 3 additional tylenols to deal with the fever.

The treatment had to be discontinued at one point, because my leukocyte and platelet counts were extremely low. I needed to get my blood healthy really fast so I was in hospital and received three IV bags every day for a week.

The next two days after the shot I would feel completely broken and in pain. I had pain all over my body. Really ugly pain, like I’m rotten on the inside. I also vomited, but only once. Even though I didn’t really vomit much I still felt nauseated all the time and my appetite was really low.

My hair thinned out, which I noticed when I brushed it and after a shower. That was shocking. I had bruising and pain at the injection site. I got the shots in my arms, but they alternated the left and right arm. It hurts quite badly. I think the injection sites are sensitive to weather changes even now the treatment is over.

I only used tylenol to combat fever. I didn’t use other drugs.

Zee

So, the first thing I would feel is pain at the injection site. After that, my mood would start to go south. And I found that I should really have an analgetic within 20 minutes or I would get a really high fever. Later on, throughout my treatment, I came to expect the fever, and I used to take tylenol beforehand to stop it from happening.



Yes, I had my family there to support me as well as my friends.

I think it was hard for them to understand how exactly did I feel. It was even hard for me to grasp that a medication can have such adverse

side effect. I wasn’t much of complainer, so I always said:”it’s fine, it’s gonna be better”. But, even with that in mind I wanted people to know how I felt. Its really difficult to explain it to someone. They just keep looking at you with a blank stare and sorry eyes.

If you know someone who is on Interferon or helping someone I can give you phew advices. Basically what I didn’t like about people around me. Feel free to ask them how they feel. I noticed people held back with this question because they are afraid to ask it. It’s even worse when someone doesn’t ask me how I feel but I see that he wants to. So, ask them, they will appreciate it. Don’t overdo on making them comfortable. It’s ok to help them , but don’t ask them every 2 seconds “ do you want this, do you want that?”. It made me answer “no!” all the time. I know people are trying to be helpful, but most of the time they over did it. What you can do is to act normal, and give enough space. Don’t pressure them into doing something. I really liked just sitting, not talking with my friends. I didn’t have enough strength to engage in a conversation so I just sat there and that was fine. I also liked being alone when I was in pain, or had fever and shakes. Basically, give them more room to breathe.

Yeah, my family was and is there for me. They have been throughout the whole treatment. My two little daughters are a big support to me and they motivate me to make it through.

Claude May

7. Did you have anyone around to support you?

My family and friends didn’t understand. Most of my support came from my wife and online forums.

Kevin

Yes, my family was there for me and that really meant a lot to me. I don’t think they could understand how I felt, nobody can. But still, they were fully supportive. It’s not a good idea to distance yourself from your family. Ned

My family really supported me through and this meant a lot to me. They were scared of me a little , they hated seeing me those first three days.Zee

8. Can you make a list of side effects you experienced during the whole treatment?

Its hard to put them in a single list but I’ll start with a fever. About 4-5 hours after taking Interferon I would always get a fever. Along come the shaking and chills. Before the fever hit me, I would always get that uncomfortable feeling in my legs and back. It’s like a dull pain. It feels uncomfortable to lay down or stand up or do anything with your legs. There were headaches as well; that pulsating feeling at top left of my head. Those are some of the immediate side effects I experienced but I had many more down the road. Claude


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At first I really wanted to gain my appetite back so I did some research and asked doctors if there was anything I could do to regain it. They said there is no magic pill in the world of medicine that can really increase your appetite. So I gave up and made peace with the fact that I’m going to lose a lot of weight. I guess you could say that I could have made myself some really high-calorie shakes and chug those all the time; I thought of that too. But soon enough I lost my motivation to do it every day. I took tylenol for fever and chills, 2 when I was about to get a shot and 2 again

exactly 5 hours after the shot.

They gave me Interferon in the morning at the beginning of the treatment, at around 9AM. So the fever would start at around 2 or 3 PM. I would try to sleep through it but soon enough I would generally felt really tired and without energy. Later when I got a job, I changed the time of the shot. I would take IFN at around 5 PM, and the fever would start at around 10 or 11 PM. I would already be in bed by that time, sleeping it off. So, if you do have a choice, inject interferon in the afternoon because that way you can sleep through it. Yeah, you might wake up wet in sweat, but then all you’ll have to do is change your clothes and turn the pillow and blankets around.

I didn’t find any relief for the headaches, though I would suggest you drink plenty, plenty of water because most headaches are caused by dehydration. Also, Intron A actually “pulls” the water out of your system; you will notice the frequent urination.

If you are going to exercise or play any sports, make sure you don’t make the same mistake I did. I love playing table tennis. One day I didn’t eat much and later played it for an hour and all of a sudden I felt really weak, I was yawning and cold sweat broke out on my forehead and neck. I decided to go home right away. I was walking, and I was literally dragging my feet. At one point I just wanted to stop and lay down for a sec on the side walk. Seemed like a good idea then. I went back home, ate something and I felt better. I told my doc about it and she got all angry. She told me that happened because my sugar was extremely low and that I was lucky I didn’t faint. The doc said that I have to eat exactly two hours prior to any exercise. So I did, and never had that problem again. If you know you are about to engage in any physical activity make sure you’ve eaten at least two hours before.

There was a lot of nausea, and sometimes I would feel like I was about to vomit. I tried taking Reglan for the nausea to go away but it really didn’t help. I thought I felt sick because of all the pills. So I decided not to use these meds and just try to eat more healthily. Turns out I was right. So, if you are experiencing nausea, try changing your eating habits. Eat more often, eat healthier meals, and drink plenty of fluids.

Claude

Major loss of appetite. This one was big. It’s not that I would not get hungry at all; I would. But as soon as I would take just one bite, I felt full. And there is no way I could eat anymore. During the entire year, I lost 35 pounds and went from 200 to 165 lb. For a 6”3’ guy like me this was a drastic change in appearance.

My mouth was always dry, which damaged my teeth after a whole year. I also experienced hair thinning but it wasn’t like when you are on chemo where it falls out at once. I noticed it after I took a shower. There would be a lot of hairs in the bathtub. This was scary because I was sure all of my hair would fall out eventually.

Then there was constant tiredness, the kind that makes you want to sleep anywhere, anytime. Dragging your feet all the time and breathing heavily; feeling like you just don’t care. I didn’t even think about saying hello to someone, about the way I looked, if I picked the right shirt. It felt good not to care at the time. I guess in these situations you can see clearly what’s important in life and what’s not.

Generally speaking it was the worst time of my life. Maybe not as much because of the severity of the problem but because it lasted so damn long. A whole year. Feeling like you have a flu all the time. Just when you think that it’s over, it’s time for another shot. I really don’t judge people who quit this treatment. I had no children or a job at the time. I can only imagine how it is for people when they have a lot of responsibilities.

Did you find a way to relieve some of the side effects?



I used ibuprofen to relieve the fever and pain in the beginning, but I don’t think it helped me a lot. I had a different approach to this. I wanted the Intron to take the full effect. I didn’t want to risk it’s effectiveness by adding some other medicine that might interfere with it. I wanted to get through this without additional meds.

Ned

I did consider seeing an alternative practitioner or something and I am sure that would have helped me but I had so many other things to do that I just didn’t make it.

Maybe if those alternative treatments were a bit more popular, I would have gone. I simply didn’t know where to go to have one. As for alternative medicine supplements, I would definitely recommend them. I used whole bunch of stuff. Siberian Aronia concentrated juice, Hemp seed oil, vitamin pills, see algae, and lots of fresh vegetables. I really do believe that those things

helped me feel better. The only “catch” with this stuff is that you have to use it for a long period of time for it to be effective. I wouldn’t suggest extreme medicines like drinking petroleum oil every day but as far as some decent looking diets and products go, I say go for it.

Claude

Did you use any medications to reduce your symptoms?

I tried using other meds but at one point I had a feeling that they made me sick as well. I was really sick because of one medicine, so I didn’t want to poison myself with others. I don’t know if my liver could handle it. I took Reglan to ease my nausea but that didn’t help a lot.

One time while I was waiting in the hospital I was talking with this older guy who was on Interferon as well. At the time I was already 6 months into the treatment and he had only started 2 months ago. He just finished with his one-month high dose. I was complaining about the side effects but he

could not understand me. He said that he feels great, and only has a slight fever. I was glad and puzzled at the same time. Well, I guess some people deal with it more easily. He really did look normal and happy.

I told him that it’s really tough for me and that I’ve tried other meds to ease the pain but nothing worked. Out of his pocket he pulled out some pills, I can’t remember the name, but he said that he is sure those pills are helping him feel better and not experience the side effects of Interferon. I wrote down name of the pills, but later I forgot to look them up. I don’t know why, but I really didn’t believe that he could feel so great just because of some medicine.

Two months later we accidentally met again. This time, the guy looked different. He had really big eye-bags, he was a lot skinnier, his collar bones stuck out and he had this desperate look in his eyes. I approached him and asked how he felt. He looked right through me, as his eyes watered a little like he was about to burst into tears. He said that he doesn’t know what to do anymore, the pills aren’t helping him, he feels sick and can’t work. I felt bad for the man. I didn’t have much to say to him except that it will soon be over and that recovery is really fast once you stop taking it. It sounds scary but I just wanted to point out that how hard are you going to be hit with the side effects and when really varies individually. Some meds might help, but others might just make it worse. I say, ask your doctor about additional medication and do some research prior to taking any. Sometimes, there are no quick fixes with meds. You just have to make it through on your own.

Claude

Did you use any form of alternative medicine or therapy?


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I think that the cure is inside of us. In our minds. I used Bryce’s potion made of beet and carrot, lemon celery and potato. I think that helped a lot. I drank that very often, every day. My body reacted really well to the disease and I have to say that I think that is because of milk. I used dietary products my whole life and I really think my body was strong because of it.

Ned

9. Did side effects improve with time or did they stay the same?

Side effects did reduce in time. That’s good news, the longer you take it the easier it gets; however, although the fever is not strong as it was before now you begin to experience other things like fatigue. It builds up through

the therapy so make sure you get plenty of rest.

There were definitely oscillations. First I thought it was merry-go-round with side effects for each day. Because it made no sense for me to feel good on monday, and then really bad on wednesday and again really bad on monday. You never knew how you are going to take it that day. I figured out that it really depended on what you did the previous day. If you got plenty of rest , drink enough water, slept well then you are going to have an easy day. It’s a lot worse if you didn’t eat and drink enough, or got enough rest. My advice to you is to try and to healthy and drink lots of water. Don’t forget about physical activity, but don’t over do it. Everything in moderation.

Claude

I used to take tylenol 2 hours before the shot. I would take another two 6 hours later to prevent side effects and I would also take another one at around 9-10 in the morning just to make sure.

During the first five months of the treatment, I experienced these side effects. Now, 5 months into the process, I don’t need to use tylenol to combat fever anymore, I feel just fine and have no side effects. Now, it seems to go so well I don’t even remember when I had the shot.

I think I don’t have side effects anymore because my body got used to it. It’s been a while since my diagnosis now and I got used to the fact that I have inject myself with Betaseron 3 times a week. I have learned to organize my life around my diagnosis and treatment.

May

I was getting 1 shot per week. The constipation and pain while using the toilet were unbearable.

No pain when I first started IFN but after a few months it began and was constant until I stopped.

Kevin

My side effects didn’t really reduce with time. It was OK at times, but really terrible at other times. I think this varies from person to person and there’s not much you can do to reduce the side effects. You have

to understand that sometimes there’s nothing you can do about it. The best thing is to accept it as God gives it to you.

Ned

It got better after the first three days. The other 12 days of my 15 day therapy were much easier to handle. However, the 15 days of treatment were followed by a 15-day break and and I felt worse and worse whenever the time for daily shots rolled around again. I think I might have been able to get used to it if I took it regularly, but being off and on was only making it worse and worse.Zee



10. Did you experience any psychological side effects?

While going through this treatment, I guess it’s ok to feel angry and miserable. I don’t know how someone can be happy while having flu-like symptoms for a year. But, you do have to be careful. According to research,

40% of patients treated with Interferon develop some form of depression. There were even suicide attempts.

So don’t ignore your feelings. If you really feel down for more than 2 weeks straight, talk to your doctor about it. I mean it. I don’t remember having suicidal thoughts, but I did feel depressed. Now, I don’t know if that was because of the IFN or because I was feeling like crap all the time. Other thing I noticed is that you will feel a lot more angry. I was really anxious and furious at the same time. I would get really mad at someone for no reason. You have to be careful about that. Think twice before saying or doing something. I was really an a-hole to my friends. Luckily, they were there to support me. I said so many things when I was going through the worst of the treatment that I instantly regretted. The funny thing is that I felt regret but couldn’t say sorry because I was mad. Makes no sense.

Overall , be careful and try to control your feelings. You don’t want to hurt people around you as some might not understand how it is.

Claude

Yes, I experienced sudden mood changes and aggression. This bothered me the most because it changes my personality. I would react completely different than I usually would. But I had a solution for that.

When I get really annoyed by something or someone on the day I got a shot, I would sleep on it. If I am still really pissed off tomorrow than it surely means that my anger wasn’t caused by Interferons but because I was disturbed for real.

I was aware of these mood changes and psychological side effects and I am 100% sure it was because of the medicine itself. I mean I did have some mood changes because of my primary condition as well. Sometimes I get little depressed when weather would change, and this is something that MS patients have to deal with. This lasts for few days or so and it’s solely because of MS.

Betaseron side effects wouldn’t last that long. They would be really quick, a second, a minute. Like, I would feel great for 5 minutes, then depressed for 5. Sudden changes in mood are related to Betaferon.

I haven’t lost my appetite at all , but I still have this weird , unpleasant smell in my mouth, like acid.

One of the reasons i’ve taken Betaferon early in the morning instead of night is because I’ve been told that if you take it night it could induce a depression. I also read it online. Everybody’s saying I should take it in the morning to avoid depression.

May

Doctors were constantly asking me how I feel. They feared I would develop a depression. I can’t really say that I was not depressed. I think I was, but I don’t think it’s solely because of Intron. I think it’s because

of everything. The diagnosis its elf plus the side effects and Interferon. Its not just the medicine but the whole situation. One more reason as why I would give myself a shot at 5PM is just because I could have that little piece of wednesday feeling well. I think that helped me.

Ned

I was assessed by a neuropsychologist who suspected IFN was affecting my cognitive function significantly. After I stopped taking it and was reassessed by the neuropsychologist and performed

better in my testsKevin

No , not really. I really took it well psychologically. I was only praying to God to make it through all this.

Zee


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11. Did you consider quitting during your treatment?

Yes I did. I think anyone would consider it. I don’t blame people for quitting. It’s really tough, especially if you have a family to take care of.

Well, I didn’t want to quit is because I have already decided to go for it and I expected for it to get easier in time. I mean, if I already started, why should I quit and possibly ruin the effect of Interferon? I would feel like I wasted the time I was on it. This way, yes it was horrible, but it is over now and I am glad I got through it.

On the other hand it was free of charge to me as my insurance covered it completely (around $80K), and it was the only available treatment in my situation.

So I did consider it, and I kind of said it a couple of times to see how my doc and parents would react. They were not happy about it. They said: “If you lasted this long, you can do it all the way. We are here for you. Don’t let it be all in vain now.” Another thing that came to my mind is what if sometime in my life I get a recurrence and then I would bang my head asking what would have happened if I didn’t stop the treatment. I really didn’t want that to happen. My advice is that it’s hard but time really flies and it’s better to last through this now than to regret not going on or quitting Interferon treatments later on.

Claude

Obviously I felt really good. I already had a plan to regain my weight and change my life. I guess not being able to do much for year gives you a lot of time to think about your life and how you can improve it. I was counting the days till my last shot. I was really excited.

Claude

12. How did you feel when you were about to finish your treatment?

Once you completed your treatment , did you notice any chang-es?

Yes, a big yes. These are some great news. Once I completed my treatment it took only 4 days without it for me to start feeling a lot better. My mind was racing, like I was set free from a cage. I wanted to climb to the top of a building and scream. It felt so good. Like being reborn, like being given another chance. It’s really something special. Everything looked brighter; colors, people, life. It was also good knowing that I made it through and that I am a stronger person now. That is how I felt.

When I got close to my last shot I already had a plan to “return to normal”. I looked into exercising and gaining weight. So I created my personal push-up program and eating plan. It took me just 2 and a half months to gain back 35 pounds of muscle. That is fast. I got in shape pretty quickly and I was feeling great. So, that was really great news. All of the side effects will be gone very soon after you stop taking Interferon.

Claude



13. What would you say to someone who is about to start IFN?

I don’t really have any advice that would be applicable on everyone going on Interferon. It would depend on the person in question. It’s hard to give all-round advice, not knowing who’s going to read this.

To someone who really feels down I can say that the side effects do become easier to handle. Betaseron is something that prolongs your life and having injections every other day seems to be a small price to pay.

The thing I want to get across is that it will get easier with time. After a couple of months the side effects won’t be as bad as they were at first. At least, that is what it was like for me.

I think everybody should exercise while on this drug. But don’t put 100% of yourself into it, take a more relaxed approach. Everything in moderation, I’d say work at 70% of your full capacity. I even went to the gym on the days I had the injections.

Do not drink alcohol while on Interferon. Seriously, just don’t. I’ve tried it and I felt really sick. My motor skills were dramatically impaired but the thing was, I was fully aware of it. It’s not like a “normal” buzz. It reminded me of my relapse, it was really terrifying. I didn’t really know that I shouldn’t drink alcohol while on Interferon.

I got used to sudden the mood changes and actually learned to cope with them. I always counted to 10 before doing something rash when I felt agitated.

May

I think Interferon has helped me a lot and that it depends from person to person whether you are going to have bad side effects. Everybody reacts to it differently. I used ibuprofen to relieve the fever and

pain. The best thing to do is try to live life normally. It might get hard but I think that helps a lot. As for eating habits while on IFN, I don’t think you should change your diet drastically. Your body is already going through a big change, it doesn’t need another shock.

Drinking lots of water is a really smart thing to do in life, especially while on Interferon. I’d recommend speed walking or any other exercise just to get your blood pumping a bit.

Ned

I would almost always recommend trying IFN as the side effects different for everyone and many people cope well with the drug. However I would recommend Pegasys over regular IFN. I see no reason to use IFN now

that Pegasys exists. I do understand however that it is expensive.

I would recommend tylenol and anti-depressants while on IFN. I also think it is very important to record how you feel in a daily diary. As well as helping the patient, having a diary helps very much when you talk to your doctor.

I also went for counselling sessions with fellow patients and on my own with a counsellor. That meant I was able to talk about my feelings and have someone listen and understand me. I participated in patient forums where everyone sat in a circle and introduced themselves and then spoke about their conditions and personal experience. It helped a great deal.

Kevin

Stay positive and be brave. It’s important.

Go for walks outside. My doctor told me it would be good to take regular walks. I took his advice and I think it really helped. I was really down

at the end of my sixth cycle and I asked my doctor how much longer this will have to go on. I was quite desperate. And to my joy, he said this was my last cycle. I don’t think I could have coped with another shot, let alone 15 of them.

Zee


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I know it can get tough. Keep your head up. Get plenty of rest but don’t forget to exercise or take a walk from time to time. Force yourself to drink water, you might not even be thirsty most of the time. The more water you drink, the better you will feel (OK, there are limits of course). Take tylenol when you are getting a shot and when you feel those chills. See if you can take IFN in the afternoon so you can sleep through the fever. Eat healthily, eat vegetables and don’t be reluctant to try alternative medicine but be careful; you don’t want to harm yourself by drinking something

poisonous.

All in all, you can see what it’s like. It’s not a pleasant journey. If you don’t have other options, I would advise you to go for it. It’s not the same for everyone. Some say it’s not worth it, some say it is. I believe that we must do whats best for us. You have to prepare for it mentally. Tell your friends and relatives to go easy on you. Think twice before you say something and try not be angry.

Claude

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Dealing With Interferon Side Effects Patient Stories