Interferon negative side effects personal research

[ClaudeM]

Hi,

I was wondering if anyone received any kind of treatment with Interferon lika INTRON A, Roferon A, Peginterferon, Pegasys....and so on?

I was on INTRON A , and i had major side effects. This biological treatment was going on for a year and i lost 35 pounds during that period. Not to mention all of the negative side effects like fever, headache, nausea, chills, hair thinning, muscle ache. However, my dosage was really high. 30 MIU for induction phase and 18 MIU for maintanance phase.

So now i am doing a personal research so i can help people that are about to start this kind of treatment. Did you find any home remedies on how to reduce these symptoms? I found out that Magnesium pills really help with the muscle ache.

Share your story with me and lets help other people who are about to start treatment with Interferons. I wish i had some help during my therapy.

[ETphonehome]

Hi ClaudeM,

I had a terrible time with regular Interferon, experiencing cognitive impairment, skin rashes, fatigue, physical pain and depression and I was on only 3 miu twice a week.

On Pegasys I experienced few notable side effects apart from one or two minor lupus like things such as brain fog and fatigue. Peg has induced molecular remission for the past year and a half.

[ClaudeM in reply to ETphonehome]

Hi ETphonehome,

I know exactly how that felt. Just thinking about me gives me a sick twist to the stomach.

So Pegasys helped you?

I am still waiting to see if my treatment has helped me. Only time will tell. It's been almost a year since i finished my treatment and everything is okay for now.

How long were you on the medication?

[ETphonehome in reply to ClaudeM]

Pegasys has been great for me although I did have some minor issues with neutropenia which is common with all Interferons.

I was on regular Interferon for around a year and Pegasys for around two.

[ClaudeM in reply to ETphonehome]

Since i am doing a research about Interferon side effects. Would you be willing to participate in it? I want to collect all of the people's stories about it and put it in one place.

I was on Interferon for a year and i sure would've liked if i had some support on how to handle the side effects. Share your story with me so we can help others.

I am still not sure in which format your story should be. Like a questionnaire or maybe a short essay. Or just about anything from your point view? Maybe you have some suggestions on this as well.

[ETphonehome in reply to ClaudeM]

Hi Claude, I would be delighted to help. You have a PM.

[Hidden]

Hi ETphonehome, when you say molecular remission, do you mean your counts have been normal without medication for the past year and half?

[ETphonehome in reply to Hidden]

Yes, my counts have been stable without medication for the past year and a half. What is considered "normal" obviously differs from individual to individual.

I do still experience the odd migraine, visual disturbance and episode of pins and needles particularly if I am tired or fatigued.

[Hidden in reply to ETphonehome]

That's really interesting I always believed I would be stuck on meds for ever, renewed hope, thank you.

[graymare]

I have been on roferon-a for 2 years. I was on 5 x 3miu per week for 5 weeks then moved to 3x3miu then 2x3miu. Am now on 2x 3miu every 9 days. Side effects at the beginning were pretty ghastly with alopecia, fever and shivering, painful legs and back and fatigue and brain fog. Platelet count has dropped from 1350 to 250 and side effects now are mainly painful legs and back and sometimes fatigue and the occasional jagged aura over one eye if I have been rushing around.. Paracetomol reduces the pain for sleeping and to a manageable level, walking 40 minutes per day helps reduce fatigue (I know it might not make sense but it works!) Hair is still falling but also growing back, sometimes a bit shivery after an injection, but not always. Brain fog is noticeably less.Haem is allowing me to gradually reduce the amount of interferon as long as the platelet count remains stable. I tried magnesium for muscle pain but always got leg cramps. Hope your project helps others, but it certainly seems frightening to get all those side effects at once.

[ClaudeM in reply to graymare]

Hi graymare,

Thanks for sharing. Yes, those are the side effects i had as well. I also tried to exercise. I am a passionate table tennis player, so played it 2 times a week. Sometimes i was ok, but many times i would feel over-exhausted , weak. One time i barely managed to get home ( i think my sugar went dangerously low). Doc said that i needed to eat at least 2 hours before any exercise which helped a little later on. I also realized that symptoms would start to occur exactly 5 hours after the shot. So i would take 2 Paracetamols when getting a shot and 2 after 5 hours and 1 before i go to sleep.

Also, i think the best time for getting a shot, at least for me was around 5PM. Fever, chills, headache and tiredness would kick in and i would go to sleep.

Stay strong.

[Dutchie17]

Hi ClaudeM,

I am happy you started this discussion as my treatment with Interferon (Pegasys) has started recently and I do experience side effects.

First about the dosage though - I am not sure what is meant by .. miu. The dosage I have to take is 90mcg (microgrammes) = 0.33 ml (milliliters) once a week. I am in the Neherlands, that could explain the difference in dosage notation. Anyway, I am not even sure if mine is a high dosage or not.

The side effects I experience most are fatigue, brain fog, and just today I am having an unexplained muscle pain in my entire back - not badly so, but it is tiresome anyway.

What strikes me - and I would love to know if this is other sufferers' experience as well - is that it's pretty much a merry go-round with the side effects, and you never know when you have a good day or a 'side effects' day.

If you need any help or more feedback for your research, please let me know!

[ClaudeM in reply to Dutchie17]

Hi Dutchie17,

IU is i think for international units. M is for million. So i am not sure how many mcg is that or whether your dose is high or not. What condition are you treating. I was diagnosed with Melanoma, breslow 5 mm, Clark IV, no ulceration NED. And by doing some research Melanoma patients often receive these high doses.

Yes, the muscle pain is common. Try magnesium, it helped me a bit. And i call it muscle pain but it really felt like my "bones" hurt. Just like when you are getting a flu. Deep, dull pain and feeling. I couldn't even lie down comfortably.

Hah yes, merry-go-round with the side effects. I totally agree. Some of them are constantly there like fever, chills, headache, fatigue. But other would happen randomly. My thought on this was that it depends what you did prior to your shot. Like did you get enough sleep, did you drink enough water, did you eat enough. I mean , overall body condition at the time of getting a shot.

I will contact you about my research on PM as soon as i get more people involved and prepare a questionnaire or something.

May you be well.

[Dutchie17 in reply to ClaudeM]

Hi Claude, I have been diagnosed with ET.

It sounds like the effects you experience are worse than for me.

As for the 'flu feeling', in the list I was given of potential Interferon side effects (and this list is 1.5 pages long...) this feeling is listed as the no. 1 side effect. Both my haem and the nurse who taught me how to administer the injection recommended that I take two paracetamols immediately after the injection, and to administer the injection right before bedtime in order not to feel the flu symptoms. And I must say that fortunately, this helps. I do experience other side effects though.

I completely agree with you that overall body condition makes a huge difference. I'm under the impression that especially good sleep is essential.

I 'll definitely try the magnesium for the muscle pain.

I hope you will be well!

[ainslie in reply to Dutchie17]

most experts on Pegasys now recommend starting at 45mcg to minimise side effects and then after a month or so slowly increase the dose a little every month or so to get to correct dose, Pegasys can affect counts straight away for some but others it can take up to 2 years to control some counts, usually the RBC's are slowest to lower.

[Sherry2]

Hi All

Thank you so much for sharing your thoughts.

I was diagnosed with ET about 3 years ago and have been on clopidgrel.

Recently my heam has suggested I consider inteferon - I am petrified to say the least.

It helps to know you are out there!

Thank you

[ClaudeM in reply to Sherry2]

Hi Sherry,

Are you still considering taking interferon? How can we help you?

[Sherry2 in reply to ClaudeM]

Firstly I would like to say Thank you to you and everyone for sharing their experiences.

I am seeing my heam later this month, when we decide what we do next. The last appt 4 months ago is when she brought up Inteferon.

Taking it? My count was at ~880 4 months ago and has been climbing for a few years now, so I might not have a choice!.

How can you help me? Thank you :-). Keep writing to this blog.

At this point, I don't know what to ask.

[ClaudeM in reply to Sherry2]

Sure i will keep writing. But you can help others as well. Firstly , What do you think about Interferon at this point? Have you done any research?

And as someone who is, hypothetically speaking, about to start interferon what information would you look for? What would you like to know?

You can keep writing here and i will reply to your questions and concerns and give you advice if you are starting IFN.

[Sherry2]

Hi ClaudeM

Happy to help.

The research I have done is that IFN has side effects but also everyone is different and reactions are different. If / when I am on IFN I will simply have to see how I react and deal with it.

The leg pain and use magnesium is really useful to know.

What would I find useful to know is:

Does higher the platelet count mean a higher dose of IFN to bring it under control?

Does Higher dose mean more side effects?

Do I have to take this for the rest of my life?

I have no symptoms except a migraine once a month and get tired. so my question is - do I really want to take IFN when I feel quite alright, working and enjoying life?

At what point / count do I have no choice but to take IFN?

I do find other people's experiences very useful - so thank you to everyone

[ClaudeM]

UPDATE:

I finished creating my research / book with the help of steadyhealth and it's completely free.

It's called "Dealing with Interferon Side Effects: Patient Stories". And it has...well, exactly what is says. Interviews from other patients who were on Interferon.

I also created and added another booklet called "Interferon-About" which is a collection of useful links i gathered through my research.

I hope this is of some help to someone:

steadyhealth.com/interferon...

Thanks.

Claude

[Hidden]

Talking to a supportive person and being kind to one's self.