Interferon possible side effects: Hi all, just... - MPN Voice

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Interferon possible side effects

Stay05 profile image
16 Replies

Hi all, just wondering if any one has had the experience of shortness of breath and mild intermittent chest pains when commencing interferon treatment? I am 4 weeks into treatment (after being on Hydroxy Urea for 15 years) experiencing considerable increase in fatigue shortness of breath amd have had mild intermittent chest pains. I am currently undergoing tests to rule out other causes but wondering if it may be the interferon causing this?

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Stay05
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16 Replies
EPguy profile image
EPguy

I'm at 4 weeks into Besremi INF, I've not had the specific problems you note. Are you taking PEG or Besremi? Are you still on any HU? Usually HU is not stopped all at once.

Other members here have noted that INF side effects can get better after a time.

I plan to post soon on a summary of my progress.

Stay05 profile image
Stay05 in reply to EPguy

Thank you, I am on Peg Interferon alpha. Specialist stopped HU completely 2 weeks into treament due to a significant decrease in platelets, white blood cell count, and a mild drop in Haemoglobin after many years of stability on that treatment regime. He said my body seems quite sensitive to the interferon. I am seeing my team tomorrow for further investigation. Perhaps will see if breathing improves if we stop interferon and return to HU. Have only been having 1 injection per week 45mcg.

EPguy profile image
EPguy in reply to Stay05

Interesting about sensitive response. I'm on the intro dose of Bes at 50. It's supposed to just test tolerance and not do anything, as HU is decreased, but I'm getting a clear WBC and PLT response also at 4 weeks. My 2-3 weeks was rough, but I think the HU may have been making trouble. I'm now on just the intro Bes dose, no more HU. My Dr thinks it might be enough at 50ml for now. (Bes goes as high as 500)

Do you have access to Besremi? It is milder for many patients.

For PEG some members here are on as low as 25mcg, maybe worth discussing with your Dr.

Stay05 profile image
Stay05 in reply to EPguy

I will ask about Besremi thank you. I will also keep following up with all tests, as the shortness of breath is very debiltating, however at the same time, I may ask to go back to HU to see whether this all clears up. If so then i may consider trying again at a lower dose or over longer period or perhaps the Besremi. Thank you for response and I hope you also have continued success.

Wyebird profile image
Wyebird in reply to Stay05

Gosh that’s a low dose if Peg has given you such good results you might be able to go further and increase the amount of days between jabs.

hunter5582 profile image
hunter5582

Shortness of breath (dyspnea) and chest pains are both listed as potential adverse effects of Pegasys (peginterferon alfa 2a). While I did not experience anything like that, we are all different in how we respondonline.epocrates.com/drugs/...

drugs.com/sfx/pegasys-side-...

Hope you get this all sorted out soon. Please let us know what you learn.

Stay05 profile image
Stay05 in reply to hunter5582

Thank you, I am seeing my specialist tomorrow.

Loooonglife profile image
Loooonglife

I would second what EP guy is suggesting. A lower dose than 45 ug may work for some patients and it’s worth trying before giving up on Peg-interferon. The Two options are 1) a weekly lower dose than 45ug or2) staying on 45ug (or whatever dose works) and injecting it less frequently, e.g. every 10 or 14 days.

In Addition, i believe it’s not unusual that patients get used to interferon over time with side effects subsiding (my observation).

That said, because side effects can be significant it’s important not to give up too soon and try to find the dose that works best, i.e. adequate hematologic response with minimal side effects. Treatment with interferon requires patience. Also having had the privilege of using Peg interferon and Besremi, my clear favorite is Besremi. I am having significantly better quality of life and better adherence to dosing schedule using Besremi.

Wishing you the very Best!

Stay05 profile image
Stay05 in reply to Loooonglife

Thank you I will take it all on board.

EPguy profile image
EPguy in reply to Loooonglife

Most encouraging that Bes may actually be as good as the mfr claims it to be. We're all adding great info in real time here.

Wyebird profile image
Wyebird

I haven’t experienced shortness of breath I’ve been on Peg since June. I’m glad you are having tests done to eliminate it as the cause. I do hope nothing drastic is found. Good luck with results of tests

Boobles profile image
Boobles

Hi stay I've just had my 2nd peg jab and I have a crackly chest with slight cough and sweats not fun but all I have been told is to keep an eye on it ! I have also noticed my blood work has changed somewhat I hope ur getting on OK

Stay05 profile image
Stay05 in reply to Boobles

Thank you all the best to you as well.

Hopetohelp profile image
Hopetohelp

I have been on peg for nearly a year. During that time they increased my dose to 90 from 65 and I got quite short of breath. Didn’t feel I could exhale properly so kept breathing inwards. Was mild but disconcerting. Once back to 65 all was ok. Good luck with your tests etc. please let us know how you get on

gvibes profile image
gvibes

Hi, I have been on pegasys for a year. I have been getting shortness of breath when I do physical (e.g., raking, lifting) work, although I am fine walking at a fast clip. I also have experienced fatigue in the past. Like said above, I will get temporary side effects when I start a dose, but they seem to go away after a month or so. Side effects for me have been dose related.good luck...

Sam2022 profile image
Sam2022

I had interferon since last Aug. with 90mcg/week. Only felt my knee lack of strength, no fever, no back pain. Another side-effect is I had Hep A positive, which my doc said no worry.

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