Side effects from weekly injections

[Pappafraser]

My MPN treatment

Hi all, been injecting for over a year with 90mgs of interferon weekly.

I have been getting worse & worse with muscle, joint pain & breathing issues and a pain between my shoulder blades?!

I am assessed 3 monthly over the phone ☎️ and was doing really well?!

im now living on a diet of ibuprofen to control muscle pain?!

Had a full massage today which helped, any advice would be greatly appreciated.

I’m 57 work full time, elderly parents & an autistic son, so time isn’t something I have apart from nanny napping 😴 when I can!?

TIA to all who took the time to read.

[EPguy]

You likely have seen my long series of posts on my IFN risk. I acquired a bad and most likely permanent autoimmune disease from IFN, it was triggered by a flu vaccine while on Besremi.

It seems this is a new condition for you. Your top priority is to rule out an autoimmune type of condition. Joint pain and breathing troubles are a concern. (even while most likely from something else) It's rare but among the worst case possibilities from IFN.

With IFN we need to get thru the 1st two years and then odds of adverse reactions decrease. I didn't make it.

You should discuss ASAP with your GP. My suggestion is to request a referral a rheumatologist. In the unlikely case it's a rheum condition you want to stop the IFN ASAP.

[hunter5582]

I expect you already know that arthralgia and myalgia are possible Pegasys adverse effects. Shortness of breath when a PEG adverse effect is something that should be reported to your prescriber ASAP. Suggest a call to your MPN care team prior to the next appointment is in order.

Glad to hear that the massage therapy helps. I see a massage therapist every 3-4 weeks. She keeps me functional and out of pain.

Note that ibuprofen is not a good thing to combine with aspirin. It needs to be monitored very closely.

Avoid/Use Alternative ibuprofen + aspirin avoid aspirin >325 mg/day; otherwise, monitor bleeding s/sx, renal fxn; give ibuprofen dose >400 mg 8h before or at least 2-4h after low-dose aspirin ER: combo may incr. risk of GI ulceration, perforation, bleeding (incl. life-threatening), renal impairment, other adverse effects; ibuprofen may inhibit cardioprotective effect of low-dose aspirin (additive effects; possible competition for platelet binding sites) online.epocrates.com/intera...

I also experience osteoarthritis, tendonitis, fascitis. I found a high-quality curcumin to be more effective than ibuprofen or any other NSAID. Do note that most anything that is anti-inflammatory tend to be blood thinning and may potentiate aspirin. Fortunately, I have not had an issue with combining curcumin and aspirin. Also note, that I am followed by an Integrative Medicine specialist for this and other complementary health interventions.

Hope you get everything sorted ASAP.

[ainslie]

sorry to hear of your issues with Inf, one thing to factor in is that allegedly Ibuprofen is very bad for the good bacteria in the gut , destroying the flora can lead to other health issues, of course most GP’s either don’t know or care about that.

[Hopetohelp]

Sorry to hear the problems you are having. Not nice when in pain and busy life of caring for others means you do whatever you can to keep going including popping painkillers. In a similar situation myself. Would it be worth talking to your haematologist about reducing dose? It might help. I found my breathing struggled when I was on 90. On 65 was much improved

[Pappafraser]

Thanks very much, great help & appreciated

I will mention this on my next phone appointment!

Thanks again

[Pappafraser]

All great information taken on and I have made notes for my next appointment

Thanks 🙏 to all !