Hi friends!
I’ve been having pain in my hands, forearms, shins and feet intermittently for the past month that comes on after Pegasys injections. Feels more like a deep,dull ache than sharp pain and very different from muscular pain so bone/joint pain seems like the best descriptor for it.
I’m guessing it’s related to the Pegasys - inflammation perhaps?
I’d read antihistamines can help and wondering if any of you lovely people have had a similar experience and if you found any relief?
Thanks!
S
Hi Sarah, Really sorry to hear that ur experiencing this pain at the mo. I'm not on Peg but there was a period of about a month I had all these same pains. I put it down to stress tbh which would be inflammation in the body. I have read on here people taking antihistamines. So u could give that a go. Bxxx
That’s interesting! I was thinking the same about it maybe being a bit of an inflammatory response. Thanks B 😊
Hi Sarah, I have been on pegasys for about two years now (I’m et triple neg and was unable to tolerate other treatment options). I’ve always had some bone pain, which I presume is the ET, however in the last few months I have been getting joint pain (knee, ankles wrists, fingers and, strangely elbows?). I am currently going between haematology (who recognise that this could be a side effect of the pegasys but seem unwilling to facilitate any investigation) and GP (who know very little about MPNs and associated treatments) to try and get to the route cause. Of course it could have no relationship to pegasys but it’d be good to know either way in order to make informed choices.
It’s a bit of a struggle trying to get a doctor to really listen, I guess made difficult as this all telephonic.
Anyway, I have not had any ‘expert’ opinion as yet but if I do I’ll let you know.
Take care
Sue
Sorry to hear that Sue. So frustrating to feel unheard in those situations! Have you any idea what kind of investigations haematology could do (if they were willing) to try figure it out?
I started on an antihistamine last night so I’ll let you know if it makes any difference over the next few weeks🤞🏻
It is a little frustrating, though I’m quite laid back about these things and do take it as it comes. I’m terms of investigations it would probably need to be a rheumatologist? And the other option, which my haematologist is very reluctant for me to do, is to come off the pegasys for a time to see if the pain goes/improves.
I hope the antihistamine works for you. I’m not entirely sure of the link with this? But please let me know how it goes.
Take care Sarah, and at least we have sunshine
Can’t beat a bit of sunshine for lifting spirits! I haven’t done any deep research on the potential benefits of antihistamines so not flying the flag for them as of yet, will ask my consultant if she’s seen any evidence to suggest they’re effective and let you know.
They’re recommend in this short interview as a strategy for dealing with histamine or cytokine induced mpn symptoms, so in the meantime I figured it’s a theory worth testing anyway. Happy to be a guinea pig 😂
Sue I’m checking in to let you know that antihistamine experiment has been a successful one so far.
Pain eased after 5 days taking them, stopped taking & pain returned, started again 2 days ago and it’s easing. Might be worth a try!
Hi Sarah, thanks for the update. And very glad you’ve found something that helps. Can I ask what type of antihistamine you have been taking.I’m still bouncing back and fore, and have an appointment with GP tomorrow. I will tell her your experience with this. I’m still running and walking but not as much as I generally do. 🤷♀️ Anyway…
Take care
Sue
I took a generic version of clarityn and it seemed to do the trick. There’s two different types mentioned in the link I posted earlier so might take a bit of experimentation! My haematologist said it was fine to take alongside aspirin & interferon
Arthralgia and myalgia are common side effects. Bone pain is less common but also possible. online.epocrates.com/drugs/...
mayoclinic.org/drugs-supple...
Complicating this is that you can also get bone pain due to the MPN. Given the timing, it seems reasonable to think that it is a PEG side effect. Would definitely let your MPN Specialist know that you are having this new symptom.
Hope you find relief soon.
Thanks for the links my friend!
I’d experienced myalgia from day 1 on peg, but it eased between doses and was totally manageable. It feels a little dramatic labelling what I’m experiencing as ‘bone pain’ but It’s just an entirely different sensation so I’m at a bit of a loss as to how describe it.
No doubt it’s complicated by the fact I’ve torn a ligament in my knee - carrying my post lockdown body weight around on crutches elevates aches and pains to a test of endurance 😂
The timing also coincides with getting my covid vaccinations, so I’d thought it may be a case that between vaccines,injury and peg my immune system may just be in full flight at the moment and creating inflammation that’s causing the bother.
Will check in with the doc and report back if I get information that may be of use to anyone here
Reduction of allele burden on Pegasys?
Pegasys side effects
Pain injecting Pegasys 
Pegasys dosage!
