Hi
I recently started on interferon switching from Hydrea.
I have ET. Since starting interferon l have been having on -going leg pain ( hip and shins) not all the time.
First in my left leg then in the right. Wandered if anyone else has had the same. I take paracetamol which helps.
But it’s been days. Does anyone understand what causes the pain would physio help? Does it go once the body adapts? Otherwise l have no other side effects
I expect you already know that muscle pain (myalgia), bone pain (ostealgia) and joint pain (arthralgia) are all known side effects from IFN. drugs.com/sfx/interferon-be... .
I would certainly be sure to let your doc know. I expect the doc may just say to take some NSAIDs, but perhaps there would be some other options. Regardless, the doc needs to know.
Please do ask the doc about why this is happening. I would expect it is a part of immune response, but that is just a guess. If you do find something more out, please let us all know.
This is of more than passing interest. I am actively considering moving to Besremi when it becomes available in the USA. It really does help to hear from those already taking IFNs and what they experience and learn.
Hopefully this will subside once your body adjusts. If you are still making the transition from HU to IFN, i I would also wonder about the interaction/potentiation that may occur. Another thing to talk to the doc about.
Please let us know how things go. All the best my friend.
Thanks Hunter. After the first injection the pain affected my left shin and hip. Then it disappeared for a few days during which l saw my haematologist. A day or so after that meeting the pain reappeared but on the right shin and hip. My last injection was 9 days ago but the pain continues in the same positions on my right side. Apart from the interferon affect l do occasionally have some moderate discomfort in my hips, guess old age. Plus my shins are sensitive so l am always careful at the gym not to strain. Interferon seems to amplify the discomfort in these weak areas? I am taking paracetamol just two pills a day. That works! The pain comes in waves around 5am and then noon. Like clockwork! Otherwise all is good my platelets are 270 other bloods good and l feel well in myself. I am due my next injection on Monday if the pain gets worse l will contact my haematologist. I am due to see him in three weeks. Hopefully the pain will go as my body adjusts to the meds. It would be good to understand the process of interferon and it’s impact. The doctor reduced my HU to one a day. I was curious as to know if physio might help these weak areas and if others on interferon had recommendations
I agree with the "weak organ" theory. If you have an area that is already a problem, that is where side effects are most likely to occur. Unfortunately, aging is not always kind to our joints. I would hold out some hope for side effects decreasing once you are all the way off the HU. Drug interaction can include potentiating adverse effects. I expect you are also right to think it may get better as your body adjusts to the IFN.
Do please let us know what you learn.
My doc doesn't think interferon is effective for ET. I am wondering how can I convince my doctor to prescribe interferon for me since I am concerned side-effects of taking HU for long-term. Thanks
Suggest a couple of things, one of which is reference to the literature. PEGylated Interferon is a standard treatment intervention for ET. mpnjournal.org/how-i-treat-...
legeforeningen.no/contentas...
onlinelibrary.wiley.com/doi...
The second part of this is about patient choice. This is your decision, not the doctor's. It is your preferences that matter the most. Doctors advise and recommend. Patients make decisions. If the doctor is not willing to respect your very reasonable preference for PEG-IFN over HU, then get a new doctor. Here is a list of MPN Specialists who are likely to be more up-to-date on treatment options for ET.
Do be aware of another potential issue. Many formularies prefer HU of PEG-IFN due to the cost. HU=$70/month. PEG = $4000+/month. Some payers make it harder for the docs to prescribe PEG even when it may be preferable. It can sometimes take extra work by the doc get PEG authorized.
Hope you get access to your preferred treatment plan without any more trouble.
Thanks a lot for the information. I will read the articles you recommended and discuss with my doctor next time. Wish you all the best
Hi Dovme,
I hope you’ve had some resolution to your pain?
I had similar pain for the first month of interferon and seems to be easing off over time.
My hip/pelvis, shins and feet were most painful, and I’d already been having physio for an injury in my hip area when I started interferon. Injury has now mostly healed and pain after pegasys injection is less.
Could be coincidence but interesting to hear hunters “weak organ” theory and that your experience has been similar.
Hi Sarah
Yes it resolved after the first few injections But it was a very anxiety provoking experience. Useful to write about particularly if it helps others to know it’s a side effect
It’s helpful for sure! I’ve learned so much from everyone here.
How are you finding Besremi generally? I’m looking into making the switch to Besremi from Pegasys if the side effects (mostly the dreaded fatigue!) are less
Despite my doctors posturing they are awaiting trial data as currently only given to PV patients in Germany. But am hoping in the future. At last the vaccine roll out is picking up here. I just had my first dose of Pfizer
I am taking HU instead of IFN. But has bone pain as well.
