Cytokines and MPN

[StellaPFM]

I read the different Post here almost everyday and I am amazed and very great greatful about how much I have learn from everyone.. Thank you!

I do have a specific question concerning my MPN journey..

Feeling really sick and having bumps on my head as well as an occasional face swelling, I ended up at the university hospital and was tested for Allergies. My diagnosis was Uticaria and high platelets that had to be looked into. LaterI was told that I have ET after an BMP. Jak 2 pos. No other mutations.No mast cell cancer. 0 fiber. MPN somehow triggering my strong reaction.

I was referred 7 months ago to a hospital specializing in MPN, there I was told I most likely have PFM, so I have been taking Jakavi 2x10mg, Aspirin,2x Fexofenadine180mg for the allergy plus a monthly shot of Xolair. This cocktail of medication really helps me. I can work full time again and feel mostly really good. But, now my feet are slightly swollen and I have pain in the joints of my feet while walking. Really uncomfortable. So a new thing caused by the cytokines again. All my blood levels are good except 750 thrombos.

I got another opinion from a different specialist, and he thought I have ET and it would be a good idea to slowly switch to PEGASUS because in the long run it might be better although Jakavi works better with cytokines.

Any thoughts?

[hunter5582]

Sorry to hear about the struggles. Excess inflammatory cytokines are not our friends!

What you are experiencing with the foot pain/swelling may be related to systemic inflammation. Or is may be something else. I am wondering of the specialist you talked to reviewed the potential adverse effects from Jakafi. These include edema and musculoskeletal pain. What you are experiencing may be unrelated to the meds, but may be worth asking.

Whether Pegasys or Jakafi is a better choice is not something with a clear answer. it depends on how multiple factors. What are your symptoms? How do you react/tolerate to each medication? What are your treatment goals? Do you want to opt for an interferon which may reduce your risk of progression? Perhaps that is why the other specialist thought PEG might be better in the long run. Ultimately, this decision is based on your treatment goals, risk tolerance, and treatment preferences.

All the best moving forward.

[StellaPFM in reply to hunter5582]

Thank you so much for your support and imput. I have an appointment next week with my specialist to see if I can get the foot pain sorted. The treatment goals for me are definitely quality of life and to slow down the progression of MPN. Probably most of us want the same wonder drug. If it is somewhat possible with interferon, I am willing to give it a try. Everyone reacts different as I can tell from all the posts.

My main problem has been the allergic response my body has that is triggered by MPN. It seems not be a common side effect of the disease.

I just hope interferon will help with that too. I must say though Jakavi is working pretty well, it gives me quality of life, but I don’t think it stops the progression as much as maybe an interferon??

[hunter5582 in reply to StellaPFM]

I believe there is evidence that Jakafi can reduce allele burden. The evidence is still pending whether Besremi or Jakafi will prove more effective in reducing progression on a permanent basis. We will need decades of evidence to know that for sure. It does seem clear the Jakafi is superior for symptom control for some people. If it is working for you and you tolerate it and you have a history of drug intolerance, it is very reasonable to be reluctant to make a change.

There really is not a black and white answer regarding which medication is better. It is a matter of judgement about which will help you achieve your treatment goals and your risk tolerance, Wishing you all the best moving forward.

[digijools in reply to hunter5582]

Hi Hunter5582! Do Cytokines cause swollen joints in hands too? I am PV and on HU for now 4 years and I am developing bumpy knobs at base of thumbs and leg bones. Any one else experience this? I am female, age 59.

[hunter5582 in reply to digijools]

There are a number of reasons for swollen joints and knobs like you describe. Inflammation is part of that process. An excess of inflammatory cytokines does produce an inflammatory environment in the body. It could contribute to the problem, but may not be the cause.

I would suggest having the knobby areas of swelling checked out for a proper diagnosis. We can all develop various forms or arthritis, tendonitis, calcium deposits and other issues. Hydroxyurea can cause gout as an adverse effect. There is no way to be sure what is going on without a proper assessment. Your PCP can give you a start on the process. Depending on what the issue is, you may need to consult with a rheumatologist or orthopedist as well.

Hope you get it sorted out soon.