No meds except warfrin

Hi is there anyone with PV been on hydroxy then pegusus interferon but due to negative side effects of both of these are currently taking warfrin only.Adiewon

[hunter5582]

I was on phlebotomy-only for a while after not tolerating HU. Fortunately, I have tolerated the IFNs and am getting a good response. Perhaps the phlebotomy-only could work for you. there is also the option to try Jakavi. Suggest reviewing all of your options with a MPN Specialist and review risks/benefits of each choice.

All the best in identifying the optimal treatment plan for your situation.

[Hidden in reply to hunter5582]

Thanks Hunter very helpful indeed.Adiewon

[LIGEBA in reply to hunter5582]

Hunter can I ask what made you stop the Phlebotomy only and start the IFN? Do you also do Phlebotomy?

[hunter5582 in reply to LIGEBA]

The side effects from the phlebotomy-induced chronic iron deficiency were worse than the PV symptoms. I experienced decreased energy. loss of concentration, alopecia, and reactive thrombocytosis (PLT + 200). In addition, I am positive for a non-driver mutation (NF1). I want to do what I can to decrease my risk of progression. I have not needed a phlebotomy in over 2 years being on the IFNs. I just had to have one a few weeks ago. As my iron levels have returned closer to normal, the erythropoiesis increased. Due to an increase in ALT/AST/ALP, I could not increase my 150mcg Besremi dose at this time.

Managing a MPN is always a balancing act. We have to reduce the risks of the MPN, while addressing actual MPN symptoms and the adverse effects of treatment. The answer can be different for each of us. The answer can change over time. Hope you find the right answer for your unique presentation.

[LIGEBA in reply to hunter5582]

Thanks. I understand what you mean about the chronic iron deficiency. I am still not clear how the phlebotomy vs HU or IFNs work in decreasing risk of progression. I was hoping all that was needed was keeping HCT, RBCs, WBCs, and Platelets at appropriate levels and keeping inflammation at a low level. After reading so much here from all of you who are so knowledgeable, I'm not convinced my thoughts are correct. I will need to push my dr. harder for an answer on this next visit.

[hunter5582 in reply to LIGEBA]

The answer to the question about progression is complex and there is not universal agreement on this topic. The research on Besremi demonstrates promising outcomes but it is still too early to say anything definitive, The short version is that the IFNs appear able to target the JAK2 mutated cells. Some people achieve significant reductions in the JAK2 allele burden. Note that the value of reducing allele burden is also still debated.

I also have an additional non-driver mutation (NF1) that increases my risk of progression to AML. I have decided to do what I can to decrease my risk of progression. Following 18 months of treatment with low doses of IFNs (Pegasys then Besremi) my allele burden has reduced from 38% to 9%. My MPN Specialist agrees this is a good thing. We just not know how good it is yet. My view is that a reduced allele burden is a whole lot better than a stick in the eye.

This is an issue to review with a hematologist who is up to date on the current research, AKA a MPN Specialist.

Hope that helps to answer your question.

[Dottiedot]

I haven't been on hydroxy but was on peg interferon for a year and half with some very nasty side effects. I'm currently just taking an aspirin however I am classed high risk due to hypertension but currently no other medication has been discussed I think my bloods are ok at the moment but will find out at my next app in March

[Hidden in reply to Dottiedot]

Thanks Dottiedot all l can say is no more hydroxy for me or Pegusus Interferon .Adiewon

[Rachelthepotter]

hi. You might find it worth discussing using an oral anticoagulant, such as Xarelto , rather than warfarin, next time you see your specialist or indeed your GP. Easier to get good control of clotting risk. I agree with Hunter that it does sound as though using ruxolitinib might also be worth a try.

if you do use ruxolitinib, then be aware that it can cause horrendous skin cancers. Especially if you’ve had any previous sun exposure.

All the best

Rachel

[Hidden in reply to Rachelthepotter]

Tha k you Rachel very useful feedback thank you.Adiewon

[PhysAssist in reply to Rachelthepotter]

Hi Rachel,

Agree with everything you said!

We in the medical field tend to be slow adopters when tried and true medications like Warfarin are involved, yet there is a very large amount of data that supports the direct oral anticoagulants' [DOACs'] safety and efficacy profiles as being better than Warfarin- no matter which one is suggested: dabigatran (Pradaxa), rivaroxaban (Xarelto), apixaban (Eliquis), edoxaban (Savaysa), or betrixaban (Bevyxxa),

Like Jakafi, HU has also been associated with non-melanoma skin cancers, and, in fact I am currently in the process of being treated for a basal cell carcinoma that developed after my 3-4 months on it [which isn't typical, but in fairness, I also have a strong family history of skin cancer, and am in my lower-mid-60's.]

Best,

PA

[Mtnlife in reply to PhysAssist]

I have been on Eliquis for 2 1/2 years with no side effects whatsover. Most people I know on this drug have had experiences simlar to mine.

[Mirror368 in reply to Mtnlife]

I have also been on Eliquis for three years with no problems.

Eileen

[saltmarsh]

I sympathize with your dilemma. I recently had to reduce my hydroxy from 1500 to 1000/day due to intolerable digestive tract issues. The difference was almost immediate and I feel much better. Blood counts continue to improve but obviously time will tell. I have not had a phlebotomy in several months due to the roller coaster effect on blood counts. I don't know what your side effects are but perhaps you could tolerate a lower dose of hydroxy. My own preference is to take each step slowly and be open to trying anything before proceeding on to the next level of meds. Several posts on this forum suggest our bodies can often, but not always, accommodate a new drug regimen. For me it took a month on the higher dosage before I threw in the towel. Good luck as you pursue the next phase.

[william-Indo]

You could ask your hem about Jakafi

[PhysAssist in reply to william-Indo]

...or Besremi -which may be better tolerated than Pegasys because of the every 2 week dosing cycle due to a longer-half life.