1 year post diagnosis

[FINFAN1970]

I am a 54 yo male living in Vegas, I found out I was Jak2 positive last year, looked at labs before doctor and freaked. I have been having slightly higher RBC and Platelets for around 6-7 years. I used to donate blood pretty regularly and took testosterone, so the doctors kinda ignored it. I was a paramedic I ended up injured, by lifting and fighting patients so much that I became disabled, couldn’t have surgery for the back since it’s at 2 different levels, also had horrendous migraines do to the injury. Signs and symptoms of the injury are those common signs of heart attack and stroke. So it was ignored for years. They immediately put me on hydroxy, which made me sick and threw my GI tract into hibernation. Then checked my other systems to see if there we any other issues, if I didn’t have disability I don’t think I could have afforded all the test! Next, the BMB I refused because of all the back issues, I know it’s in the pelvis but I think it redundant, they see the labs and see that I am JAK2, it’s not gonna change treatment which is currently PHELB, every 3-4 months, other than that I am iron deficient, Ferritin levels sometimes sit at 4-5, have brain fog severity changes daily along with weakness and being tired. I did increase my baby aspirin to twice a day and has helped with migraines, that’s on top of taking excedrin migraine twice daily. I wanted to thank everyone that put this site together and everyone that contributed, the information here has been enlightening and helpful.

[hunter5582]

Wow! That is a lot to deal with. Given the complexity of your case, it is particularly important to consult with a MPN Specialist rather than a regular hematologist. Hopefully, you are already doing this. if not, here is a list. mpnforum.com/tsr-the-list/

Regarding the BMB, I do not know why the back injury would be relevant. It may be that you do not need a BMB if your diagnosis is clear. The results would not change your treatment plan.

Sorry to hear the HU did not work for you. I was also HU-intolerant and refractory to it. i have done much better on the interferons (Pegasys/Besremi). The IFNs have been more effective and much easier to tolerate than other treatment options.

It is common for people with PV to be iron deficient. the purpose of the phlebotomies are to make you even more iron deficient. less iron = fewer RBCs. Unfortunately, iron deficiency without anemia can have significant adverse effects, including fatigue. I experienced this along with impaired concentration and memory, alopecia, and cold intolerance due to phlebotomy-induced iron deficiency. This is what lead me to choosing the IFNs for treatment. Using the IFNs has significantly improved my quality of life.

I experience acephalgic visual migraines due to a brain surgery to remove a tumor. I found that a CGRP inhibitor was very effective in dealing with these migraines with no adverse effects. This would be something to consult with a migraine specialist about. There is no reason to suffer needlessly.

Suggest that you consult with a MPN Specialist and a migraine specialist regarding your situation. you may find significant relief with an appropriate care plan.

[FINFAN1970 in reply to hunter5582]

Thanks for the response, I do have a MPN specialist who is very good, I will be loosing him shortly, it was hard for him to start listening to me but in the end he did after I reported him, I tried to tell him we are a team I just do not blindly follow. Truth is I am worried about other meds and I have good days, and bad days. What has Peg done for you what kind of side effects? My labs aren’t horrible it’s dealing with the iron deficiency, it kinda similar to be diabetic I noticed when I eat meat I get clearer in a little bit. Has your fatigue improved since meds? How long have you been on this journey? Concentration is a little different that’s the best way to put it because I also have ADHD and depression/anxiety which has been a life long journey. Your brain tumor was found out post surgery? How bad is your cold intolerance? I have bouts of it everything seems like it hits for a few hours the goes back to normal. I might have some alopecia, I thought was do because of testosterone, is it connected to mpn? Lastly patches of itchy skin in palm of hand and forearm be reading here to keep covered and moisturizer, which I never did because of how hot Vegas is, that being said I always wondered since this is do to some unicorn disease that the fallout of all the nuclear testing the 70’s in the southern Nevada area did this, since I am a life long resident of the desert not very far from test site. Lastly I have seen a migraine specialist on this journey and he said I had like for different types of headaches, out of the month I have about 20-25 headaches they are controlled by meds, but have to change them every so often sometimes OTC, natural, and script. Hopefully you can live your live effectively, I am not bitching a lot people on here are very severe and I am on journey not quickly, but nonetheless there, I wish I could be as helpful as others have been just hearing what I am dealing with that it might be comforting or helpful to see, hearing your “story” is your experience and is helpful, makes people to think I have that too and maybe there’s a way I can improve if that person did. Thanks for spending a moment and a piece of your journey and “story” it is nice to know I am not alone.

[hunter5582 in reply to FINFAN1970]

My quality of life improved significantly since starting on Pegasys. I later switched to Besremi when it became available. The IFNs have been more effective and had ewer side effects than any other treatment, including hydroxyurea and phlebotomies.

The iron deficiency symptoms improved as my iron levels restored through diet only. Energy levels, concentration, and memory all returned to my normal baseline. The cold intolerance was bothersome when iron deficient. My hands and feel easily became very cold with minimal exposure to lower te,meratures. Since I spend a good bit of time in the outdoors, this was problematic. This issue also resolved when my iron levels restored.

Side effects from the IFNs have been minimal. I experienced itching and occasional rashes, which have been well managed with a daily dose of Zyrtec. My LFTs elevated to 3X/Upper Limit of Normal at one point. A daily dose of milk thistle extract (prescribed by my Integrative medicine doc) returned to LFTs to an acceptable level. I do have a dose-limiting issue in that I am mildly lymphopenic and borderline neutropenic at 175mcg. Besremi.

The good news is that 175mcg does a good job keeping me in a complete hematologic response, though it seems I will need a phlebotomy about 1X/year. This does not cause any iron deficiency symptoms and is preferable to further reducing the leukocytes. My JAK2 VAF has reduced from 38% to 10%, which is an excellent molecular response. What matters the most is that I feel better now than I did 10 years ago. Quality of life is my primary treatment goal. My current treatment plan is achieving that goal.

Wishing you all the best on your journey.