ET Jak2 . Low iron

[Stargaye]

I’m reaching out to the knowledgeable members of this incredible community from whom I have learned so much… to maybe give me some further insight….

I was diagnosed almost a year ago. Have been on Hydrea 2x500 a day.

Have been feeling very ordinary of late… overwhelming fatigue, joint pain, the bloating and abdominal discomfort most unpleasant … I was feeling generally “crap” as I told my GP 3 weeks ago. My platelets were sitting at 327 last blood test in Feb

I don’t see my haematologist till June 25th .. I last saw him in February.

GP suggested reducing Hydrea to 1x 500 a day and waiting 2-3 weeks then having all my bloods done…from Vit D, B12, LFT, Cholesterol, sugars, biochem etc etc everything else was fine except CRP is elevated around 13 and of my blood nos bit out of whack .. not surprising. Haemaglobin 123 RBCs 3.37 My platelets are 357

But my iron.. is quite low 5.5

Does anyone else have these issues? As this is all so new to me and Haematology is not my strong point.

Also just putting it out there and wondering …would the likelihood of possible Parovovirus 19 exposure and poss infection cause this kind of impact.

Wishing everyone well…

[hunter5582]

Much of what you are describing is consistent with adverse effects from HU. It sounds like that is what your GP was thinking in suggesting you reduce your dose. HU adverse effects are dose-dependant. Suggest you review this issue with your hematologist. You may wish to review several issues.

One issue to review is your treatment target for platelets. There is not a linear relationship between platelet levels and risk of thrombosis. There is no particular value to having platelets < 450 for most patients with thrombocytosis. Some MPN experts consider the delta (degree of change) to be more significant than absolute numbers. When an absolute number is used, some use 600. silvermpncenter.weill.corne...

Another issue to review is you other options for treating the ET. Pegasys is another preferred first-line treatment option. Some, including myself, find Pegasys easier to tolerate and more effective. Note that we are each different in how we respond to these medication. Some more about your options here. nccn.org/patients/guideline...

Hope you find answers and relief soon.

[Stargaye in reply to hunter5582]

Thank you Hunter for your response.. and information given.. it is much appreciated

I did forget to mention that I also have dx of IBD /Ulcerative Colitis of 20+ years which is usually very well controlled. The HU I think has most likely stirring that up. Am due for my regular colonoscopy surveillance so will be interested to see what’s happened there.. especially as inflammation markers are up. I try so hard with my diet and lifestyle.. keep well hydrated etc.. reasonable exercise and usually feel great and enjoy life but at the moment I feel each day not living up to my full potential. And to end it all now discovered a kidney stone in short space of time as my GP ordered abdominal scans to check spleen etc when first diagnosed. Am wondering if this is also HU related along with weight gain… time to look at alternative medications I think.

[hunter5582 in reply to Stargaye]

One of the primary adverse effect I experienced with HU was a compromised GI system - constipation. HU is well known for its adverse GI effects. I expect you may be correct that it is stirring up the IBD issues. Suggest that you review the situation with a MPN Specialist and explore all of your options.

Weight gain is a know HU side effect. While HU can cause renal impairment, I have not heard of it causing kidney stones. It can cause gout due to increased uric acid. I would ask a urologist familiar with this form of chemotherapy whether that is a potential problem regarding kidney stones.

Wishing you relief and all the best moving forward.

[saltmarsh]

I agree completely with Hunter's post. I'm a little older than you and was on a slightly higher dosage of HU a few years ago but was also getting phlebotomies and not feeling well. I couldn't tolerate the dosage at the time - up to 1500mg/day.

Reducing the HU dosage, eliminating the phlebotomies and a brief stint with taking iron capsules greatly improved my situation. Over 2 years later and my numbers are still stable with minimal side effects from the HU - now alternating 500 and 1000mg.

Personally, I think a lot has to do with your doctor - they need to recognize that everyone reacts differently to the disease and the treatment. There is no cookie cutter approach for most of us but there is a good solution out there - just a question of finding a doctor who will recognize that. Wishing you the very best.

[Stargaye in reply to saltmarsh]

Thank you so much for your response.. it is so comforting to know one is not alone when feeling that the drugs you are taking is having such an impact on your system. We are definitely not as human beings .. “one size fits all” when it comes to medication tolerance. I experienced dreadful side effects of opioid meds after knee replacement surgery . Time maybe to look at alternative options to HU.

Hopefully the iron supplements will also help in meantime with fatigue. I will be interested to hear what my haematologist will say in couple weeks time…but have also learnt one very positive piece of advice from this forum and fellow MPN patients we have to advocate for our own treatment options. Take care