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JAK2 Mutation - Effects and Questions
Blood Cancers & Disorders | Last Active: Jan 23 5:55pm | Replies (339)Comment receiving replies
@JustinMcClanahan hi I too have been recently diagnosed with PV and JAK2 mutation I’ve been on hydrea 500 for the last 4 weeks and and am suffering from neuropathy especially at night which is keeping me awake also awful fatigue and I have a couple of questions I hope can be answered firstly I have bad around my back and was taking Vimovo and no not sure what painkillers if any I can take now? Also with Christmas coming up and all the festivities is it ok to have a glass of wine as it says on the info with hydrea not to drink alcohol also if any has neuropathy what have they found helps as I’m new to this I’d be grateful for any helpful suggestions to manage symptoms
Replies to "@JustinMcClanahan hi I too have been recently diagnosed with PV and JAK2 mutation I’ve been on..."
I too have PV JAK2 positive on two separate occasions. I'm on hydroxurea and baby asa and have for 3 years. it was tough to get used to the hydrea at first, fatigue, stomach issues and the like. however, about a year ago something happened and I no longer feel anything related to the Hydrox. I ALWAYS remember to take it and I feel like myself again..BTW I take it with food... in my case im 78 it took time for my body to adjust..Have you been given a JAK2 alle burden number? it tells you the percentage of current blood cells carrying the JAK2 mutation.. I have it once a year..Someone asked about the phlebotomy, can the blood be used, unfortunately no, it gets disposed of..about wine, I don't drink or have never smoked..I guess that's a question for your hematologist. I have one cup of black coffee in the am and then 8 to 10 glasses of water a though out the day, that's it for drinks...To the first post, you should feel comfortable asking your hematologist any questions you have, this relationship is key, I believe in being a partner in my care..please do research there's tons out there but I never make a change without letting my hematologist know before making a change. Happy holidays everyone.....Stay positive.
@roughanne I too am starting to have neuropathy in my feet and it happens all day long. I have been on HU for 33 years and this has just started now that I am starting to convert to PV, otherwise have ET JAK2 mutation. Is the neuropathy a symptom of the PV? or the HU? I have a glass of wine about once a week, just to feel like I am enjoying life, but otherwise I know the alcohol is not good while taking HU. Recently just found out that I have LOW IRON. now diagnosed with Iron Deficiency Anemia, but my HCT and Red count are normal. (my PCP ordered it for me since my Hematologist does not do tests other than CBC. I started on 324mg of Ferrous Gluconate on M, W, F. anyone else have low iron? itneverstops. Leene
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@roughanne Yes, that neuropathy is a “b—-h”! I take one Magnesium 400 mg capsule a day and recently changed to taking it in the evening. That seems to help with the foot/leg problems at night.
The exhaustion is probably what I have complained of most but it comes and goes, at least for me. So, I make the most of my bursts of energy and when I get tired I stop and rest. I try not to nap during the day because that affects how well I sleep. But, rest!
And, I too have a bad back. Exercise, damn it😝helps. Get some PT. I have taken Tramadol when I needed it (rarely). I woukd ask your hematologist and your pharmacist about that med (Im unfamiliar with it).
As far as alcohol, I use wine in my cooking but just don’t have much taste for drinking anymore. I do have one Vodka Gimlet for my birthday (old habits die hard) and so far no ill effects. But, I would ask your hematologist.
I’ve been on this journey for about five years. There are worse things!