JAK2 Mutation - Effects and Questions

Thank all of you for the good info and good wishes. I'll make note of your suggestions, too. I'll also update after my next doctor's appointment near the end of September.

Stay well.

@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

@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!

@christina3444 thanks Christina it’s great to connect with others with similar problems, and now I have another-problem I would like help with ,I’ve now been told that the problems with my legs ,burning tingling and sensations at night which I’ve had for the last three years is restless legs syndrome and now don’t know where it fits in with the PV diagnosis and what if any medications I can take to help as I’m worn out with lack of sleep 😴 between having diverticulitis (managed) kidney stones, very large gallstone (on surgical list to have removed)NAFL arthritis in my back , the PV and now restless legs I’d love to know if anyone has multiple health problems like mine and how they manage and instead of attending different specialists (costing me a fortune) if there is any one type of doctor who could deal with everything and put a plan in place , all answers gratefully received

@roughanne Hello. Well, we have diverticulitis in common as well as the RLS and the PV. After a colonoscopy years ago, the MD told me not even a polyp but I had diverticulitis. I asked him what to do and he said “Eat more fiber.” Subsequently, I never have had any conversation with any MD about it. I’ve always eaten a lot of fiber, and still try to.
The legs I’ve self diagnosed based on what I’ve read and I believe it is one of the results of taking HU as is the exhaustion.
I have a tendency, at my age more so, to consider my overall well being (you know, being alive and mostly well😂).
Once I got past the fear of the PV diagnosis and realized it could be managed, I felt better.
Aside from my hematologist, the Physiatrists I’ve seen at Mayo, have helped me the most. I had never before heard of this specialty. They specialize in Physical medicine and rehab, treating non-surgical conditions affecting muscles, nerves, bones and joints. In plain language I think they treat the “piece” of medicine an old fashioned GP treated by listening to all your complaints and treating what can’t be fixed with surgery. Maybe find a good one in your area? I think that would be a good place to begin. And, I think PT is part of the answer.
I hope this helps and please stay positive and keep posting.

@roughanne
I have the burning and stinging also in my shin bones from the top of my feet to my knees. I honestly think it’s the PV not the meds. Looking back, I had these symptoms before my diagnosis so I hadn’t begun the hydroxyurea yet. It comes and goes and I try to pretend it’s not there. I too have Diverticulitis! Maybe they should do a study? Three people who just had a conversation with PV is a big coincidence. Good luck to all of us..

@christina3444
Just saw this and was surprised to see your mention of diverticulitis .. I too, was admitted to the hospital for intravenous treatment for it since they saw infection on CT
Only one time
I have PV with Jak 2
Discovered when I had a
stroke and two DVT’s in 2018. Had just two phlebotomies, the just
Hydroxyurea and Eliquis since. Counts are good
Best wishes to you

@irishnanny3 Hello. Based on what I have read about PV, it appears to me that there just isn’t a lot of research about it at this point. Until you have a stroke or develop a blood clot and it’s determined you’ve got PV/JAK2, nothing. But, reading what I’ve read in this forum, there seems to be indications that suggest there may be other conditions that are precursors/warnings such as diverticulitis. Or, not!
I had terrible pain in my knee the day before I was to visit my GP for a regular blood test for thyroid. That turned out to be gout! But, for that coincidence I probably would have just taken a pain med and used Aspercreme.
I’m glad you’re doing well! Last time I had blood drawn my hematocrit (that’s my indicator) was as good as it’s been in 3 years!
I only wish they could tell me why!

@nypara66 Hello. I know you’ll see my response to irishnanny. Yes, I wish there was more study to determine the connections between something like diverticulitis and PV.
I never had any RLS or cramps in my legs before my diagnosis and the Hydroxyurea. But, what so obvious from everyone on this forum is that there are a lot of different reactions to the HU and PV symptoms vary a lot.
Yes, good luck and good overall health to us all!

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.