JAK2 Mutation - Effects and Questions

@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 thanks Christina it’s nice to know we’re not alone in trying to figure this out, I’m definitely interested in the holistic approach where somebody will join the dots and give helpful solutions, you seem to have much more access to a big range of services not so much here in Ireland but in saying that the Mayo clinic is very informative, it’s a good age to have health problems as we have so much access to information on the internet. I too have managed my diverticulitis with plenty of fibre , I use a product called inulin it’s a chicory root fibre and a probiotic and come in a powder form that you sprinkle on cereal or add to fruit juice and the good thing I like about it is that you don’t get bloated on it as I did with fibrogel , I get most of my supplements on IHERB and they deliver very quickly , just another question, I’ve to have a bone marrow biopsy next Thursday 11th and am feeling very anxious about it did you at any stage have one and how did it go?

@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!

@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! I am lucky to have the resources of Mayo near where I live in Arizona.
And, no, I have not had a bone marrow biopsy. At my first visit with the hematologist I have now, she told me that if the HU and phlebotomy didn’t keep things under control that would be the next step.
I expect one of these days it will be advised.
I completely understand your being anxious about it. I know I would be. What we haven’t experienced is usually all the more frightening. But, I’m 77 and I’ve learned from experience that almost anything we approach with dread isn’t nearly as bad as we thought it would be. I had a series of epidurals for my back before they were done in the hospital, under anesthesia and with ultrasound! I was in the doctors office sitting on exam table leaning forward into the nurse, tears pouring down my face….i survived that!
If you’re comfortable with your doctor/s then trust them and from what I’ve seen here, ask for drugs! And, my go to is prayer…when I had nightmares as a kid my grandma would have me say the Hail Mary over and over and like any mantra, I would fall asleep. So, if you’re not Catholic, just repeat whatever “mantra” you’ve got.
I’m certain your post will get plenty of reactions from others who have had the procedure.
I will think of you on the 11th and when you can please let us know how it went.
Christina

@roughanne
My GP gave me a low dose of Gabapentin three months ago. I had major leg cramps for years waking me up hourly! I've only had cramps 3 nights!! So far so good. I tried everything.

@christina3444 hi nice to hear from you again it’s appears we have a lot more in common apart from our medical issues, I too am 77yrs having just celebrated my birthday in November and also I have a great devotion to our Blessed Lady and pray nightly to her and I’m sure she has and will always keep me safe, I also do a weekly novena on a Tuesday to saint Martha (our Lady’s sister) and also Saint Anne her mother and my patron saint , you could say I’m keeping it in the family!!!!!! and like you you need to believe in something otherwise you can’t make sense of anything, I was on to my consultation this morning and told him about my side effects and has told me to come off Hydrea until they get the results from the biopsy which he is doing on Thursday and he will discuss other treatment options with me then so all good at the moment and just keeping positive, will be in touch when it’s all done 🙏

@christina3444 thanks Christina it’s nice to know we’re not alone in trying to figure this out, I’m definitely interested in the holistic approach where somebody will join the dots and give helpful solutions, you seem to have much more access to a big range of services not so much here in Ireland but in saying that the Mayo clinic is very informative, it’s a good age to have health problems as we have so much access to information on the internet. I too have managed my diverticulitis with plenty of fibre , I use a product called inulin it’s a chicory root fibre and a probiotic and come in a powder form that you sprinkle on cereal or add to fruit juice and the good thing I like about it is that you don’t get bloated on it as I did with fibrogel , I get most of my supplements on IHERB and they deliver very quickly , just another question, I’ve to have a bone marrow biopsy next Thursday 11th and am feeling very anxious about it did you at any stage have one and how did it go?

@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