Anyone else with Jak2 PV have difficulty walking and leg pain?

[Panda2014]

I'm new here and really happy I found this forum. I've been diagonsed with Jak2 positive PV a year ago, after feeling unwell for a couple of years, and after my blood tests have been abnormal for quite a while. For the past year, I've been on aspirin and Phlebotomies, which have kept my Hematocrit under control, though my platletes are always in the 600-700 range. (WBC also a bit hight) I have started Besremi last week.

I have many PV symptoms, most of which are considered classic, (fatigue, brain fog, ringing ears, headaches, hair loss due to low Ferritin/iron decifiancy, or as my MPN specialist says, might be caused by the PV itself) but there's one thing which is really bothering me and having a negative effect on my life and which my MPN speicalist has no explanation for, nor do other doctors I've consulted. (Including a Rheumatologist. )I have never been a big walker and have had foot pain most of my life, (flat feet and other minor issues) but for the past year or so, walking has become painful, especially on an incline but not just. (I can hardly walk up stairs without having to rest between flights, also get shortness of breath after one flight of stairs.) The pain is mainly in my thighs, but is now also in the back of my shins and calves. My legs feel extremely heavy all the time but the pain I'm having is new and it seems to be getting worse. I also have constant pain in my right thigh, like a streched muscle. I had an Ankle Brachial Index test done to check if there's a problem with blood flow to my legs but the test was OK. (Even though they didn't really have me do anything except go up and down on my toes to simulate walking.) I asked my doctor if my pain/difficulty walking can be caused by the iron defficiancy and he said Maybe, but also said he's not familiar with leg pain/difficulty walking as a symptom of PV. I do mild excersise, walking on the treadmill, which strangly, does not cause me pain. I also do Pilates. I'm 59, (female) but this issue with my legs is making me feel like I'm 100.

I take Magnesuim/calcium and other supplements which are supposed to be anti inflamatory, like Olive leaf extract. I also take a chinese medicine formula which is suppose to support bones and help with Menopause symptoms. Been taking it for about 10 years.

I was wondering is anyone else has experienced this or if anyone might have a clue to what might be going on. I had my CPK and CRP tested and they were normal.

Thank you very much!

[hunter5582]

I expect you already know that the JAK2 mutation can cause the overproduction of inflammatory cytokines. This can cause or exacerbate other inflammatory issues. While the MPN may not be causing this problem, it might be making things worse. Your MPN specialist would give the best read on this part of the issue.

The pain is telling you something is wrong, but so far it is a mystery. It is a mystery worth solving. I would suggest consulting with a Sports Medicine doctor. Perhaps that perspective could provide some insight that others have missed.

Wishing you all the best and success getting to the bottom of this issue.

[Panda2014 in reply to hunter5582]

Thank you so much hunter5582. I've been reading your replies to other people on this forum and was hoping you'd reply. You seem so knowledgable. I know that something is wrong, but the big mystery is if the something is PV itself, PV related, or a whole other something. Seeing a Sports medicine doctor sounds like a really good idea, but I need to find someone creative and open minded because this is not related to sports activitiy, just good old, plain, walking. Not even a distance. But I will look into it.

Do you have any recommendations for a natural supplement which might help with the inflamation? I started taking Milk Thistle in order to prevent liver damage from the Besremi, having read some posts here about its benefits.

I'm hoping Besremi will be effective in lowering inflamatory Cytokines, whether or not they are the cause of this. And I'm hoping I'll be able to tolerate it.

Thanks! Hoping you are doing well.

[hunter5582 in reply to Panda2014]

I was thinking Sports Medicine as an out-of-the box answer. Perhaps someone who regularly deals with muscular and skeletal pain would see something other doctors might not. The other out-of-the box medical thinker would be an Integrative or Functional Medicine doctor. These docs would be the most familiar with complementary health interventions.

The most effective anti-inflammatory supplement I have used is curcumin. Note that some supplements are worthless. You need to use a bioavailable formulation. I use a formulation recommended by my Integrative Medicine doc, CurcuWIN. It is found in various brands, including Spring Valley, which is carried at Walmart. I also use L-Glutathione and SPM Active. The regimen does make a difference for me.

Wishing you all the best.

[Panda2014 in reply to hunter5582]

Thanks hunter. I will look into Cucrumin and maybe a sports doctor as well. Couldn't hurt.

Wishing you all the best as well.

[MrTrippy in reply to hunter5582]

Thanks for the info, Hunter. Looking at Curcurwin, the internet says it also thins the blood, which is obviously an issue for MPN patients, many of whom will already take aspirin. Do you mind my asking: does this apply to you and/or have you discussed it with your physician? I ask because I’m looking for a suitable anti-inflammatory supplement (I have PV/JAK2) but as I take a daily aspirin I don’t want to overdo it with blood thinners.

I’m on the UK Rusfertide trial btw — I’m new to this site and once I’ve collected my thoughts I will post them here. It would be interesting to compare them to any others who’ve been part of any similar trial.

[hunter5582 in reply to MrTrippy]

While there can be some potentiation of aspirin by curcumin, I have found the effect to be negligible. I have experienced no increase in hemorrhage. My Intergrative Medicine doc recommnded CurcuWIN and my MPN care team is aware that I am using it. I also take L-Glutathione and a Proresolving Mediator. There is no question that the anti-inflammatory regimen improves my quality of life and I consider it well worth whatever risk may exist.

I am glad to hear you are participating in the rusfertide clinical trial. it is a promising treatment that I expect will prove superior to venesections for treating PV. Please do let us know how you get on with it.

[EPguy in reply to Panda2014]

Hunter's comment on Sports medicine is actually part of the category you're after. It is related to physical therapy (PT), osteopathy and the like. I was treated at PT last year and the terms were sort of interchangeable as were the pts there. It's all about addressing physical and mechanical troubles in the body. Sports is one of many ways to break a body.

--

On cytokines IFN is in fact a cytokine itself as noted in this antique report (1994)

"Interferon (IFN) alpha, the first cytokine to be produced by recombinant DNA technology"

ncbi.nlm.nih.gov/pmc/articl...

IFN can both reduce and increase inflammation and this is part of how provides its benefits and its varied effects. By controlling the MPN with Bes you can look fwd to relief.

Rux is more explicitly a mild anti inflammatory and its cytokine inhibition was studied for covid (not much came of it)

[Panda2014 in reply to EPguy]

Thanks so much for your reply. I'm hoping Besremi will have a positive effect. I was very reluctant to take it, or any other Cyto reductive medicine, but worth giving it a try, I guess.

[MPNJoe]

i am jak2 PV and I have feet and leg pain all the time. I think my bones just hurt all the time from the PV and I haven’t found a remedy yet nor has my hematologist.

[Panda2014 in reply to MPNJoe]

Sorry to hear about your constant pain. It must be frustrating not to be able to find remedy or at least some relief. I don't understand why bones would hurt with PV. I can imagine muscles/vascular pain. Anyhow, I hope you find something that will ease the pain.

[mark382]

I woke up 18 months ago and couldn't lift .y feet off the floor to get dressed. Saw a physio and helped a bit. The pain was in every muscle from my belly button down to my ankles, but not my feet. GP initially thought it was polymyalgia. Blood Test didn't show any inflammation. The pain was the intensity of cramp in every muscle when I asked it to move. If I sat down it would go. Got referred to muscularskeletal at hospital. More excercises, which helped. They said that there was now evidence to show that covid can cause muscle and nerve damage. Also saw an ex Premier Division first team doctor and Clinical Director as thought he should be upto speed on muscularskeletal problems. Had full work out and said there was nothing obvious and wouldn't benefit from MRI scan. Keep up with physio. Spoke to haematologist consultant and she didn't know. GP put me on oramorph. Great to get high, but didn't touch the pain. GP then put me on Pregabalin. That helped, but made me drowsy. I now take one at night. Still have issues, but not as bad and keep up with my physio excercises. So basically no body knows the cause. But I can at least walk pain free most days. So have no answer but at least you know others have similar. I've had PV for 16 years. JAK 2 negative and on Aspirin and venesections.

[Panda2014 in reply to mark382]

That sounds so scary, not being able to lift your feet off the floor, and the kind of debilitating pain you had. I'm glad you found a medicating that helps a bit with the pain. There's so much the doctors don't know, it's frustrating. Wishing you all the best. Thanks for replying.

[ainslie]

not sure about the leg pain, I don’t think it’s a typical PV thing especially as your ok on a treadmill, the out of breath bit could be related to iron deficiency, I used to find that when I was very iron deficient, venisection reduces the size of the red cells (MCV) , when mine was down to 57 I could feel a bit out of puff sometimes.

[Panda2014 in reply to ainslie]

Thanks for replying. I guess I'm going to have to live with not knowing what's causing this, and hoping Besremi will help, eventually.

[Cassandra61]

I hope you get something useful for the leg pain and get back to the walking you enjoy. You have coped really well, by the sounds of it, with all you have got going on. Let us know how you get on, we are here for you.

[Panda2014 in reply to Cassandra61]

Thank you so much! I appreciate your kind words. Wishing you all the best

[Pogm]

I have been on Besremi for 10 months and recently added Jakafi to control itching. I noticed while on Besremi only my big toe began to have pain and then other individual toes. Jakafi seems to have ramped it up. I had a nerve conduction test done which was negative for peripheal neuropathy and going to rule out gout as well. It may be erythromelalgia, which is somewhat prevalent in MPNs. Unfortunately( but needed) more and newer research is revealing secondary conditions that are related to PV and other MPNs that are distressing to patients, and still bewildering to the majority of hematologists. The benefits of cytoreductive therapies such as Besremi are well worth the "trip". Look into sports medicine and see if there are other answers. Good luck!

[Panda2014 in reply to Pogm]

Thank you very much. Hoping that Besremi works for me.

[DaisyJayne1]

So sorry for your struggles and frustration. I would highly recommend finding an integrative/functional medicine doctor. I do believe that PV may be the biggest culprit causing many of your symptoms, but there are approaches that can moderate the level of iron deficiency (loss through diet and enzymes blocking absorption more profoundly than just PV /treatment alone). Anemia is an expectation with PV, but there are other causes of anemia that could be making it worse, and could perhaps lessen the degree of the symptoms you are having, if treated correctly. Treatment for anemia can be directed at elimination in diet to some degree. Obviously, it has to be well worked up and thought out, so as to not worsen the PV. While this video is not directed towards people with PV, it does show many other causes that contribute to anemia. Best wishes for some relief.

m.youtube.com/watch?v=6RPRz...(Not working as expected?)

[Panda2014 in reply to DaisyJayne1]

Thanks so much for replying and for the information. I will check out the video you sent. I'm hoping that maybe, eventually, Besremi will help alleviate some of my symptoms. Hopefully, it won't make them worse. All the best to you.

[Hidden]

Hi Panda, For me JAK2 and PV since 2 years) it was interesting to read your message since I have had nearly all of the same symptoms as you with my legs. Not so much pain in itself but severe discomfort; the sensation of heaviness never seems to go away albeit the intensity can change during a day.

I still have the difficulty you describe climbing stairs; the out of breath even on a mild incline (except when taking it really slow) and recently both feet felt like they had lead in them esp sitting down - but after two weeks this has diminished. Tingling toes and in bed sometimes I feel like I don’t have any feet but know they are there as I wiggle my toes. 😂

I have been on Jakafi after a short spell with hydrea which caused untenable nausea throughout….

To date my haematology team has not come up with any solution for reason for this side effect, so I live with accepting that it is just that altho I’m possibly going for a 2nd opinion at another Haem Dept, further away from where I live.

Wishing you luck in your pursuit of solutions.

[Panda2014 in reply to Hidden]

Your symptoms sound a lot like mine, The heaviness in the legs, especially, but I understand yours diminished, so that's good. I'm sorry you had such a hard time with Hydrea. I just started Besremi and hope I will be able to tolerate it.

It's so frustrating that nobody has been able to come up with a reason or solution for the leg pain/heaviness etc. I guess, since it's not so common in PV, nobody has really bothered looking into it. It's hard for me to accept that I have to live with this, but for now, I guess I have to.

I hope you're going well on Jakafi.

Be well.

[Hidden in reply to Panda2014]

Thank you Panda2014. Yes, it was somewhat reassuring to hear I wasn’t alone. It is indeed accepting to live with it and taking it day by day. Keeping positive keeps me sane and I have enough in life to not make dwell on it.

Be well and all the best.

[Junuary]

I had similar leg pain. It was excruciating. It turned out to be blood clots from interferon. I ended up in icu with multiple strokes. I had every test under the sun, including ultrasound for clots, and they all came up negative until I finally couldn’t get off the floor and they found a blood clot on my spleen and shortly had them in my brain. I had the leg pain from about a month after starting pegasys until two weeks after stopping it. Hematologist admitted to me that it was the interferon but wouldn’t write it down or report it. Numerologist felt certain it was and also said that tests can’t detect small blood clots. It was a terrible time but I’m glad I stopped the interferon on my own. I’m certain I would’ve died. Hydrea is much safer.

[Panda2014 in reply to Junuary]

I am so sorry to hear about your terrible ordeal! Very very scary. I know medications are a double edged sword, but I'm hoping for the best. Wishing you all the best.

[LIGEBA]

Hi Panda2014. Sorry to hear you are experiencing the leg pains and all the other symptoms. I also suffer from leg pain that started in the backs of my thighs then eventually moved to my groin, hips, calves, ankles and feet. In fact the pain in the back of my thighs was one of my first indicators that something was definitely wrong (the first was the extreme fatigue that would come over me out of the blue). Eventually I was tested for and found JAK2 positive and diagnosed with ET by 1 doctor and PV by another. Now they are all in agreement it is PV. I take aspirin and do phlebotomies when needed.

I got to the point I could barely walk, couldn't do steps (which left me basically home bound), and spent a good deal of time in pain. One of dr.s so how miserable I was and sent me to PT & OT. It took many months of hard work and very patient therapists, but I did see a major improvement not just in my legs, but many of the other symptoms I was experiencing. Unfortunately I had a setback and could not do the therapy or anything else for quite a bit of time so many of the symptoms started to come back. I'm getting ready to restart therapy in the hopes that I'll get back to where I was.

On a final note, I had the same where walking on the treadmill did not seem to cause me the same pains in my lower extremities. A therapist explained that the reason is most likely because I was holding onto the handrails thus taking some pressure/weight off my hips, back, and legs. It seemed to make a lot of sense. The breathlessness unfortunately seems to be a part of PV that many of us experience from time-to-time, and perhaps a bit worse if doing phlebotomies.

I hope you find something that helps your pain so you can do more things. I truly sympathize with you because feeling so limited is an awful feeling. Best of luck!

[Panda2014 in reply to LIGEBA]

Thanks for your reply. Interesting, what your PT said about the treadmill. I have a theory of my own that the pain might be caused by slow blood flow due to the "sticky" blood that PV causes, and that vigorous walking (as opposed to just regular walking, in and out of the car or on errands,) stimulates the blood flow much faster, getting that sticky blood to flow faster, avoiding pain. My gut instinct tells me that this is a blood flow issue and if things don't improve I'll insist on getting more extensive testing. Maybe I should see a vascular specialist. Best of luck to you too.