Hi there. I've been on hydroxy since diagnosis for ET in July 2022. In Dec 2022, I had a painful coccyx and sacrum area. This extended to painful hips and thighs. Going from sitting to standing - everything is very stiff and uncomfortable. I loosen up after a few steps but have been very worried about this. The pain, whilst not excruciating, is waking me up at night when I move in my sleep. I spoke to haematology expecting them to confirm it is either a side effect of the drug or a symptom of ET but they said 'definitely not'. So I've had lower back MRI and a hip scan which showed nothing untoward thankfully and then physio which hasn't made any improvement. I recently had a nerve conduction test which showed no problems. So in the MPN community's opinion, are haematology wrong - and these problems are related to hydroxy and/or ET? If so, are they likely to get worse as time goes by? Thanks so much for any replies.
Bone pain or it is muscle pain?: Hi there. I've... - MPN Voice
Bone pain or it is muscle pain?
Back and joint pain are reported as a potential side effect of HU from some sources.
mayoclinic.org/drugs-supple...
lls.org/drug/hydroxyurea#:~....
However, we can get this kind of pain for other reasons. The MPN may contribute to the pain due to the pro-inflammatory environment the deregulation of the JAK-STAT pathway causes.
I also experience chronic lower back pain that sounds similar to what you describe. In my case, it is related to the hip flexors tightening up and the pain and tightness is referenced to the lower back. Stretching does help when muscle-tendon tightness is the issue. I do stretches, practice QIgong (Tai Chi) and see a massage therapist on a regular basis. This keeps me functional and largely out of pain.
It is very easy to tighten up when sitting too long. I make it a point to get up and move around if I need to be sitting for long. It makes a big difference.
All the best.
Thank you so much … just confirmation helps I am seeing a physio now an app with exercise but I think I will try Qigong
Thanks so much Hunter. I had been wondering if sitting is exacerbating the problem - I have done a sedentary job for many years. I know a bit about A&P and thought it was the hip flexors tightening. It's disappointing that my haematology team don't recognise it as being drug or condition related - I could understand it, if it was - but didn't just want to assume - in case I have another chronic disease! Hoping that I haven't. Take care.
I also experienced bone pain in my shins, but I never had ET, just PV. I also couldn't take Hydroxy for long enough for it to result in bone pain. So I attribute it to the disease itself. I know this is not the case with everyone, but when I started taking Besremi, the bone pain gradually went away. I had to switch to Jakafi a number of months ago, but so far the bone pain hasn't returned.
Thanks so much. Stay well and bone pain free 👍
I also experience bone pain in hip, thigh and shins. I have PV. I am sure its related.
I also experience bone pain in shins especially climbing stairs or uphill & uphill slants. I have PV and am on Jakafi.
How are you doing on Jakafi? I seem to have pain in the areas I have injured myself, such as my broken ankle and where I fell on my shoulder. I also am getting sores on my face since taking Jakafi. I've been on Jakafi for a month and 1/2. I'm now off hydroxyurea that I've been on for 2 yrs. I have Essential Thrombocythemia.
I’ve been on it since about 14 months, and generally doing well although i find I’m easily tired and tend to have a lot of tingling in toes and some pain around a Bunion area I was operated on. It’s difficult to say whether that’s the PV or the Jakafi, so I tell myself best to take things day by day. The Jakafi is mainly to keep bloods and platelets on an even keel, and in that respect my haematologist is satisfied with results. Im sorry to hear about your facial sores. I hope you can get the reason for that cleared up with your specialist team… and find out if it is related to Jakafi…
Hope this helps. Good luck.
I can say that on the short time I was on Hydroxy everything ached but pain went once I came off it .. Now on Interferon . Julia 👍
I have ET with JAK2+. have intermittent hip and leg pain from the start of this journey. I also have tried hydroxy, then Anagrelide and now Peg that I’ve been on since March. The discomfort level was much much higher with hydroxy, has gone down along the way over 18 months but still remains with Peg. As noted already, it starts in particular from rising and moving after being immobile. Stretching legs first and taking things slow upon standing help. It also can appear going up stairs and hills so I know to take it a bit slower to avoid pain. Been noticing it more now as the beautiful fall leaves are coming down and require raking. After a short while the bending and twisting really hurt. I can take up to 2 doctor approved 385 Tylenol per day time as I also take 1 low dose aspirin each night for platelets. I tried taking a Tylenol before starting raking and it did lessen but not stop the pain The pain is an intermittent nuisance but manageable. Hope you find ways to handle it, too. Stay safe!
I was diagnised with ET and started on Hydroxy in April so its early days yet. However don't you think age has something to do with akes and pains as well as the above. I am nearly 70 and have been involved in heavy physicall work since my early 20s as a nurse and over the last 30 years as a Farmer. I've had back pain and shoulder and neck pain for over 10 years but it comes and goes depending how busy I am.Many of my friends are far worse than me at this age requireing hip and knee replacements and many are far less mobile.
Its important to keep moving like Hunter said ,sitting down for long periods is not good for anyone at any age.
Its easy to over think symptoms when you have a new diagnosis, I know because I do it myself all the time.
Hi, I have chronic nerve pain which pre dates ET and JAK2 positive. My pain is exactly the same locations. I find Neve Glide exercises really effective. There are lots of videos on YouTube. Of course it might be joints which are affected and not nerves. Hope you find a solution.
Bone pain was one of the problems I had while undergoing medical investigations on the way to diagnosis of ET. I still have the pain despite HU getting platelet numbers into healthier range.
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