Shoulder and hand pain

[Heather270240]

Hi I have ET JAK2 diagnosed 2017. I am on Hydroxycarbamide 500mg a day. Recently my blood count went from 450 to 630 with horrendous fatigue, which is far worse than normal and also pains in my shoulders and hands which I have never had before. Can anyone tell me whether the pains are connected with ET please? My Haematology nurse said no.

[Mostew]

I have JAK 2 pos. not taking meds yet as trying natural supplements first . My platelets fluctuate a lot . At moment 730 . Have been 900

BUT I have lots of energy . Only unusual thing I have is sort of ringworm on back that stings . It keeps nearly going then flaring up .

So think it’s so hard to say what is caused by what !!

Are your other bloods ok ?

Hope you can find out what’s going on xx

[Heather270240 in reply to Mostew]

As far as I am aware other bloods OK. So a mystery.

[h2ogal]

Hi,

I am having the same problems for the last 6 weeks. ET, Jak2, hydroxy. Everything seemed to be going Ok then the next day shoulders, upper back, and hands very painful, even hurts to drive. Platelets went up. Added more hydroxy and stopped doing even the mild exercise I was doing. Dr. thinks it might be fibromyalgia but waiting for covid19 to calm down before going to see a rheumatologist as it looks like there is nothing they can do for you if it is, but it would be nice to know.

Hmmm, platelets increased and so does pain, sounds connected to me...

[Heather270240 in reply to h2ogal]

Thanks for your reply. It doesn't seem like fibro pain or PMR because it doesn't go away if I take codeine or extra steroid. Nurse told me not to increase hydroxycarbamide. A bit of a puzzle but very painful.

[Trocken]

Have you had your b12 checked, I struggle with fatigue, altered sensations in my arms and a weaker grip when my b12 levels drop, I have b12 injections every 10-12 weeks and what a difference it makes. Look on the nhs website at b12 symptoms! I hope your feeling better soon xx

[Hidden]

Like Mostew, I also have ET Jak2+, platelets around 1200 and loads of energy and no aches. Not on any Drug treatment, just vitamins, healthy eating and exercise.

Definitely worth getting your other bloods tested, especially thyroid - TSH, free T4, FreeT3, iron, ferritin, B12, Folate and vit D

My initial symptoms that I saw gp about resolved with B12.

Maybe it’s side effects from the hydroxy?

[Wakeboarder]

Hi

I have experienced the same thing re shooting pains in my legs and arms. Originally the doctor said it wasn’t related but recent has changed that view and thinks it is erythromelalgia a secondary form of which is linked to ET. My platelets were heading for 1000 and the pain was getting worse and worse. Doctor put me on hydroxy and now down to 730 with much reduced pains.

[azaelea]

I have just developed pain and stiffness in my left hand over the last couple of weeks and been wondering if it's related to my ET JAK2+. It's worse on waking and gets a bit better as Day wears on. I also suffer with PMR so don't know if it's that as I'm trying very hard to reduce my Prednisolone which I've been on small dose for years,so might be that!! Due a blood test and Haemo consultation this week but not sure what's happening because of Covid!

[Heather270240 in reply to azaelea]

That's amazing because I also have PMR and trying to reduce my Prednisolone. I have had it for 10 years and was down to 6.5. I increased to 10 for a few days to see if it's a flare but it didn't help. Mine wears off late morning after taking a couple of codeine. I also had GCA and lost my sight in left eye 10 years ago.

[JackLina]

Hello. I started hydroxy when first diagnosed and within three weeks I had lost the use of my thumbs and was in such pain in my hands that I could not use them properly. The fatigue was unbearable and I ended up 'literally' on my back without the energy to think or do anything. so ill I felt I was poisoning myself with every dose.

I eventually managed to be prescribed Pegasys, which has suited me well, reducing my platelets levels and although affected by all the side effects, of huge benefit.

I have also found that every symptom I have ever mentioned to the haema or the nurse, without exception, is 'nothing to do with ET or the drug! It seems to be a standard response. I now changed my haema so I could feel I was being taken seriously. All the best. Hope you sort this all out and soon feel a lot better.

[azaelea]

Hi Heather, that's really funny, us both having PMR. I've been on Prednisolone since 2000. Started on 20mg when it miraculously got rid of the awful pains,then reduced through the years and was on 2.5mg maintenance dose for a long time till a flare up in 2018 and was put up to 5mg. Currently trying to get to 2.5 mg again. Can't manage to eliminate it altogether. Sorry to hear about your sight in left eye. Take care. Regards,Fran

[hunter5582]

While peripheral neuropathy is a possible side effect of HU, it seems unlikely to be what you are experiencing. Since you are JAK2 positive then what you are experiencing may be related to an overload of inflammatory cytokines produced by the JAK2 mutation. This excess cytokine production is thought to be responsible for many secondary symptoms we experience. Unfortunately not all docs are up to date on this. Do bear in mind that we do exerience issues that are unrelated to the MPN. It is really tricky to sort out sometimed.

[Heather270240]

Many thanks for your comments. It seems a very complicated illness especially the JAK2 aspect which I could never understand until you explained it. Mine is complicated because I have Polymyalgia Rhumatica as well and they both have similar symptoms.

[Mardigras]

Hello Heather,

I too have ET Jak2+.

I frequently have pains in my hands and feet. I have taken up knitting which seems to help a bit with the hand pain. I don’t know for sure but I think that the gentle exercise of knitting is helping the pain in my hands. I have spoken to many people with ET over the last few years and I believe the pain is a symptom of the disease. Some heamatologists are sceptical.

Hope you feel better soon.

Sorry I can’t help further.

Hugs,

Marcia

[Heather270240]

Hi Marcia. I to think it is a symptom of the desease but like yours my haemo said no. However I have just watched a video on the MPN website which is about the pain we get and possible reasons.