I was wondering if anyone is suffering with the above?
I have read that it seems to be connected due to inflammatory markers and seems to be a ‘twinned/knock on effect thing’, I have a GP appt today (in UK)
I have had ankle pain for a while and brushed it off, also pain in my right wrist but recently I started with the most awful pain in my left wrist of where I went to pick up my cuppa one morning a few weeks ago and dropped it due to the extreme pain…from this I cannot grip anything with my left hand due to the pain in my wrist and a couple of fingers.
I have just started getting a bit of respite from it over the last week , typical once I got my appt 🙄 but it still hurts.
Just trying to get feed back from fellow sufferers
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Well that's too bad. I have found that my inflammatory issues have gotten a bit worse but wrote it off to age (76). However about 2 months ago I had similar pain in my wrists and shoulders which seems to be easing. I generally don't take anti-inflammatories and can't explain what happened. Have started kayaking and outdoor projects so maybe that initited the pain. I know there are inflammatory responses related to this blood problem we all share but can't add anything. Sorry and hoping your pain continues to subside.
I have ET, Jak2+ diagnosed in 2018 at the age of 59. I was diagnosed with arthritis in my feet just a year prior but have noticed lately the pain has radiated to my ankle especially on my right foot and ankle. I am not sure if it is ET related. Looking back on blood work my platelets were higher than normal since 2009 but no one seemed concerned. It was not until a mild heartache in late November of 2017 they found my platelets to be at 1million that more tests were run. It is difficult to walk for exercise some days, even a mile, will bother me for the rest of the day:/ Our bodies are very inflamed from this condition so I try to eat anti inflammatory foods. It does help but for me it is so hard to be completely gluten free:/ Best wishes and always reach out. There is always someone who can help on your journey with your MPN.
Thank you so much… I think because it’s a rare disease it just seems to be a minefield not only for us but for the professionals too…
I have come to accept that there can be a knock on effect to other things even taking certain medications but I am just wanting to find a balance and maintain a quality of life with it all…
I would give a definite YES to the excess production of inflammatory cytokines exacerbating issues like osteoarthritis. I have experienced the same kind of pain you describe, particularly in the hands. My rheumatologist suggested that I try a curcumin supplement. It made a huge difference in the osteoarthritis pain. It has been much more effective than any NSAID I ever took. My Integrative medicine doctor also recommended curcumin. In addition, she recommended L-Glutathione (or N-Acetylcysteine) and a resolving mediator (SPM Active). In addition, I (mostly) follow an anti-inflammatory diet.
There is no question that reducing systemic inflammation helps to manage the symptoms I experience. It keeps me functional and improves my quality of life.
Thank you Hunter for your reply, I have been to the doctors and I am having some more bloods and an X-ray done but he has also now referred me to the rheumatologist at the hospital so hopefully I can get the proper advice I need
That’s so interesting. I have arthritis in both knees, it’s really bad at the moment. This morning in bed I did wonder about the cytokine issue. I have started taking turmeric , glucosamine etc. I will look into L-glutathione. Thanks Hunter
I also have osteoarthritis in both knees, where i have also had meniscectomies due to tears. A few weeks ago I had hyaluronic acid gel injections into both knees. This is the second time i have had this done. It is an amazing treatment that restores my knees to nearly normal function despite the deterioration. This last time I used Durolane, which is a thicker single injection that is supposed to work better/longer. We will see how that goes.
I have found my a few finger joints painful and my hips especially , I wasn’t told et causes inflammation , yet I’ve told my consultant of my pain , I’ve felt like I’m going mad and not believed ,
That’s one of the most frustrating things with this disease and our docs, they totally gaslight us at times brushing things off but I actually believe it’s due to their lack of knowledge…😡
hello, I have ET jak2 + on 45mcg peg weekly and was diagnosed with rheumatoid arthritis about 18 months ago, already had osteoarthritis so not the best news. I really sympathise with you as the pain can be horrendous. After much debate between consultants I’ve been put on a biologic as I can’t take any usual medication for arthritis due to epilepsy meds. I found that compression gloves and wrist splints do help also trying to rest your hands and keeping them warm. I hope the hospital can diagnose you quickly to see if it is arthritis or not and give you something to relieve your pain. Good luck.
Hi - can I ask did the Epilepsy start after taking PEG, or did you have it beforehand ?I’m like you …. I started having pain in my hands, which led to being diagnosed with JAK2. Have been on PEG Interferon for 4 years and all of a sudden last year started having seizures, so now also on medication for that. Been advised by both Consultants there’s no connection -
I had Epilepsy for about 8 years before starting on Peg so mine was nothing to do with this medication. Everyone is different so maybe pursue it if you think that there might be a link. Good luck with it all.
I’ve had arthritis for over 30 years but it has definitely got worse since I was diagnosed with E T 4 years ago. Might be because of getting older? Or E T or hydroxycarbamide? My last worry is feeling of ice in my veins in my legs… and pins and needles in my foot.
Hope you can find some relief. Good luck and keep us posted
I too have ET and recently started having arthritis in my right hand. My thumb is very sore and when I bump it or try to pick up something I have terrible pain. I'm seeing my primary and he has suggested treatment. I will see him in about two weeks to check on this plus now I'm prediabetic. Not sure if this has anything to do with my ET.
yes, I too have Osteoarthritis, having had both knees and one hip replaced over the years. I do have odd pains too popping up anywhere but have put these down to my advanced years! However, recently I’ve been quite troubled with the hip I had replaced about 20 years ago, probably worn out! It does trouble me when walking. I’m ET JAK2+ on 500 mg HU.
Yes, I had osteoarthritis diagnosed in my left knee some years ago; I may have it elsewhere, but my left knee was absolutely awful. Then I was diagnosed with refractory anaemia and thrombocytosis (essential is not a word that has been mentioned). I would guess that the increase in platelets is connected to inflammation. It's just struck me that my compression fractures are probably more painful than they need be for the same reason. 💡.
Yes! I am ET Jak2+ since 2012. First two years I was on Hydroxea then on Peg different dosages and now I am on 45mcg every four weeks. Osteoarthritis in my right hip started just before I was diagnosed with ET but got worsen when I was on Hu. I went for PRP among very first patients receiving for two years, but it did not work, due to Hu that my body was saturated with. I had to have total hip replacement. Now I am having osteoarthritis in my left hip, my wrists, hands, basically the pain moves around my body mainly my joints. Curcumin supplements help and applying Arnica cream. Wishing you well and hope you will find something that works.
which medication are you taking? I think that’s a key. It’s so important to stay on a strict anti inflammatory diet it’s really huge. Also organic, No alcohol, no smoking. Doing everything to relieve the body of any extra burden.
I have ET and debilitating pain started in my feet and hands and wrists last summer because of Besremi. But it’s not rheumatism nor arthritis in my case. All went away when I stopped the Besremi for 2 months. The cause was an inflamed brain step caused by the Besremi. Diagnosis
I restarted at 50mcg on Feb 6 instead of 200 and I was fine. At 75 all ok. At the time I had an acupuncture needle in my ear that cleaned the brain stem. I went up to 100. Ok. Then I took the needle out of my ear 2 weeks ago and the pain started again. This Time in the back of my neck, shoulders, hands. I couldn’t turn my head in bed or lift it. Excruciating pain. Stopped Besremi and now have a magnet at the ear pressure point and pain gone. Trying Besremi again tonight at 50 or 75mcg. I’ll decide tonight and I’ll stay there. PLT are at 550. That’s great.
That’s interesting and the first time I have heard it can be the medication.
I am on interferon alpha and have been for coming up 2 years at various levels, started at 45, the 65, 90 (side effects to a certain extent) and then 135 but that caused total insomnia so, reduced back to 90 and ok for a long while but then started getting chills too regular and was quite ill with it, mentioned to Heam doc and asked if I could try reducing to 65 and see how I go.
I am currently having more regular blood tests for platelet levels until he is happy but been ok at this level.
No idea regarding this other than we have an autoimmune disease that appears to be directly connected to arthritis
I believe you are then talking about rheumatoid arthritis and not just arthritis. Rheumatism is autoimmune but normal osteoarthritis usually isn’t. In my research I have found many studies that prove that interfere on Alpha which is also. Besremi do you have a negative impact on the brain. With me, this is absolutely clear. It includes sleeplessness and brain fog and some loss of balance as well. Once it comes out of my system I recover for me. There are no other medication’s that come into question. HU causes severe neurological symptoms, including discoordination, and spacing completely out. Anagrelide has caused light heart damage which will get worse if I continue. Besremi reduced my platelets, and they stayed down for two months. Even after I stopped, interferon alpha could lead to remission after a few years, a remission that keeps for about three years! How amazing would that be?!? as long as I have solutions to combat the symptoms? I will keep finding a balance with the Besremi 🙂
If you have a known autoimmune (A-I) disease while on IFN you should be carefully watching all the A-I markers and any increase in or new A-I symptoms. IFN as its black box warning for A-I and I can attest a worst case result.
You can ask your Dr about the A-I related tests that are available, I posted a long list of what I got tested (after it was too late)
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