MPN Voice
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Thinking of stopping my chemo

Hi, I've had TERRIBLE bone pain in my shoulder for over a month now. Even doing the simplest thing has me crying out in pain, it even wakes me from a sleep. Paracetamol does nothing. I never had pain like this till i started H.U 😣😣 any onr else ?

Doc checked my uric acid and it's not gout. Rheumatoid factor is now raised.

Want my old life back 😔😔😔

Best wishes lainy xx

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Oh Lainy, sorry to hear you are in so much pain. I have been on Hydroxy for well over four years now with no problem, but before I went on it I was taking statins, and boy the joint pain I had with these tablets was awful. Made me very depressed, this went on for a few years, with the docs trying different ones but to no avail till in the end I took myself off them, changed my diet started to get fit and drink loads of water, so when I went on the Hydroxy I was worried that the joint pain would come back being as it is such a toxic drug, and so far so good, there are times when I get quite stiff and my joints hurt especially after gardening and have to soak in a nice bath, but I know how you feel. Talk to your haematologist before you do anything to see if they can try something else it’s not for everyone but talk to them first about your concerns.

Jean

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So sorry you are in so much pain. Sending loads of E hugs just to let you know you are in my thoughts. Kindest regards Aime xx😺😺

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o dear. try the local pharmacist and try different type pain killers, of which there are 3 or 4, even worth trying ibruprofen alternate with paracetamol. but as to cause of pain? ???

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Hi Jane, my gp said at initial diagnosis that I can't take ibuprofen or diclofenac due to platelet levels and im already on asprin but now on clopidogrel.

Ive got tramadol but they are like a sedative for me and I sleep all day after taking them 😪

Best wishes lainy xx

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o dear...but still worth talking to the pharmacist maybe????

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Just thought of something else...could u have a "frozen shoulder"? I had a few years back and apparently (forgotten why) we are more susceptible to them. It's the sort of pain u get on movement and restricts your mobility. Usually they try an injection (best to try and get from the orthopaedic dept if u can) if that doesn't work they put u to sleep for 5 mins while they manipulate the joint free.

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Doc thinks it's inflammation of the shoulder socket joint said to take paracetamol. She much more interested that my heart rate was quite high BP of 100/70 and I'm having dizzy spells. My heam said dizzy spells nothing to do with hydroxy or E.T so doc referring me to cardiology. Ohh no please dont find anything else wrong with me 🤔 xx

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Oh, lainy, I thought you were buzzing. A while back you sounded so bright and on top of it, I was positively envious 😉 but this is what I keep finding, big waves of problems. Feeling for you, lots of Ehugs,as Aime says. Xxx

Ps I want my old life back too 😔

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Thanks aime, i am still over the moon platelets are within normal ranges but I do feel that these cytotoxic drugs are hard on our bodies.

Best wishes lainy xx

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I don't know whether it would be the hu causing the pain. It could be anything from a trapped nerve to arthritis. Try asking your GP, who may or may mot be helpful ! Have a word with your pharmacist and see what they recommend, you could also try a TENS machine. Hope you're feeling better soon x

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Sorry to hear this. Agree with others. I would contact your consultants secretary to see if you can get your haematologist appointment brought forward first. Once you have a diagnosis/permission maybe consider tens machine or other complementary therapies including acupuncture if they cannot help..

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Hi Lainey so sorry to hear you are in so much pain, but you must speak to your GP about pain relief or maybe a referral to the pain clinic, and you must also discuss this with your haematologist, you must not stop your medication without discussing it first with your haematologist. Best wishes Maz

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Lainy,

So sorry to hear of this pain. I can almost feel it with you -I had dreadful hip aches a year ago but pilates helped those-am I right in thinking your shoulders are not main bone marrow areas? in which case maybe it's not the hydroxy? Might physio be a thought?

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Thank you everyone for your advice and kind words.

Still on them but missed out my dose of three tabs last night.

Going to speak with my heam next month and see xx

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Hi Lainy, I too have very bad shoulder pain but it's nothing to do with my medication or MPN (although that can make any bone pain worse I believe) but is due to bad arthritis in the shoulder. I'd suggest you see your GP and ask for a shoulder x-Ray and perhaps an ultrasound to rule out possible arthritis or/or soft tissue damage. Best wishes, Frances

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I experienced very similar 'pain' especially in my shoulders plus a dry cough, when put on to three tabs daily last month. This happened overnight three capsules when I went to bed and whm next day just awful, two more days and enough was enough. I just was wiped out and as I have a husband at home on pallative care I decided, as I need to function at some reasonable level, to return to 2 tabs daily and emailed my haematologist to tell him what I was doing and why. He replied that he didnt think it was the drug but concured.

I take the view that I dont wish to have a thrombosis and wish to eliminate the risk caused by this mutation, I am PV Jak+ and CLL but I need to also listen to my body. Since dropping the dose I have felt alot better, will be having a blood test on friday plus seeing the consultant it will be an interesting conversation!

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Hello nanmc, I am so sorry to hear you are going through so much and are looking after your husband who is palliative too. Thank you for taking the time to give me some advice, I also believe it is the drugs that has cause this constant awful pain bit as you say we need to listen to our bodies. I've only got a few weeks till i see my consultant so I am drooping the third tablet at the weekends. My platelets were within normal ranges the last appointment anyway, so I feel I am not going to harm myself by taking that action.

Best wishes lainy xx

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Hi, I had the same problem a few months ago till I started swimming and gently at first exercising in the sea. The pain went away and I could again fasten my bra. Now that I stopped due to Autumn swimming I had again some pain but nothing like before. I plan on starting yoga lessons during the winter. The pain was excruciating especially when lying in bed, don’t know though if there is any link to ET. By the way I am not on Hydroxyurea.

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I'm actually away at a spa hotel for a few days just now to see if rest helps. Well,I went for a gentle swim,sauna and woke near in tears at 2 am with the pain going from my shoulder down to my wrist. Just want to go home now 😣

Yes, I'm the same as you it's the worst during the night when lying down.

Paracetamol is useless but might be forced to take tramadol I've got in the house when I get back 🤢

Thanks for sharing your experience jelly.

Best wishes lainy xx

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Lainy from my personal experience I think you should persevere. After a while the pain had completely gone! In the water it was easy to exercise without effort. The doctor said shoulder is one of the worst body pains and suggested swimming and yoga also for my knee joints.

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Trying very hard to keep going with tabs but it's hard and easy to blame them. With work full time and busy life it's hard to fit in swimming.

I suppose it will go away as quickly as it appeared. It's making me short tempered, my family very patient with me and don't deserve it 😯

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I know what you mean. What a pity though that our lives are so hectic that we don’t have time to devote for ourselves. All the best I wish you!

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Hi Lainy, I'm really sorry you're having such excruciating pain. Have they done any "scans" of that area: X-ray, CT, ultrasound? It seems like they should check to make sure you didn't fracture it or have a nerve pinched by a muscle or joint. Some women fracture bones without even knowing when it happened. Please ask your docs to be aggressive in searching. Sending lots of Aime e-hugs to you. Xxooo Katie. PS please keep us posted on what they find and how you're doing.

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Hi Katie, update on my shoulder pain... G.P x-ray and it was clear, she very reluctantly gave me naproxen (anti inflammatory) because I said I would only use it when in severe pain. Im now going between co-codamol 30/500 and tramadol. Saw physio who diagnosed it as a frozen shoulder and gave me exercises to do, but most days it's too sore for this. She also gave me a tens machine which helps short term.

But on a better note my platelets are still within normal range thanks to HU.. hope you are well.

Best wishes lainy.

Merry Christmas 🎅🎄

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Glad to hear your platelets are good, that’s the most important thing. My husband developed a frozen shoulder after surgery & ended up having a procedure to get it fixed. Good Luck. Merry Christmas to you too. Katie

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I went to doc with shoulder pain and dizzy spells, she is more interested in finding cause of dizzy spells. I'm tachycardic with low no, she was going to email my heamatologist to see if she could push a referral to cardiology any faster than she could as a GP. Pain in my arm is not her priority, I need a healthy heart most importantly. Will update if any xrays scans ect xx

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Hi, new here. I have PV for 8 years. I just want to say I have the worst arm/shoulder/neck stinging prickly pain, In my 'gut' I truly think this is related. I told my doctor this week I just couldn't stand the pain/stinging in my arms and neck and head and so he switched me from Hydroxurea to Anagrelide to try to get my platelets down more to see if it makes a difference. I just started tonight so we'll see. He said if it doesn't help he will refer me to someone for my neck, but I really really think it's my platelets all sticky!

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That can't be it with me, my platelets are within normal ranges now. Doc soid I'm in remission, so why am I in agony every night with this arm 😭

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I too have suffered excruciating bone pain since starting taking this a week Wednesday. Knees, shoulders and elbows are worst but my right knee in particular is debilitating. Getting up through the night for the many toilet trips, I feel like an old woman and can't help yelling at the sudden pain. Does is subside, do you think? If not, I'm in danger of quitting

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I can honestly say mine has got much better but can still have a fee bad days every now and then... keep with it hun xx

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If you have rheumatoid factor then it would suggest that what you have is rheumatoid arthritis - much different to regular arthritis. There are many drug possibilities and this might help: arthritisresearchuk.org/art...

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I’m not in pain but cry when poorly.

I want mine life back too! Xx

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