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MPN Voice
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Leg and/or bone pain

Hi I posted before about this when I had PV, now have MF and got the problem back again. Several posts about this but it's got so bad thought I'd see if anyone out there had a better solution. Am on Ruxo which was fabulous initially. However I now have more or less permanent pain in my legs, especially round my knees. Hard to tell if muscular or bone but also get some pain in sternum and shoulders/arms so guess it's bone. My haem - whom I have a lot of respect for - says not due to MPN but I am unconvinced. I currently taking paracetamol and neurofen which helps for 2/3 hours.

Anyone got more info or, more to the point, a better pain killer?

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Hi, I have ET jak 2 positive diagnosed in June . I am on hydoxycarbonide daily. I have suffered with pains in my legs constantly for the last few months .i was told by my consultant that it could be due to the et and like you to take paracetamol. I also would like to know if others suffer this because some days I can’t walk. Xx

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You are not alone. I was diagnosed E.T in March and put on H.U in May. Currently talking 16 tabs a week. I have horrendous pain in my shoulder, mostly souring the night. X-ray was clear. One of my G.P said rotator cuff damage and another said A.C. damage. I'm now forced to take co-codamol 30/500. My gp said I should not take ibuprofen or any other anti-inflammatory due to E.T.

I have my heamatologist tomorrow, will be asking her about this pain and any connection to HU ? I also have bone pain in my leg. This is manageable tho.

I do hope you get some relief from your pain as I can totally sympathies.

Best wishes lainy xx

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thanks - if poss could u check that we're not meant to take anti-inflammatories???

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Hi Jane,

You shouldn't take nsaids ( Ibuprofen) as well as aspirin it can cause stomach ulcers. I must admit that I do very occasionally but would not do on a regular basis.

Judy x

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Thanks

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Sorry to hear your suffering Jane. If it continues why not ask your haematologist what is a suitable pain killer for your condition.

I know we’re told not to- but I have taken ibuprofen on the very very rare occasion too. I will try and work it so there is a gap of eight hours or more between taking aspirin and ibuprofen. However, I’m in no way endorsing this!

I have found it is the only drug that truly helps me when my joint aches/pain become too much. I must stress this is not often though.

Mary x

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Hi, this may interest you pvreporter.com/bone-joint-p...

According to this the bone pain is due to the mpn. It seems not all doctors understand all the problems. I take paracetamol which gives some relief. Best wishes, Frances

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I’ve read this before but am wondering if that’s still believed. So much has changed in the decade(s) since it was written so I wonder if there’s any contemporary medical or scientific study that says this. Does anyone know?

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There seem to be several sites on the web that mention bone pain in connection to MPN, 2 causes which may or may not be linked

- inflammation of the bone lining = periostitis linked to fibrosis

- very active bone marrow giving pressure inside the bone linked to PV ET etc but not to MF

but I have not found any very authoritative sites or research papers talking about this

My current haem accepts the second type of pain, but can't see why I should currently have problems as my bone marrow has largely disappeared!!

So i am just concentrating on pain relief, which is tricky as no-one wants to give me a prescription for something they don't understand!

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I get pain in my hands, fingers and feet but not sure what it is. I’m ET, jak+ and on HU. Not sure if this would be a viable alternative for your pain but my husband takes neurontin, also known as gabapentin. Both of which affect pain in your nerves.

Katie

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I too suffer similar pain since starting on Hyrdoxy. I have wondered whether those of us just on venesection and not taking other medication have similar pain? Before taking the drug I had no symptoms to speak of.

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It's interesting to see that a haematologist cannot relate bone marrow scarring to bone pain! Actually it's quite scary. Yes, bone pain in MF is well documented and I have it too. I am waiting for another BMB to assess exactly what it going on and increasing my pain. I might be experiencing a reducing effectiveness of Ruxolitinib as I have been on it for several years and recently had to reduce the dose because of low blood counts. As I also have spleen and often liver pain I have started using buprenorphine patches but even with these I have to add paracetamol when pain gets bad

? Second opinion to help you get this sorted if your doctor doesn't think it is MPN related

Best wishes, Jan

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Good luck and thanks

Ruxo is so new that presumably longer term effects not well documented: I still remember how fabulous I felt for the first few months on it - new lease of life for 6-8 months. Sad it didn't last!

Unfortunately I am already on my second haem: the first one didn't like me because I challenged his view that bone pain was nothing to do with MPN.....so can't afford to risk upsetting another!!

Think I will focus on getting better pain killer: will ask haem what I can/cannot take then see if I can get GP to prescribe

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Hi Jane... :)

Very interesting question, & many seem to concur that the MPN is the likely cause of the increased pain. In any event, here is my conjecture...

Initially, I was also diagnosed w/ ET - JAK2 neg but CAL-R+ (type2). However, my BMB showed a grade 2 level of bone marrow scarring, hence my reclassification to MF.

I can honestly recall having had pain in both my joints & bones over a longer, much larger period of my life, (all prior to my actual diagnosis). It was through that recognition & speculation that I now realise that I have lived w/ my MPN for much, much longer than I previously might have suspected, & simply learned to live through the acknowledgement & symptom burden, as just part of me, who I am and my own bodily complaints etc. I was also always reasonably active in some type of sport or another, & I continued playing an opening bat/keeper role well into my fifties.

Recently, I posted a small message about my ephemeral journey around Cambodia & Thailand, where I suffered a minor motor bike accident damaging both my right leg and shoulder. The X-rays' revealed an interesting fact, & my doctor later informed me that my shoulder was heavily inflamed w/ arthritis. There is also a clear protrusion, where it was defined as a slight separation of the rotor cup. The pain is quite real & radiates throughout my entire arm. However, my left arm also almost always aches in much the same fashion, only w/ a slightly greater range of movement available...

Not sure I would be attributing any of this to the HU or Interferon for that matter... I could not tolerate either drug when I was using them.

My spleen does go up & down in size & is ultimately always impinging on my stomach causing that feeling of early satiety.

Most of that changed at first once I started the Jakafi (Ruxolitinib). I commenced on 20mg bd, w/ Valaciclovir 500mg bd (prophylactic) , low-dose aspirin 100mg per day, & Coversyl for my high BP at that time (which I now no longer take).

At first, I seemed to receive a boost in my energy levels, & I made use of that to endeavour to improve my fitness & overall physical condition, (which generally I have managed to achieve - see BP comments above).

However, my pain levels do go up & down on a regular basis. I occasionally suffer from spasmodic internal bleeding that I believe might stem from the 'portal vein' & largely be due because of my spleen enlargement over time, (Jakafi usage is now approaching the end of the first year for me). From 20mg bd, to 25mg bd, & now back down to 20mg bd.

I am hoping to continue in its reduction, however, & having said that, I am also aware that reductions in Jakafi will most likely have some increased bone pain, & some spleen enlargement (Ruxolitinib withdrawal syndrome).

I do try to manage all the data concerning all of my medical tests and results from my blood tests, & log them into a table for easy scanning. I also keep another table relating to my fitness regime, & try to add honest commentary about how I might feel after each session. Using a scientific weights scale, I log the data. & in-so-doing I try to maintain a picture of my overall health condition, & deterioration etc...

This is my second year since diagnosis come May 2018. The comments made by others, from time to time, are most relevant, where the competence of GPs and some members of the medical fraternity are concerned, in my view... It is even worse in Australia where w/ such a small population, we have even less MPN specialists. I would love to have access to Dr Harrison...

Managing the Pain:

The aches are always becoming worse for me unfortunately. Like you Jane, & others here, I will take Paracetamol, Panadeine Forte, & Trammadol on occasion. I also take an anti-inflamatory like a Neurofen or Naproxen 250mg as needed (w/ food). As I only eat in the evenings though, the taking of Naproxen or an anti-inflamatory can be problematic, causing a tummy ache at times, if you understand my meaning etc...

Lately, my Hg has begun dropping somewhat spectacularly, & as a result my fatigue levels are yet more extreme than previous. I am often returning to bed & staying there all day... When I feel I have to... I just do it! However, I am always fighting it, but on occasion I am so mentally tired thinking clearly is nigh impossible, & I am finding all of that most disturbing...

In any event, I hope that something I might have contributed here will help you a little...

Best wishes Jane xo

Steve

(Sydney)

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Hi, I have PV jak2 pos. I too suffered incredible bone and joint pain and took paracetamol and sometimes codiene. I recently discovered through researching that organic apple cider vinegar (Braggs from Holland and Barrett) can help with this. Arthritis sufferers discovered this too. I ran this through my haematologist before starting this and he said try it. I did a 2 week stint on 1 tablespoon in a large glass of water a day and it worked. I then stopped for the following 2 weeks to compare the difference and the bone pain came back. I now take this every morning and the difference it has made to my bones, muscle and joint pain is unbelievable. I've not used my pain killers whilst taking it. I thought if might be a fluke, but it definitely worked for me. I would speak to you haematologist before you do this though, it may be worth a try, :-)

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Hi Jane Dad who has MF suffers with a lot of neck/ shoulder pain however also joint pain which is linked to his arthritis however the neck shoulder pain has been since diagnosis of MF. Again he has asked the same as you and been told not linked to the MF.

Interesting read from beetles post as beetle on buprenorphine patches as i am of nursing background were you referred to a pain clinic/ is there such a thing for example symptom control clinic or was this something prescribed by the haematologist?? I would be interested to know what is available for patients with an mpn in your areas as many of you do experience symtoms of pain on a daily/ regular basis it would be interesting to know how this is managed for patients with MPN'S and how effective some of the pain management is . Is there any recent research on this available?

Beckyxx

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