MPN ET, Hydroxycarbamide & wrist pain

[HoundSept2022]

I'm not imagining this. My wrists hurt like hell. I can still do normal things okay, but I'm afraid of twisting motions. The discomfort disrupts sleep every night, though, apart from one night, it does not completely prevent me from sleeping. I have MPN ET. I'm on 12 x 500 mg hydroxycarbamide per week. My wrists became painful soon after the last increase from 10 to 12 tablets per week. I mentioned this to my consultant last week, but he couldn't enlighten me as to the likely cause. It could be the underlying ET. It could be a side-effect of the chemo. It could be old age. (Thanks!) I sort-of hoped that it's just a reaction to the increased dose and that my body will adjust soon.

Tonight I attended a meeting of some friends, some acquaintances and some strangers. Someone saw me rubbing my wrists and enquired if I had Carpal Tunnel Syndrome. I said no, definitely not - it could be a blood problem, a side-effect of medication or just old age. Obviously I came home and looked up the symptoms for Carpal Tunnel Syndrome. There's an uncomfortable match. (Literally uncomfortable.)

I know that MPN patients get joint and bone pain. I know that Hydrea can cause these, too. Do people get wrist problems that have similar symptoms to Carpal Tunnel Syndrome? Are MPNs known to lead to Carpal Tunnel Syndrome? I'm just curious. I know there's a lot of experience and knowledge out there and I won't mind if you tell me to man up and just get on with life.

Thanks, folks.

[Rem31]

Funny you should say that.. last year I was advised by haematologist to ask my GP for a referral to a neurologist due to symptoms of peripheral neuropathy in my hands. It’s a possible side effect of hydroxycarbamide.

Turns out I have carpal tunnel syndrome and it’s unrelated. It can be quite debilitating for some but thankfully not too bad in my case so I declined the procedure to ease the nerve. I was given wrist splints to use at night which is when the discomfort is usually at its worst and that helps a lot.

[HoundSept2022 in reply to Rem31]

Thank you. Helpful to know. Coincidences happen. I'll bear that in mind while I wait to see whether the wrists get worse.

[Ratton]

I have E T jak 2 and do have wrist pain occasionally. I also have osteoarthritis which may be a contributory factor to yourCondition also.

Did u think of that 🤔

Hope u can be helped.

[hunter5582]

You have accurately summed up the conundrum of sorting out what is what when you have a MPN and are treating it with medications that have common adverse effects. Sometimes timing is the only clue. In addition, we also develop unrelated issues that need to be addressed.

Hydroxycarbamide can cause arthralgia and other issues in joints. The MPN can cause systemic inflammation, contributing to a variety of issues. You may have also developed Carpal Tunnel, arthritis, tendonitis or something else. The only way to figure out what is going on is to go through a the complete assessment process.

One thing that will help is to look at your CMP to assess renal function. Given the recent increased dose of HU, this should already have have been done. Referral to an orthopedist and/or rheumatologist will also likely be needed. Your GP should be able to get a start on the basic diagnostics to determine what specialist is most likely to be needed.

Hope you get this sorted out soon.

[HoundSept2022 in reply to hunter5582]

As always, thanks, Hunter. They always say my kidneys are okay after blood tests, but I'll follow up with my GP if things don't improve soon.

[Pachena]

I have ET and on aspirin tho I’ve had carpal tunnel off and on for about 6 months. An ultrasound showed it up clearly. I wore a brace for awhile to help isolate and lessen the inflammation there. It gradually got better but it does flare up from time to time. A Physio will advise you on ways to care for your wrists so you don’t strain them. When I do yoga, I put a folded towel under my hands and wrists to give the nerves some space and relief rather than flat on the mat.

[Mills55]

I’m only recently diagnosed with ET but had carpal tunnel on both hands 10 years ago. It mostly manifested itself with pins & needles which prevented me from sleeping properly.

It’s definitely worth getting yourself checked out to see if you have carpal tunnel because if they choose to operate (I’d recommend this rather than the injections ) the relief is instant.

Since the operation I haven’t had any symptoms at all the only annoying downside of the operation is the amount of time the incision takes to heal .

The tests for Carpal tunnel aren’t painful just some pricking of the finger tips and some tiny electrical charges.

Hope this helps

[HoundSept2022 in reply to Mills55]

Thanks. Good to know both that the operation does the trick and that the test is quite simple. Less scary than I thought!

[Janis12]

Hi, your symptoms are interesting. I suffer from wrist pain but recently my platelets increased so |I was recommended to take one extra hydroxy per week and within a short period of time my wrist pain increased dramatically. Is this coincidence , I really don't know but it sure is affecting my cycling and other activities. I thought it unlikely that it would be carpel tunnel in both wrists at the same time. I have not investigated any further but was thinking of buying some wrist splints which I could wear when exercising...watch this space! Hope you get to the bottom of your problem soon.

[HoundSept2022 in reply to Janis12]

Thank you.... that is interesting. I'm trying to keep my wrists warm to ease the pain. I've started to wear wrist warmers in bed, at work, for driving and when exercising. It may be helping. Only time will tell.