Hydroxycarbamide and muscle pain

[Digger031145]

Ever since I was put on hydroxycarbamide in Feb 2015 I keep getting mid to upper back muscle pain episodes.

These seem to happen every time I get a cold. I get quite a few colds during the year so I get quite a few episodes of excruciating muscle pain.

It’s just on my mid to upper back on my left side only. My chiropractor says it’s inflammation and gives me ultrasound treatment

I have asked my haemo about these muscle pains but he said not connected to hydroxycarbamide.

I can’t stand these pains any longer but I wonder if having daily dose of hydroxycarbamide is lowering my wbc to the point it can’t fight very well

I found this on the Internet and it seems to say what I am thinking

If it is the hydroxycarbamide I’ll stop it.

I was put on it when my platelets were 515 and no symptoms or events.

I am now 66

Quote: · The treatment also reduces white blood cell levels that can encourage inflammation. Treatment with hydroxycarbamide

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That was such a shame you were put on Hu when you platelets were only 515. That is not much above normal which you probably new. I am one year older than you and still just on aspirin and I have never had symptoms. Age is not a good enough reason to go on Hu if you have no symptoms. And platelets are not too high as yours weren't. Makes me cross when patients get put straight on it. Hope you can sort this out. X

[Wyebird]

Are you under an MPN specialist? I think muscle pain is associated with MPNs.

[Digger031145 in reply to Wyebird]

I only got the muscle pain a few weeks after I started HU.

It’s just the one muscle at the mid to upper back on left side.

I have no other symptoms and had no symptoms before hand.

[Cja1956 in reply to Digger031145]

Are you sure it’s muscle pain? I had terrible back pain a few months ago and on the third night I could barely move. I went to the ER and it turned out I had a bladder infection which had spread to my kidneys. I hope you get to the bottom of this. Feel better.

[Digger031145 in reply to Cja1956]

Yes it’s definitely muscle pain. I’ve had it for 4 1/2?years on and off. Every few weeks.

[Jlah in reply to Digger031145]

My mum, nan and I all had back pain - runs across the whole mid back - specialist said not ET related yet we’re all on hydroxy for ET.

[Digger031145 in reply to Jlah]

What sort of specialist have you seen about it?

Mine is just the one side at the back.

It flares up and I’m in agony for about a week then it goes away for s couple of weeks then back again.

My chiropractor says it’s inflammation in the muscle but I don’t know what sort of specialist deals with muscle pain/inflammation

[Jlah in reply to Digger031145]

Hi. It was my Haematologist. It’s like a low ache and I get it when tired.

[ChelseaF]

I get pain in the exact same area and I am almost positive it’s my spleen.

[Digger031145 in reply to ChelseaF]

My spleen is ok and it wouldn’t give muscle pain on the left side of my back

[Digger031145]

My haemo said not ET and not a side effect of HU. Strange it started up a few weeks after starting HU.

[Cja1956 in reply to Digger031145]

My hematologist I had for 11 years told me he didn’t understand why i was so fatigued when he knew I was anemic and my platelets were in the 700’s. So I changed my doctor a little over a month ago and after all new tests, she said I had progressed and will probably need a bmt in the next 2-5 years. So I would suggest a 2nd opinion.

[Digger031145 in reply to Cja1956]

I have had a second opinion from professor Claire Harrison and she is an mpn expert

[Cja1956 in reply to Digger031145]

Well, I hope you solve your problem soon.

[hunter5582]

Never heard of HU causing this, but must say I am a bit surprised that you are on it with platelet levels so low. In the absence of symptoms like thrombosis, not sure whether the risk-benefit ratio makes sense. HU is a toxic drug with significant potential adverse effects. Right for some, but not for all. Can't say what is right for you, but perhaps a second opinion form a MPN Specialist would help.

Suspect your chiropractor is on the right track. If you are JAK2 positive, then you likely carry on overload of inflammatory cytokines. These cytokines are thought to be responsible for many of the secondary symptoms those of us with the mutation experience.

I have been using a Turmeric-Curcumin blend for the last three years to manage osteoarthritis. It works better than any NSAID I ever took with no bothersome side effects. I also have chronic back pain due to spinal deterioration and likely chronic inflammation. I see a massage therapist for the back pain - which keeps it manageable and I do not need to take any more meds for the back issues. It is important to find a therapist who is skilled in medical - therapeutic massage.

Hope you get some answers soon,

[yarrowleaf]

In my opinion it is linked , more to the medical process than to a certain product. You get infections and pains because your body tells you that there is not sufficient blood for it to work properly.

It's almost the same that happens when you eat a huge meal and then go out running a marathon directly afterwards ;)-- and the same reasons for the old rule about never to go swimming until half an hour after a meal.

The different is : medication signing lack of blood afflux is a reaction to a wrongly composed blood, while meal induced lack of blood afflux is true lack of blood afflux.

Sometimes you body have such or other "violent" reactions because your brain send mock signals -- like when you suddenly get gooseboops all over for no known reason--lol

Our medicins, all of them, create a sort of disorder in our blood-- permanently or periodic. And our bodies react .

My advice about your upper back and neck. As soon as you feel it coming-- dress warmly, A shawl is good (if you aren't too prissy ) -- you can also apply "heat creme (which is to be bought in every horse tack shop), but it does not work as well as the shawl because there is, in fact, not always sufficient blood to boost the veins and capillaries.