Terrible pains in my arms!

[Fairbank]

Hi all

Diagnosed 2021 with ET Jak2+ 8% platelets 650

I have been taking peginterferon for about 18 months 45mcg per week with occasional breaks due to side effects. For the past few months my arms and legs suddenly start to ache badly, usually in bed but now during the day also. It is quite bad at the moment and I have to take a paracetamol to alleviate the pain so I can carry on with my day/night comfortably. My liver blood test recently was slightly raised and my platelets are usually betweenn 350 and 420.

I’m a fit 73 year old, exercise and eat well so I was just wondering if any of you on this forum suffer the same?

I see my local haematologist and a six monthly call with Guys Hospital but they say just to carry on!!

Wishing you all well!

[hunter5582]

Sorry to hear about the limb pain. This kind of pain is a warning that something is going on in your body. There is no way for any of us to be sure what that is. There are several possibilities that come to mind. It is known that Pegasy can have adverse effects like arthralgia and myalgia. You would be the best judge of whether your pain is consistent with those adverse effects. Another possibility would be a nutritional deficiency, magnesium or iron. Magnesium deficiency (Nexium induced) caused significant leg pain/cramps, particularly at night. Magnesium supplements solved the problem for me.

It would be relatively simple to get a nutritional evaluation done. It is certainly worth ruling out something that is so easily addressed. If it turns out that you are not deficient in key nutrients, then you will have ruled our one potential cause of the limb pain. I would note that when tested, I was deficient in Vit B/folate, Vit D, and magnesium. A more comprehensive nutritional evaluation can be very helpful.

Wishing you all the best

[Fairbank in reply to hunter5582]

Thank you Hunter I will get tested asap! Wishing you well also.

[MPort in reply to Fairbank]

Hi if you are in the UK and you get a nutritional test can you let us know who did it please. I hope you find a way to ease the pain

[Fairbank in reply to MPort]

Thank you, I’ll let you know!

[Annula in reply to Fairbank]

Good luck Fairbank & thanks to Hunter for sound advice as usual.I was thinking that it may be some sort of myalgia pain too.

[Carol0925 in reply to Fairbank]

Good luck and please let us know how your nutritional evaluation goes. I’m in UK too. Myalgia is a problem for me too. I’m on 45 Interferon weekly (12 weeks) and have noticed an increase in muscle pain, particularly in my legs. I will be discussing with my Team next week.

[Fairbank]

Sorry to hear about your aches. Hope you get some feedback from your team next week.

[DiveGoddess]

Fairbank, Sorry to hear of your pain. I hope you find some relief soon. I have not experienced what you described, but read through thread, and hoping this helps 😊 Christy

[Janis12]

Hi, I went onto Pegasys five months ago and my already existing aches and pains have now reached a new level. I am 65 years old and like yourself I am fit, active and eat a good diet. My review is next month and I am now debating what to do, my mission was to come off hydroxycarbamide but my concern is the possible damage the pegasys is doing to my muscles and joints. Generally I tolerate pain quite well but I am now finding myself looking for excuses not to do the exercises I love and have enjoyed for many years. I will be interested to hear how you get on. Best wishes.

[Fairbank in reply to Janis12]

I’ll let you know! Take care

[Dusty777]

OMG, I thought it was just me. I started on Pegasys two months ago. First I had headaches, which I don't typically get. Those subsided and then the pains in my legs and arms started. I thought maybe I was exercising to hard (although I hadn't really changed anything). I stopped the exercises and still the aches remain. I don't like taking ibuprofen, but find myself reaching for it, usually before bed so I can sleep comfortably. I am being tested monthly and my values seem normal (liver enzymes a little high). My minerals and vitamins also seem within range. The only explanation I can find for these muscle aches is the Pegasys. I find some bitter-sweet consolation knowing I'm not alone (or going nuts), but I'm an active 65 (well, before Pegasys) and wonder if this will be my new normal - ugh.

[Fairbank in reply to Dusty777]

Hi Dusty. Sorry to hear your troubles with aches and pains. Since posting my aches have subsided and seem quite tolerable at the moment. I haven’t had to take as much paracetamol as usually. I’ve changed my dosage to every two weeks 45mcg and feel so much better. I will have to inform my consultant at my next appointment soon. Hopefully you will get used to it in time. All the best from Mags

[Dusty777]

Thanks Fairbank. My pains come and go. I am on 90mcg every two weeks. I am hoping, if test results improve, I can also go to 45mcg every two weeks. As the saying goes, one day at a time. Hope all goes well for you, regards Dusty

[Cja1956]

Have you had a bone marrow biopsy? Are you seeing an mpn specialist? Bone pain could be a symptom of MF. Your hematologist can check to see if you’re starting to progress.

[Fairbank in reply to Cja1956]

No haven’t had one and has not been mentioned by my local haematologist. I have a telephone appointment soon with Guys Hospital so will mention it!