Leg pain?

[Miriammusic]

Hello all. So grateful for this site. Even though I live far away from you all, I feel like a part of the community. I have been taking the Peg inteferon, 45 mcg, for 6 months now and am coping pretty well. Mostly tired. My platelets have dropped from 1.5 million to 560 at last visit. So that’s amazing. However lately I have had some pretty bad leg pain. Sometimes in both legs and sometimes only one leg, like this morning. It’s like a soreness or cramping. Just pain is the best way to describe it. Is this likely from the Peg? The jak 2 itself? Any thoughts?

[Cja1956]

Are you keeping hydrated? It’s so important when you take these meds. Also, try to stretch and walk a little each day.

I hope you feel better soon.

[Miriammusic in reply to Cja1956]

You know I really haven’t been drinking as much water as I should. You might be right. Thanks so much for the reminder!

[francesb]

My consultant told me we can get pain from the bones because the marrow is so proliferative and working overtime. Haven’t researched this though, just take paracetamol. Good luck.

[Miriammusic in reply to francesb]

Thanks for the info! I hadn’t heard that but it makes sense. Am taking Advil when it gets really bad.

[Helena303]

I also get pain in my right leg on outside. The pain shoots down my leg. I lose my balance as well. It aches when I walk.

I swear this it where my Et started. It started 4 years ago. I knew something wasn’t right.

Even though I wasn’t diagnosed until November 2018. I still am getting the same problem. I’m not allowed to take inflammatory drugs as the can make my stomach bleed. But Co drynamol does work well. I’ll ask my Consultant next visit if this pain is to do with my platelets. I’ve also notice my body aches more with Et. It also effects my arthritis and osteoarthritis make that worse as well. What with the fatigue as well. I feel really ok a few days then in all catches up on me. Then I think it’s because I’m older over 60 as well.

I tend to make out to my family I’m fine. They often say how well I look. Even my friends. But if they only knew. Ha ha!!! Can’t be explaining my illness as they don’t understand. They think I look young. Don’t realise my chronic disease. So I just go on acting fine as I don’t want pity. Or I’ll really think I was ill and probably start actually being ill. I don’t have a carer. So just get on with it.

[Miriammusic in reply to Helena303]

Thanks for your reply. Yes I always get “you look great!” also! Isn’t it strange?

[Cja1956 in reply to Helena303]

I can relate. I was diagnosed with fibromyalgia in my 30s, arthritis in my 40s, and ET when I was 52 (I’m 63 now). But the common thread was exhaustion and brain fog. I was a special ed teacher but I had to leave because I couldn’t be on my feet all day.

I attributed everything to my fibromyalgia. I look back now and wonder if the doctors missed something. I now sell insurance and work mostly from home and can make my own hours.

I also try to keep a brave face to my children. They knew I had a blood disorder but only in the last few months did I tell them that it was a type of blood cancer when it progressed to PV.

That’s all for now. Take care.

[hunter5582 in reply to Helena303]

Some of our pain is MPN related and some not. Have heard others, myself included, complain of leg cramps. I get mine mostly in the leg where I had surgery and it feels more muscular. Might not even be MPN related. I also have a host of inflammatory issues (osteoarthritis, eczema, GERD, insomnia, etc). Those kind of secondary issues can be related to JAK2 status. There is some fairly new research out on the role that the over-activation of the JAK2 signaling system increasing the production of inflammatory cytokines. JAK inhibitors are also used to treat psoriasis for this reason. The thing that worked for me is a Turmeric/Curcumin blend. I was able to completely d/c all NSAIDs and it worked better with no side effects. It does have some mild blood thinning effect, so you have to aware if you also take aspirin or another blood thinner. Can't say it would work for anyone else, but it sure helped me. I always go with a higher "bioavailability" formula since turmeric does not pass into the bloodstream easily. Hope you find something to work for you.

[Miriammusic in reply to hunter5582]

That sounds amazing. Is it a supplement that you purchase? Or something you “make” yourself? Referring to the turmeric.

[hunter5582 in reply to Miriammusic]

I buy the supplement at my local pharmacy. I have tried several different brands/formulations. Some are more bioavailable than others. I generally use the brand Spring Valley that notes 46x greater bioavailability. I take between 2-3 500-550/mg caps/day (depending on which formula it is). You do have to be careful about the hype from these supplement makers. They are poorly regulated, so what is advertised may not be so. Generally speaking, Turmeric (and blends) need help to cross the barrier into the bloodstream. Black pepper is commonly used. There are other approaches too. I try to find one brand/formulation that seems to work then stick with it. Be sure to let your doc know that you are taking it. It may potentiate the blood thinning effect of aspirin or other blood thinners. Almost all NSAIDS do this is well, so I do not see it as a problem per se. Some docs get uncomfortable with supplements since they are less familiar with their interactions than with synthetic drugs they know. I was on daily NSAIDS for osteoarthritis. Have not taken a single NSAID for 2 years since starting the Turmeric. If the issues you are having are inflammation-related, the Turmeric may help. Hope you have the same success with it that I had.

[azaelea]

I've recently started back on Hydroxycarbamide after a six month break for other medical reasons and I am suffering with painful places on my legs and arms when touching a certain spot. It's a searing pain , on lower leg and forearm. I'm wondering if it is ET symptom or caused by Hydroxy. Has anyone any answers? Do any of you good friends experience this? Regards, Fran xx

[hunter5582 in reply to azaelea]

HU can cause leg ulcers. I believe it is related to damage to the endothelium lining the blood vessels. This is a known side effect of HU and considered a sign of toxicity. Can also affect the intestinal endothelium. This is NOT something to ignore. While rare, it can cause gangrene in the toes and digits. HU is a toxic substance that can have serious side effects. The doc often has to keep you on the edge of toxicity for it to reach max benefit as it is therapeutically weak. Having said all that, it really does help some people with their symptoms; however, not everyone can tolerate it. Be sure to let your doc know you are having issues and do not let the doc ignore you. Some docs have moved away from HU in favor of other medications. it is critical that you find the med that is right for you. Each of us has a unique profile and we all respond differently to these meds. All the best to you.

[azaelea in reply to hunter5582]

Hi, thank you for your reply. My Haemo made me aware of possible leg ulcers, but these painful areas feel more like nerve ending pain and there is nothing to see on the skin. I'll keep monitoring things and contact Haematology if it becomes worse. No appointment due there till end of June, which to my mind is a long time. My GP has offered to keep an eye on bloods, so have 3 tests booked.

Regards,Fran

[Bluetop]

Hi, I'm on hydroxy and do get leg pain from time to time, but I agree with Cja, I think loads of water helps me. Glad the bloods are reducing though.

[redumbrella]

I am PV JAK2 negative I diagnosed 13 years ago, have suffered from chronic leg pain for the last 6 years or so mainly in the thighs and shins. I was diagnosed with PMR ie Poly Myalgia Rhumatica and was told that it would burn itself out within two years which has not happened but rather has gotten worse. It is only since joining this forum I have realised that bone pain is part of PV. On mentioning this to my Haemo her opinion was could so but that it would be unusual ! from reading the experiences of others here on MPN Voice I find that hard to believe. As to the Peg being the reason for your leg pain I am on Asprin and venesection for the PV and no other MPN related drug. I have also read on this forum that some people begin to suffer leg pain pain on starting Hydroxy. I guess we are all different in the way these MPN'S affect us, for me it is chronic leg pain and fatigue with some Brain fog. But as they say onwards and upwards literally for me as I am flying to Vancouver next month to visit my Daughter, am a bit concerned about the flight and the effect on my legs but I guess it will be worth it. Sorry for the long epistle.

Keep well or as well as as of us MPN'rs can 😀

Garry

[Miriammusic in reply to redumbrella]

Yes, from all the posts it does appear that bone pain ( joint pain?) is a part of many of our lives. Maybe the inteferon, maybe the PV itself. Enjoy your trip! Wear the compression stockings!! They help a great deal on the long flights.

[redumbrella]

Will do and will defo wear the stoking

Garry