intense burning in arms and legs

hi everyone this heat is a nightmare lm at home with fans and regular cool flannels but the burning sensation in my arms is worrying me.

l take a daily dose of 500 mg hydroxy daily as well as warfrin. Is there anyone else suffering this.

lm 70 years old and been on hydroxy for 2 years.

Adiewon



[Phantasia]

Hi Adiewon2, Five months ago my feet and lower legs started to feel like they were burning. My haematologist took me off the hydroxyurea suspecting it triggered peripheral neuropathy.

I suggest contacting your specialist asap to discuss.

Did it come on suddenly or gradually? For me it was literally overnight.

I am still experiencing uncomfortable sensations so my GP prescribed Mirtazapine which helps with sleep and masking the sensations.

I hope it isn't PN and that it's just a transient symptom.

[Hidden in reply to Phantasia]

Hello Phantasia no this seems to be triggerd by the weather l think.What l mean is last summer the same thing happend the hotter the sun the more intense this burning in my legs and arms. Its so scary to not be able to stand the sun on my skin,so as l say stay indoors. No it might relate to my MPN and the hydroxy but it's my guess l had MPN undiagnosed for years without this horrible burning which l think is linked to Hydroxy and possibly Warfrin l have been on these for 3 years now. Although God forbid mentioning warfrin as a problem as everyone l have spoken to about it swear it's a miracle drug especially for over 65s and those with thrombosites issues.But thank you so much and as soon as lm able l will contact specialist Clare Harrison again who l spoke to earlier this year for a second opinion and who diagnosed me with PV not ET.

🙏Adiewon

[T1960]

Hi. I so have sympathy for you. I am on the same dose as hydroxy, also aspirin 75, and gabapentin for pain and the itching. It was first thought I could have neuropathy but I have had the nerve test and haven't got this. I'm not convinced that gabapentin is the best drug however for this. As Hunter stated it is probably masking something, hence why I am going to see a MPN specialist in Manchester. I am going to be more proactive as I too struggle with certain issues. I am currently putting my feet on ice block's, it has worked wonder's. I am very new to all of this, but asking those important questions on this forum is the best. I have learnt lot's about all MPN s, don't give up. Best wishes T

[Hidden in reply to T1960]

Thank you T l will try and get a neuropathy test but it's so tricky nowadays trying to acess my GP practise. Blocks of ice sounds good l will try that l was on gabapenten but could not tolerate the side affects. Paracetamol is my go to it helps me. Blessings ADIWON