Hello all
First of all hope you are all doing ok.
Has anyone with an MpN been prescribed Pregabalin for muscle spasms.
I have been suffering from a lot of back pain and now my muscles in my back and front are hurting a lot.
Could you let me know your experiences .
I have Et Jak2+ on hydroxycarbamide and aspirin.
Regards
Judy
Hi Judy, I have ET Jak2+ and have recently been prescribed pregabalin for anxiety. I haven’t noticed any side effects (yet) what dosage are you on?
Where I work pregabalin is generally used for pain relief. I Its a strong analgesia used for neuropathic pain.
Thank you for replying. I have been prescribed it for exactly that. Very concerned though about the side effects and warnings.
Thank you for replying. I have been prescribed it for muscle spasms.
I was prescribed Lyrica for osteoarthritis pain. it helped, but made it too hard to concentrate so I discontinued it. Later tried a turmeric-curcumin supplement that worked better anyway. Also no side effects.
All the best
Thank you for this. Do you have more details of the supplement.
Judy
I use the Spring Valley brand Turmeric-Curcumin 550mg with CurcuWin. CurcuWin is a bioavailable formulation that is recommended by my Integrative Medicine Specialist. I take 2 caps in the AM and 1 cap PM. It is available at Walmart and is much cheaper than the fancy brands that have exactly the same formulation.
Thank you for all your help.
I had dreadful, excruciating muscle pain with hydroxycarbamide. To the extent that every time I took my daily dose, it felt like I was poisonning myself. I also lost the use of my thumbs and my hands stopped working properly. I was basically becoming a cripple. I was only allowed to change to Pegasys on request when I stopped taking anything at all. I felt as though I waas going to die! that's the only way to describe it.
Thank you for replying. You certainly had a rough time. I have asked my specialist nurse to arrange an earlier appointment with the haematologist. I will ask some more questions. Judy
I wish you all the best. You will find out a lot more about the experiences of others in your position from this site. I do hope you have a better experience than I have. My body disagrees with any drug invasion but Pegasys is doing a good job for me at present. All the best
Hello Jacklina, for how long were you on Hydroxycarbamide? Also, along with the muscle pain, did you feel extreme weakness in your arm muscles? And did your hands shake and tremble? How has Pegasys helped with the platelets count and are you feeling better since the switch?
Hi. I was only on hydroxy for one month at the most. I suffered agonising pain in my hands, an inability to use my thumbs and I was losing the rest of the use of my hands when I refused to take any more. I was on my back, literally because I could not get up. After the consultant told me to continue taking them because he has 'thousands on them without problems' I did so for one more day. I then refused to take them anymore. Then I was made to wait 8 weeks before seeing him again. I was not enamoured with the treatment.Within a few weeks of going onto the Pegasys, my hands were perfect, working again as normal. There were so many other symptoms. I felt as though I was poisoning myself on a daily basis!
I have now had good bloods for about one year. I've just reduced my dosing time to every 3 weeks from every 2. No tests yet since I changed the interval so not sure moods will remain steady but fingers are well and truly crossed!
I was prescribed pregabalin for my epilepsy, some so called 'expert' thought because I had schwannomatosis it might help? I also have genetic osteoarthritis, it did not 'help' at all, I was on Lyrica and Lamictal at the time, drove me to a suicide attempt, with the pain and other joint effects !🤬🤬
Bone marrow result - cryptic
ET and Mild Executive dysfunction.
Inflamed Thigh and Glute Muscles
Changing dose of Pegasys 
Anyone for Vitamin D?
