Agrylin and joint pains - 2003 Thrombocythemia message archive - Current Topics, Archives, and Chatroom - MEJ Thrombocythaemia - Internet forum dedicated to Thrombocythemia - Message Board - Yuku

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Agrylin and joint pains

Author	Comment
Janet	Agrylin and joint pains	Lead	[-]
Posts: 14 (Sun, 27-Jul-03 16:08) More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts	Tags : None Hi I live in Solihull, West Midlands, England. I was diagnosed with ET 20 years ago and have had radio active injections, interferon injections, hydrea and have now been on agrylin for 3 years. I have had all the usual hassly symptoms - headaches,palpitations,constant bone ache, acute fatigue and tummy upsets but still work full time, run a house and have brought up two children. I was taken off hydrea after developing severe ulceration of my toes. I am now 52 and have recently developed acute wrist pain and tingling/pins and needles in my hands and feet. They are now treating me with nurofen and I am currently awaiting nerve ending tests to ascertain whether or not I have carpal tunnel syndrome/arthritis or.... whatever. I feel that the long term treatment I have had may be causing these. Any one else experienced this?
Shelba	Agrylin and pain	#1	[-]
Posts: 16 (Mon, 28-Jul-03 23:20) More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts	Hello Janet, I've tried 3 times to write and each time I get knocked off line before I get my questions and commets finished so I'm going to cut to the chase. Since you are an old pro at this ET I have only a fewyears of treatment for it. Do you know if your count is up or down by the way you feel? Does it seem to effect your mind and or memory? Can you tell since you have been on other med. how much is ET and how much is the med that makes you tired, swollen, and any other type of info you can share. Many thanks. I will be 67 in Oct. but still work at a job and can and often put in 10 hour days, I know that tired but am at other times when not working.?? Any insight you care to share will be gladly recieved. Shelba in Muscle Shoals, Alabama USA
Janet	agrylin and pain	#2	[-]
Posts: 14 (Mon, 18-Aug-03 21:38) More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts	Hi You sound as though you are doing very well with this silly illness and the treatment. I can always tell when my levels are going up as I find getting up the stairs from the railway station like climbing Everest! That is my barometer! I see the specialist every 3 months and go to my GP in between for blood tests if I fell unwell - the GP and I just adjust the doasage either up or down. It would seem that I now have rheumatoid arthritis and I am on steroids for the inflammation so am getting a bit confused as to which tablet is making me feel lousy - the thyroxine, agrylin, painkillers or steroids! My concern is did the treatment cause the arthritis or have I always had it hidden by the high platelet level, When I was ill 20 years ago it was with similar symptoms to now - the docs do not know. Would be interested in anyone else who has experienced the same
Unregistered(d)	Joint pains	#3	[-]
Posts: 0 (Tue, 21-Oct-03 15:08) More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts	First time on this site. Diagnosed with ET 1o years ago. Levels 2000+. Treated first with Hydroxyurea then Agrylin now back on Hydroxyurea + asprin. I have had bad joint pains back and shoulders for last 5 years or so but consultant diagnosed sarcoidosis. Made no connection with ET although he knew I had it! A course of steroids certainly helped but off them now. Do you think your side effects are from the condition or the medication?
Unregistered(d)	ET -Steroid & analgrelide	#4	[-]
Posts: 0 (Sun, 2-Nov-03 02:18) More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts	Hi, I too am taking prednisone(steroid) and analgrelide. The steroid is to treat the inflammation in my arteries. But the agnalrelide has beocome less effective for me since I started the prednisone. I also experience tinkling & numbness of hands & feet , and all sorts of aches and pains which the doctors can not explain. Do you find that the steroid cause the platelet counts to go up? I suspect the analgrelide may cause inflamation in the body as well. Or may be the analgrelide and prednisone are incompatible?? Anyone has any comment on this?
Janet	Re: ET -Steroid & analgrelide	#5	[-]
Posts: 14 (Thu, 29-Jan-04 00:28) More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts	Hi Now been diagnosed with rheumatoid arthritis. On steroids and anti inflammatories as well as thyroxine and anagrelide. Feel lousy- suffering bad headaches and neck pains, particularly at night, dizziness as well as the horrid joint pains. For the last 4 years have had anagrelide under direction of private consultant but on a prescription from the GP. This time the pharmacy could not dispense the anagrlide as the distributors have restricted its distribution as a result of the trials from St Thomas's Hospital. I can only now receive the drug if I go as a NHS patient - barmy or what! The other alternative is to go back onto Hydrea which caused bad ulceration of my toes. Anyone heard the results of these trials? What exactly are we taking here with this drug???

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