Does anybody have side effects?? - 2003 Thrombocythemia message archive - Current Topics, Archives, and Chatroom - MEJ Thrombocythaemia - Internet forum dedicated to Thrombocythemia - Message Board - Yuku

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Does anybody have side effects??

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Unregistered(d)	Does anybody have side effects??	Lead	[-]
Posts: 0 (Sat, 22-Nov-03 12:15) More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts	Tags : None Hi everyone... My name is Tania and I am 29 an from NZ. I was first diagnosed about 3 years ago and since then all that is done for me is I have 6 monthly blood tests. I was just wondering does anybody have any ill side effects from this disease. My Specialist tells me nothing, and that everything was ok, and that all I needed to do was take a Heartcare pill every day, which those of you not from NZ is really like 1/2 a disprin/asprin. My count hovers around 700-800 and is slowly getting higher, but he said that we have to wait until its above 1000 before doing the Bone Marrow test. If any body has anything at all that they can tell me that would be great. Tarns
markejon	Re: Does anybody have side effects??	#1	[-]
Posts: 861 (Sun, 23-Nov-03 05:07) Administrator More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts	Hi Tarns, I was diagnosed with PT almost 7 years ago, after a routine medical. I had no apparent symptoms then, and still don't, despite a high count (although I did go through a period of regular headaches, but most likely not attributable to the PT). Have you seen the Thrombcythaemia section of my website - www.mej.org.uk There is a chart showing my rising and falling Platelet count. I have been doing a lot of surfing recently, and saw a site that described Thrombocythaemia as a "non symptomatic" condition - Can't remember the address though. However, there are quite a few people who do report symptoms, as you'll see in some of the posts on this forum (don't forget to check out the 2002 archive). It would seem that everyone with this condition has a different threshhold before problems start occurring. I take it you are fit and well? Are you smoker, or just 'smokin' Mark J.
markejon	Re: Does anybody have side effects??	#2	[-]
Posts: 861 (Sun, 23-Nov-03 06:51) Administrator More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts	Found a couple of websites with info and references to symptoms. www.telemedicine.arizona....ative.html Section C for ET + 'Thrombocytosis' link for PT. www.thailabonline.com/sec...ytosis.htm (scroll down to the english text) Mark J.
Unregistered(d)	Life expectancy	#3	[-]
Posts: 0 (Sun, 23-Nov-03 14:06) More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts	Hi, Its encouraging to read one of the website which stays that the life expectancy of ET patients is the same as the unaffected patients. I remember I read from some documents that ET patients' expectancy is only about 10 years.
greg j	Re: Does anybody have side effects??	#4	[-]
Posts: 34 (Sun, 23-Nov-03 18:57) More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts	As far as I am aware there are no side effects to PT but there are side effects to the medication. Untreated with our platelets running wild. i.e over a million we are in a very high risk to suffer a thrombotic event, stroke or heart attack. In a way PT is insidious because its a condition we dont know we have. Tarns you are clearly in a low risk category due to your age and that you perhaps dont have any other medical problems but one thing I have gathered is that PT is progressive if untreated. I was told by my specialist that PT is the least dangerous of all the blood conditions and that if we had to have one then this should be the disorder of choice.
Shelba	Side effects?	#5	[-]
Posts: 16 (Sat, 27-Dec-03 21:38) More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts	I had none that I know of. I was told several years ago in a rare check up that my PTL count was high. Had no idea what it was. They did a bone Marrow test, showed nothing and was told '600K maybe your normal'. 'Come back in 3 months'. I did not hear the come back part. 3 years later I needed to have my hip replaced [only problem as far as I knew] going through pre-op exams my PLt count was found to be over a milion. I had none of the health problems I'm suffering from today then. My surgery was put on hold I was started on this nightmare trip of Medicine 1 st and worst was Hydrea I nearly died. I was very active healthy person who worked 12-13 hours a day and then could still have enough left over to play. after 3 weeks of starting and stopping taking that posion I was so sick my count so low my ptl count was 26 as every thing else they count in blood was deadly low. I refused to take any more. After they built me back to some normal liveable state I was started on Agrlyin. It didn't seem to harm me except to pay for it. It was about $10. a pill I took 3 a day at first then increased. Now my blood pressure is yo-yoing, I was swollen like a toad frog for nearly a year now till after all the heart tests show its not my heart causeng the problems. I just went to a kidney doctor and he took me off the gal of water I have always drank and thought was good for me. Swelling is nearly gone and I'm 2 sizes smaller [goodie] Waiting for report on all the tests now. But from a healthy pre-medicene taker to a very low energy can't work more then 15 minutes w/o a break no fun gal who is taking a day 5 gr. Agrylin, 3 different Blood Pressure pills and Priosec person who is not a HAPPY CAMPER. The whole thing started with the need for a hip replacement and I still need the new hip. After I get the new hip I'm really wondering if I can go off the pills and take my chances with the high Ptl time bomb? Hope this makes sense I've sat here so long that bad hip doesn't want to move so I'm sending as is. Thanks for letting me pour out my story.
greg j	Re: Side effects?	#6	[-]
Posts: 34 (Tue, 30-Dec-03 01:58) More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts	Hi Shelba its great to hear from you. I check this forum frequently but I had started to become apathetic regarding posts. I would like to see more chat here as I think self help groups are great. In fact I told my haemotologist about it she said it sounds wonderful she said she will look in. Sorry to hear you have to pay $10 per pill. Dont you have medicare or medicaid or some such thing. Does it cover or do you really have to pay. Guess we are lucky over here in the UK with our much criticised national health service. I dont pay anything at all for anagrelide. All other prescriptions cost us 6.10. about $10 US. I pay 30 for 4 month's prepaid which means I can have all the prescriptions I want during that period. for no extra charge. It sure pays off for me. Even the junior Asprin I take which would normally cost less than 2.00 per bottle I have my GP do me a prescription so I get it for nothing. Btw I know alabama pretty well. I worked for Acog during the Atlanta Olympics. I often went to alabama, including one crazy day I went to a party in Birmingham and then drove back through the night to Atlanta so I could be in work the next day. I wish I had that sort of stamina now.

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