I have ET and I've been to the hospital this morning and my platelets were down again to 385. The heam said I was heading for being normal - that's something I've always wanted to be and never succeeded at!!! I'm on 16 x 500mg HU per week, and an aspirin a day, I've been asked to continue at that dosage. So far, luckily, I have had few side effects, the excess acid has lessened now, my hairs a bit thinner and nails even weaker than they were before, the fuzzy head feeling is also lessening as I get more used to the tablets, it's a small price to pay for reducing the chance of a stroke or heart attack, although I know there are no guarantees! Although I do wish I could get some weight off, since being on the HU I just can't seem to lose it, I put some weight on as soon as I started on it. I go swimming 4 times a week and have cut out sweet things, but all to no avail. I guess my dreams of being a supermodel at the age of 60 are never to be fulfilled!!
Platelet levels coming down!: I have ET and I've... - MPN Voice
Platelet levels coming down!
Hello Lizzziep, what good news this is, I am so pleased for you. You are a supermodel to us. Maz
Hi lizzziep,
sound good, doesn't it!! Hope it stays that way.
I also have E.T and have been fairly stable regarding the platelets since the very beginning....6.5-7 years ago. As you, I gained a lot of weight when I got E.T. and I also feel that losing it is a bit of a struggle. Yet, I do eat healthy, as I always have done and try to exercise within my own limit. Nowadays that limitit is lower than before...but all my other tests shows that I am fit and healthy..;-)) Supermodel...well, I have a good photo editing program so...;-))...as long as I feel okay I am happy and jolley!
Now you are talking! E.T..External Transformation? Eternaly Terrifying??????;-))
Well done on getting the count down. I too have ET.
Anyway, super models are over rated, who wants to look like a 12 year old boy from behined when you can be curvy and Voluptuous!
Hi My platelets are down also to around the same as yours , I am 1 tab a day then 2 day plus asprin. I swim and do yoga and a little , albeit reduced so as not to over do it. Sounds as though you are doing the right things. I ahve put on about 4-5lbs , probably due to not exercising as intensly as I used to . I am trying to cut down on Vol of food , rather than what I eat ,a s Like you , it is probably good stuff that we tend eat. Good luck Joe
Hi Lizzie, I have joined Slimming World as my clothes were getting tight, so far I have lost 6lbs and can feel the difference. They have a small change box and I am happy to say they took my suggestion of giving some of the cash to MPNVoice. I was about to email Maz to let her know this. I am 75 and 5ft tall so that few pounds makes a big difference. It is not a diet but a different way of looking at food (I would have lost more if I could resist my glass of vino!!!) Good luck ElsieR xx
Thanks for replies! XXX
Adail
Hello Lizzziep, glad to hear your counts are lowering. Would you make a post & mention when you were diagnosed with E.T., and how many mgs of Hu were you started with and your platelet count when starting?
I had mentioned awhile back there is another site mostly devoted to E.T. and have found it very informative and other E.Ter's stories how they are doing, and some succcessful stories as well.
If you are interest in the site, I will write iT again. I am not to computer savey, but you can first try to google mej thrombocythemia site, then scroll down to the section devoted to their forum that is posted yearly , and it should come up, then click on the year 2014 to read some of their stories. You then can find out to join their site ifr you arew interested.
Adail,
Hi Lizzziep, glad to hear your counts are lowering. Would you mind posting again when you were first diagnosed with E.T., what your platele levels were, and how many milligrams of Hu were you prescribed to take daily?
I posted awhile back about another site mostly devoted to E.T. and have found it very helpful. Lots of stories as well as successful stories as well.
If you are interested google mej thrombocythemia site, scroll down to the site dedicated to mej thrombocythemia and the stories that are archived yearly, then click on it. When it does appear, click on the year 2014, and you can read the latest postings. You can join the site if you are interested as well.
They do have a site as well, but I believe it is posted with a different spelling, such as: mej thrombocythaemia,yuku, something like that. The site owner Mark has made a posting on you tube, giving the address of his site & how to join. He too, has E.T. 10 yrs plus. You can read his story. He had yet to go on any medication...........very interesting
Hope to hear from you, and the best to you
Hello Adail
I was diagnosed 3 or so years ago. My platelets were around 550 when my GP senty me to the hospital, then they jumped to 700, stayed around 700 for quite a while then, jumped to 900. The haem said they would probably rise again when I got over 60 and if they got over 1000 I would have to go on HU. Until then I was just on aspirin. I was 60 last April, and in October my count was well over 1000. (approx 1160) (How did it know I'd had a birthday?) At first I was put on 1 x 500 mg per day, which I was terrified to take until I found this forum. They didn't fall much so it was upped to 2 x 500 per day, I continued on that and then was put on 2 x 500 mg per day mon - fri and 3 sat and sun. The platelet levels gradually dropped and last time were down to 385. I have been asked to continue on this dose and I go back 16th April. It does worry me it could go too far the other way! However the Haematology department at the hospital do seem to be keeping an eye on that - so far anyway. Last time I went I saw the specialist nurse, previously I always saw the consultant. I have been given a phone number and a named nurse to call if I have any worries. I've been lucky with side effects - so far - apart from weight gain (I was managing to gain weight all on my own before starting on HU!!) By the way I am JAK 2 negative. I've tried that web address but not found the right one - yet!
To Lizzziep
I have the correct site address for you. Type in mejthrombocythemiacommunity.yuku.com. Page comes up and reads....yuku-mejthrombocythemia-internet forum dedicated to.......,then click on that, and click on the yearly folder 2014 to read the latest postings. You can also click on the previous yearly folder 2013, and sort of get an idea of what was & was not working for some. It is very informative & has helped me a lot. If your interested in joining, you will have to check on how to. or go to u tube.com, and mark the owner of the site has instructions. Just type in on youtube.com mej thrombocythemia , or essential thrombocythemia, and I am sure it will come up. I hope I was helpful to you. I am slowly becoming savey on the P.C
Let ,me know if you were successful.
Adail
Have a nice day........
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Worried about drop in platelet count
