Hello all you lovely people. My platelets have been rising slowly over the last few months. I went to see my haem 3 weeks ago and he increased the hydroxy because he was concerned that 545 was too high following my 'cardiac event' in April when I had two stents fitted. We had quite a heated discussion because he was very dismissive of side effects and symptoms such as fatigue and bone pain, in fact of most side effects. He more or less told me I should be grateful he put me on hydroxy when he did, as if he hadn't my heart problems could have been significantly worse. He may be right but I was very upset and talked about a referral to a specialist. Anyway to cut a long story short, we eventually agreed that I should increase the hydroxy and return in 3 weeks and if I still felt the same he would refer me on. He also agreed to see me himself each time in future, rather than see someone different each time, which is a big step forward. Anyway I went again on Thursday having taken the higher dose only to find that my platelet count had jumped from 545 to 646!! This appointment was much calmer and my haem actually took the time to talk about side effects and symptoms. We even discussed the possibility of transformation from ET to MF, though there are no signs at the moment.
He has increased the hydroxy dose again and have to go back in 4 weeks. The frightening thing was that he said it is possible that the hydroxy has stopped working and if it continues to rise he will have to consider changing it or adding something else to it. He said that the side effects of the other drugs could be much worse than hydroxy. This obviously worried me but at least he is talking to me now instead of brushing off my questions. My platelet count had been quite steady for two years and this has all come as a bit of a shock to me, especially on top of my recent heart problem.
Watching the forum on line on Friday went a long way to easing my worries. It's just wonderful to see such passion for their subject in doctors who care for people like us, and also to hear from fellow sufferers. Sorry for such a lengthy post, but it helps so much to share with you all. I know that some of you are much worse off than me but you always find it in you to be positive and thats what I am trying to do, although I am not always successful. Anyway, onwards and upwards as they say.
Thank you for listening, much love to you all
Karen xxx
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Nickthedevil
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Karen, Hellooooo - Gee your appointments sound much like mine have been over many years. Getting to see the 'main' man so to speak was one of my bugbears as I went nearly 2 yrs seeing Registrars one of which was down right rude and dismissive about my MF symptoms. I refused point blank to see him again. However I have a number of very good ones.
It is a tad concerning that your Platelets are rising in spite of increasing your Hydrox dose so maybe it just takes a little time to adjust and level out. . Or maybe you need a different treatment unless you've tried them. . As for transformation to MF I don't know what causes that but if you have no outward signs I wouldn't worry unduly about it. MF usually significantly enlarges the spleen as it goes but I don't know if you guys with ET get that as a symptom.
Anyway I'm glad you took time to share your concerns with us and do try to stay positive. Got to sit down to the best cooked brekky in Blackpool now , it's a hardship but someone has to eat it.
Hi JR. thanks so much for your reply. Sorry you had the same experience with your haematologists, it's so frustrating! I am keeping my fingers crossed that the count levels out or drops over the next four weeks, but if it doesn't and they change the meds so be it. ET doesn't have enlarged spleen as a symptom as far as I am aware. I just need to stop worrying and get on with things as I have for the last two and a half years. I think I am just finding it hard to cope with lots of things after my recent scare. Anyway that's enough feeling sorry for myself! Hope you enjoyed your breakfast. There's nothing like rubbing it in - I am trying to lose weight and reduce my cholesterol so it was a big bowl of mixed fruit and fat free yoghurt for me.
hope you are ok
Karen x
Hi Karen, so sorry to hear what you been through , i get what you mean re fatigue ,my heam dismisses this with me , but i at least see same lady each time ( she registrar) and at moment is holding off giving me HU although platelets are 526 sorry too hear also fact you had op re cardiac event , but yes sometimes we need to say what we feel at these hospital appoiments because we know how own bodies , i didnt get to see the forum at guys , but it seems to me alot of heams we see localy ,gpdont really know alot about these MPDs and i have found out more from this site . but like you my platelets are slowly rising in last year but its a fact we are in there hands and hope they know what there doing ! in treatment we are given etc , i have ET but reading jedireject post i dont have an enlarge spleen and my other blood counts okay and i think same a him ,that maybe just a blip and you need to get used to the HU , try and stay positive and if you feel you want second oppinion tell them that your not happy i wish you all the best Karen and you are not on your own while you have all the lovely people on here Holly
Hi Holly thank you for your reply. It's so great to be able to 'talk' to people who understand. I am hoping you are right and it is just a blip and that the increased dose will bring it back down this time. I will keep you posted in 4 weeks. I hope your count stops rising because to stay off the hydroxy for as long as possible is good.
It's a shame you missed the forum, it was excellent. I believe they are going to put it on the MPN website in the next week so it would be good for you to see it then.
My platelets had also risen at my last appointment despite being on the HU but I'm lucky that my heam was prepared to listen to me and when I said I'd had a bad tooth infection and an extraction and a couple of other infections and I am selling my house which is stressful he agreed that these things could cause a rise in platelets and he would treat it as a blip so left me on the same dose . Hopefully yours is a blip too .
I have ET JAK + and I do have a slightly enlarged spleen .
I'm looking forward to the catch up of the forum as I missed it
Hi Helen it's good to hear that your haem listens to you, you are indeed lucky. Sorry to hear about your infections and stress, I have heard before that this can cause a rise in platelets. Hope yours settle down. It's interesting to hear about your slightly enlarged spleen, I didn't know ET sufferers could have that. We learn something every day from this site which is great.
Hope you enjoy the forum.
Take good care
Karen
yes when my bloods came back in the first place ! my Gp said could be due to infection in body! Then after 3 month was still rising so was reffered to heam , She kept saying it was due to my Arthritis !! but i knew it couldnt be , because i have had that for over 20 years so yes sometimes a rise in platelets can be due to other things going on in body i thin and will go down when inflamation / infection settles , 😀
I had exactly the same problem with platelets and the fact that HU was not working any longer. My haem, a really good doctor but not an expert on MPNs, did not want to raise the dose above 19 tablets a week so he put me on Anagralide. This has lowered my platelets to around 350 for the first time. I have not had any side effects from this but now I am anaemic so the dose has been lowered and am back on low dose of HU. Back in 8 weeks. I understand Anagralide can have an effect on your heart so perhaps you would not be prescribed this because of your previous history, but it does reduce the platelets.
Hi Sally thank you for your response. It's good to hear you didn't get any side effects on anagrelide as I have heard they can be quite bad. If I do end up having to change I will certainly make sure I talk to the doc about the heart aspect. Hope your anaemia comes under control.
Hi Karen - sorry your results are rising at the mo - I have ET and find mine fluctuate a lot and my haem tweaks my Hydrea dose mist appointments juggling it with keeping platelets reasonable and no being too anaemic and my neuts too low. My platelets had raised at my appointment last week and was anaemic too but neuts reasonable - so I think with ET it is a bit of a game like this for most of us so you may well find you are actually just "normal" for ET - I know it's lowering when you go and the results aren't great and you did th right thing log in here and get abit of support and swop notes - because we all DO understand - I have very good consultants but even they don't really deal with side effects and their impact - I think it's a case of unless you have walked in the shoes you just don't understand. Take care and keep us posted how you go along.
Thank you. You are right about the fluctuation but I think I just panicked when they jumped up after the dose had been increased. I have relaxed a bit more now after all the lovely posts from people who understand. Thank goodness for this forum! I will keep you posted.
I have E.T.JAK NEG. My platelets go up and down according to the dosage of meds I'm on.
Also stress does affect my levels. I had to deal with the passing of both of my parents and my parents in law within a 2 year period and my platelets rose considerably.
After this, I had a stomach bug which involved a short stay in hospital and when my next blood test was taken, once again my platelets had risen.
I've been on hydroxycarbamide for almost 10 years now and after a fairly long period of blood levels being reasonably stable, they have become erratic. So whether our bodies become too used to the meds over time is a question I will ask at my next consultation (telephone clinic).
I have already requested an appointment with my haem consultant for the next time to discuss options.
Hi Mol - I came off HU after 8yrs or so because it wasn't keeping my counts stable and all the dose tweaking was done with. There are peops on this forum that have managed on it for much much longer, up to 20yrs, so I would guess it's down to individuals and how their MPN impacts them particularly in terms of how it progresses.
I am sorry to read about your family bereavements it must have been a traumatic 2 yrs for you. I do hope you get sorted out at your next appointment. .
Hi mol thanks for your response. I am so sorry to hear about your family. You are right about the fluctuations. I have heard that we can get used to the hydroxy and it stops working. I hope you get on ok at your next appointment and have some positive news.
Thank you for your reply. Yes, it was rather a traumatic time for us but on the other hand, we did have both sets of parents for a very long time - they were 89, 90, 90 and 94. Now we have 4 grandchildren, a joy in themselves.
Everyone reacts differently to different meds, BUT, I found that Agrylin was much easier on the system than was Hydroxy. Am now on rux and - so-far-so-good. Fingers crossed. Opinion: Any doc who says "you should be grateful" needs to do an ethics check.
Keep your chin up Karen - I did not manage to listen to the forum yet. I plan to take some time tomorrow and listen. I have been on Hydroxy for 10 years 500 and 1000mg alternatively
Thank you Normski for your support. I am hoping that my next appointment will show a decrease in platelets but if not we will deal with it. I hope you enjoy the forum.
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