Two years of high platelets.
Posted , 4 users are following.
Went for results of high white blood cells and platelets to Haematologist today. The white cell came back negative, but the platelets are still high, so I have to have a bone marrow test. After having routine blood tests for hypertension in 2015, I was told my G.P. needed to see me, I had been having troublesome pain in my neck and shoulders, so decided to kill two birdswith one stone. He gave me Naproxin for what he later suspected was PMR. which went onto GCA. supposedly in Nov.2015. He also told me I was making too many platelets, and had too much inflammation in my body, this seemingly has hardly ever changed, I was told today that if the bone marrow test comes back negative, the cause must be "all this other stuff that's going on". My mind is now boggled!
0 likes, 11 replies
Oregonjohn-UK catherine34621
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Catherine - this has come up before. I started with a very high count - at 650ish after two years was at 450ish. The cause is Steriods!! I'm now at half a mg and due a blood test shortly as I'm about to reduce to zero - I hope after 2.5 years. My GP confirmed this and also there is some info online about it. Hope this is of comfort to you, John
amkoffee catherine34621
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My granddaughter was in the hospital recently because her platelets were too low. She has a disease called ITP. So I guess you can be too high and too low. I guess they just can't be satisfied. I hope your platelets even out to a good level.
Oregonjohn-UK catherine34621
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catherine34621 Oregonjohn-UK
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EileenH catherine34621
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There are a load of reasons for raised platelet counts - and one is polymyalgia rheumatica itself. However - once you are properly managed on pred and the inflammation controlled the platelet levels should fall to closer to normal range. BUT sometimes steroids themselves lead to a raised platelet count although this is usually temporary.
The fact the level is raised persistently and didn't fall as the inflammation fell, means it needs to be fully investigated to rule out the nastier possibilities. If they are all negative - it must be the "PMR and stuff".
catherine34621 EileenH
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I feel the inflammation has never been controlled, I was told in October 2016, that it was lowering and my pred was cut from 20mgs. to 17.5mgs for 2wks. then to 15mgs. which didn't work, then in december I was told that it had never "normalised" to the figure it should have. I appreciate your comments, thank you.
EileenH catherine34621
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You are probably quite right - the starting dose should really be maintained until the markers (if they are raised) have reached "normal range" at the very least and preferably have attained the lowest achievable level and are stable. But there is this desperation to reduce pred because it is "so dangerous" which then results in inadequately managed inflammation - and a patient who has symptoms and other problems.
Out of interest - did the Naproxen achieve any result?
catherine34621 EileenH
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Not really, I had stiffness in my legs and backside (I mmust be honest,I missed a lot of doses,and went on holiday and didn't take any all week) I then developed a pain in my left top arm, and it wouldn't touch it, I couldn't turn over in bed without manouvres, it was agony. Then my temporal arteries became swollen, my scalp sore and after A&E and taking 40gms. of pred. for two days, all pain disappeared, wonderful. I then was examined by a trainee Rheumy. (who has now been promoted to Consultant and moved to the Hospital I attend and is treating me at present) a lovely person, examined me thoroughly, but as I have said before, because I could reach above my head, had had pain in my jaw and not my cheek as standard, I was told I more than likely didn't have GCA. I was taken off the steroids and put back on Naproxin. Approx. 2 weeks later my eyes went weird, shade lowering etc. once on pred. all symptoms went. Now I am being told the same again. I am not complaining about my treatment, but the sheer stress can't be good surely. I know everyone does their best but you are right all I am told is you must reduce these drugs, they are not good for you, wel I know that!
EileenH catherine34621
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I don't get the desire for all patients to have the same symptoms! The shoulders are NOT always involved in PMR - just as the jaw pain varies in GCA and some people never have it at all. There is a form of GCA that has no symptoms - until the patient wakes up blind, Patients aren't an exact science. I had jaw claudication - I definitely wouldn't have said it was in my cheek and I doubt most people would say it was in their cheek.
Where are you?
catherine34621 EileenH
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EileenH catherine34621
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What hospital do you attend? Tell your GP you wish to be referred to Prof Sarah Mackie at Leeds. That naproxen does nothing - and you have symptoms that DO fit with GCA that are relieved with pred so you want a second opinion from an expert in the field (which Prof Mackie is). You are entitled to choose who you see in England so don't let your GP try to put you off.