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Date: 10.11.2013
From: julie

Subject: high platelets

can anyone tell me if they have experienced their platelets rising. I am on mtx injection, plaquenil, sulpha, folic acid, 2 steroids daily. My CRP never goes down and now they are sending me to heamotology about my platelets rising. Last year they were fine, I was diagnosed in February this year and over the year they have gone up and up, apparently mtx causes a drop if anything. I am really scared this is the start of leaukaemia. My knees are okay now but my hands are always swollen and my knuckles red. I hope somebody can give me a bit of reassurance. I have frightened myself more by researching too much.
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Date: 10.11.2013
From: rhona

Subject: Re: high platelets

Hi Julie, I had a look online about high platelets and seemingly there is quite a few things that can cause platelets to rise. If you have a high CRP then you probably have quite a bit of inflammation going on and that could cause them to rise. Also being anaemic can cause it to happen and even steroids can sometimes cause it. Try not to worry to much. If they were extremely high and they suspected anything more sinister then I would think they would have admitted you to hospital. It is good though that they are checking it out.
Let us know how you get on. x
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Date: 11.11.2013
From: julie

Subject: Re: high platelets

thanks Rhona, they do seem to be having trouble getting my inflammation levels down, crp at last bloods was 216, platelets were 548, been rising since I started treatment. I will try not too worry but its so hard, I feel as if it is only a matter of time before I am given bad news, its so hard to stay positive with this illness. Maybe I am just very down at minute and should shake myself out of it, I have the most wonderful husband who looks after me so much I don't want to worry him aswell (although he probably is) Thankyou for being there.
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Date: 11.11.2013
From: rhona

Subject: Re: high platelets

I know it can be so hard Julie but try not to let the disease win. My CRP was over 200 eighteen months ago until I was put onto a biologic drug called rituximab so perhaps you could ask about getting onto one of the newer treatments. I worry all the time too but that will only make your condition worse. Why not give one of the nurses at your clinic a call and see if they can give you some reassurance. I wouldn't think it would be anything like cancer so try not to think of that. Take care xx
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Date: 11.11.2013
From: julie

Subject: Re: high platelets

thanks Rhona that is reassuring. At last appointment I did ask if I might end up on anti TNF she said it looks like that's the way we are going. I have appointment next week for CT scan on lungs, the week after on Monday the heomotologist then day after on the Tuesday I see my rheumatologist consultant, it seems like its going to be a rough couple of weeks. Last night in bed I was absolutely soaking wet through even my hair was soaked, don't know if its the drugs or if I'm not very well, its so hard to tell these days. I really appreciate your time and and its nice to know that Im not the only one who goes into the 200 crp area.
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Date: 11.11.2013
From: rhona

Subject: Re: high platelets

It is a lot to contend with Julie. I hope the scan is clear and everything works out for you. Take care and keep in touch. xx
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Date: 26.11.2013
From: julie

Subject: Re: high platelets - update

Hi again, went to see heamotologist consultant yesterday because of my platelets rising, after all the worry he said he doesn't think there is anything wrong with my bone marrow because if there was my platelets wouldn't go up and down they either rise all the time or fall all the time. He is still sending bloods away just to be sure but he said he isn't expecting anything other than negative. Even if they rise again he said he probably wont act on it. He did say that they do rise with inflammation and that my inflammation has dropped from over 200 to 16 and my platelets have also dropped to 320 (below the 400 mark) so all I have to do now is get results from lung ct scan this afternoon from rheumy and see what she says now. To be honest if this is as good as it is going to get I will be over the moon, I don't have much pain or discomfort and can easily cope like this. Will update later on after my appointment this afternoon. Thanks for all help and advice given.
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Date: 26.11.2013
From: Sean

Subject: Re: high platelets

Hi julie - I have read about high platelets being one of the main signals for celiac - have you ever been tested. BTW - celiac often presents in other ways apart from gut issues -

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3128725/

Also found this on the platelet disorder official website - which I will add to my research list -

http://www.pdsa.org/treatments/complementary/food-as-a-cure.html
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Date: 27.11.2013
From: Julie

Subject: Re: high platelets

Hi Sean, no not got Celiacs thankfully. But I will read your research sites should be interesting to see what other things cause high platelets, although I do tend to scare myself reading too much.
thanks
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Date: 27.11.2013
From: rhona

Subject: Re: high platelets

That's good Julie, I bet you feel a bit more relieved now. Take care xx
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Date: 27.11.2013
From: julie

Subject: Re: high platelets

thanks Rhona I do feel a bit easier but will be better still when bloods come back negative in fortnight, fingers crossed.

Hope you are okay at moment and not having too much trouble and not in too much pain. What meds are you on?

I think after Christmas I will be going onto anti tnf rheumy said she thinks the only reason I am doing well is because of the steroids only on small dose but cant be on it forever.
take care
Julie
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Date: 27.11.2013
From: rhona

Subject: Re: high platelets

Hi Julie,

I am on mtx, sulph, plaquenil and just recently had my third course of rituximab. I was really bad last year and I was also on steroids then but since getting the infusions I have been a lot better (thank goodness) as it was horrible.

The reason they try us on the other drugs before offering the anti-tnfs is because they are a lot cheaper but when they stop working or don't work so well they usually offer the more expensive ones.

Why have you to get a CT Scan of your lungs Julie?

Take care. xx
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Date: 28.11.2013
From: julie

Subject: Re: high platelets

Hi Rhona, we are on same meds except for the rituximab, I also take diclofenac, iron, folic, prednisolone, I think at moment I take 19 tablets a day that's not counting the painkillers, which I don't use a lot.

I had to go for CT scan as they were checking everything to make sure nothing else was causing the inflammation and I think because there is a version of Rheumatoid that affects the lungs (that one Im not 100% sure if I got it right)

At beginning of February I took a sputum sample in myself cos g.p. wouldn't listen to me about me having this bad mucousy feeling (I wasn't diagnosed then) it came back that I had staphycocous infection. Took antibiotics but no one tested to see if it had gone, so I think whe I was diagnosed with RA I have still had this infection in the background - after weeks of feeling ill I took in a sample and asked for it to be tested, this was about June time, it came back that I still had infection. So antibiotics again, but after having it checked this time it has cleared up.

I got diagnosed in Feb this year and I think all year I had been taking meds for RA while I had infection and I think that's why they weren't helping. I had a year of being really ill, in fact I thought I was going to die, not being drama queen, but that's how ill I felt, couldn't do anything for myself and the pain was so bad. But now I feel lots better.

Why did you have to have a third course of rituximab, do you only go on it for a while? How do you find it and do you inject it while still taking all the other dmards? I don't know what they are going to put me on, probably the cheapest.

All I know is that my g.p. wont like it. He comments on me always wanting the best!!!! I also have underactive thyroid and my consultant put me on the expensive treatment for that which is totally different to the generic thyroxine and a couple of times this particular g.p. has commented on that.

But at the end of the day our health comes first and if the best is good enough for the rich then it should be given to us all, they would save a fortune by not going the cheap route first. Take care and I hope you continue to feel better.
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Date: 28.11.2013
From: rhona

Subject: Re: high platelets

Hi Julie, That is good that they have done the scan then, I guess when we are on mtx etc it does lower the immune system and that is probably why it has taken so long to clear. I might be wrong but I thought they would have taken you off the mtx while you were getting treated with antibiotics but I may well be wrong in that. I do hope it is all clear for you now.

I also have an underactive thyroid but a new doctor I have now has recently reduced the dose so I don't know how long I was taking too high a dose, although I am starting to put a bit weight on now that it has been reduced. Thyroid problems must be quite common in RA. I also get B12 injections every three months.

I get the rituximab by infusions, it is painless and it is like a drip and it goes into a vein in my arm. I go into hospital in the morning of the infusion and I am in there most of the day and then you go back 2 weeks later for a 2nd dose of it. That should last for at least 6 months and some people can get a year or so before needing it again. You are supposed to take mtx along with it and I was told to continue with my tablets but I have cut them down a bit now, I now only take 10mg of mtx, I just decided to cut it now myself and I don't even know if it helps anyway. Before I got the rituximab I was on Enbrel injections, they were quite easy to do but they didn't work for me so that is why I am now on rituximab.

The newer drugs are all fairly expensive drugs, I think the rituximab costs around 4000 per course, so that is 8000 a year if you are getting it twice a year but it doesn't come from your doctors budget, just as well as the doctor I had would hardly give anything out. If you need the drugs then you should get them alright as it is the hospital that will prescribe it and arrange it for you, you won't get a prescription from the doctors for it at all, the Enbrel is delivered to you at home, there are quite a lot of different types of biologic drugs or anti-tnf drugs. I do feel it has made a big difference to me, I dread ever going back to the way I was eighteen months ago. I hope whatever they give you works as well for you. They usually try the other the anti-tnf drugs before giving the rituximab it is a biologic drug, I don't really know the difference, just that this one targets a different part of the immune system (B cells).

Take care and keep in touch. xx
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