High platelets and poor consult: Because of high... - NRAS

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High platelets and poor consult

28maggie11 profile image
13 Replies

Because of high platelets GP practice contacted rheumatology. Nurse said she would refer me to consultant (new to post). I got an appointment the next week. Well she thought I was there for a routine appt I had to tell her I was referred. She felt my joints very gently and actually said I don't know why your platelets are high as joints 9pmare fine. I did say they were internally extremely painful. I am on rituximab had my 2 infusions January. I expressed concerns to previous out of retirement consultant that it was no longer working. She then asked me if I wanted to continue with rituximab I replied that I was aware it was in my system until July. She did arrange different bloods to be taken and a referral to physio and a dexa scan. Sorry for rant.

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28maggie11
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13 Replies
rab1874 profile image
rab1874

Rant away Maggie that’s what we’re here for,my ALT bloods are a bit high at the moment so there going to ween me off methotrexate on 20mgs at the moment but about to go down to 15mgs and still on Toximilunumb xxxx

weathervane profile image
weathervane

Hi maggie , its good that your rheumy has arranged for more bloods and a scan ,at least thats a plus . I have found that it can take 12 weeks at times for the rituximab to work and some times it doesn’t always work as well . It is very frustrating when your doctor doesn’t appear to be up to speed . If you are still concerned do contact your rheumy nurse . Look after yourself , best wishes xxx

28maggie11 profile image
28maggie11 in reply toweathervane

Thank you

AgedCrone profile image
AgedCrone

Rtx infusions can sometimes not appear as effective as the last one......I’ve been on it for four years now and although I am not 100% pain-free 100% of the time it really is the most effective drug I’ve tried in 20 odd years. Only had a couple of flares and that was when I was trying to go longer than six months between infusions.

Don’t abandon it thinking the next drug will miraculously return you to your preRA condition....because sadly it most likely won’t.

28maggie11 profile image
28maggie11 in reply toAgedCrone

My worry is my platelets being high. The new rheumy said she does not know why platelets are high. Not filling me with confidence

AgedCrone profile image
AgedCrone in reply to28maggie11

Are you taking Mtx with the Rtx? Rheumy probably won’t know why platelets are high until a comparable + set of bloods are back from the lab.

I’d rather have an honest answer than be fobbed off with platitudes wouln’t you?

She has sent you for a scan, & some physio......sounds like she is trying.

I find in all specialties the doctors who are cautious tend to come out on top!

As you are finding out - RA it’s not a one-stop job!

28maggie11 profile image
28maggie11 in reply toAgedCrone

Thank you. I have read some of your replies before and have found them so sensible. I will await blood results

28maggie11 profile image
28maggie11 in reply to28maggie11

Ps. Cannot take methotrexate

Moomin8 profile image
Moomin8

Hi, I know this post was a while ago...but my platelets are raised - 473. I've had one round of Rituximab and I'm on 22.5 mg methotrexate. My ESR reads 115, which isn't good, plus I'm slightly anaemic. Did you get any answers?

28maggie11 profile image
28maggie11 in reply toMoomin8

Sorry still having bother with rheumy. Platelets ok but I am taking cannabis paste which seems to be keeping me steady. My GP explained it was a sign of my RA

Moomin8 profile image
Moomin8 in reply to28maggie11

Thanks, hope rhemy gets sorted...that's a long time to have trouble!

I think platelets are high when your body is fighting infection. You should be offered follow up bloods..

Moomin8 profile image
Moomin8 in reply to

Thanks, I'll follow that up.

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