PMR/GCA and Warfarin | Arthritis Information

Having been hit last week by the news that my last blood test shows evidence of GCA, today I have been diagnosed with a blood clot (DVT) in my right leg and I am now taking Warfarin. I've had PMR for 8/10 years and have been on Pred for 7 of those.

I haven't properly taken in the implications of this - if there are any! I do see my GP tomorrow, but was wondering if any of you had had anything similar? Anybody got any ideas at all?

I have no knowledge of this but if Mrs UK comes on later she has a wealth of good information. Write out any questions you have for your GP as a lot of times in this position you forget.

My good wishes are with you.

Pat

Thank you - all donations of kind words gratefully received. You have a good name, too! You and me both!Serenity

I did just 'drop in' after answering your question in an email you sent to us. Hope that suffices.

Thanks Teedoff - I have learnt more 'stuff' over the past 2 and a half years than I ever thought I would need to know. Drop in to our website sometime www.pmr-gca-northeast.org.uk we are trying to build up a comprehensive bank of knowledge. Ideas and comments welcomed.
Right, here goes - there's a lot to say now.

When I saw my doctor on that day she was very reassuring. She's also a very clever lady and her immediate opinion was that the basic cause of the DVT was the Pred. It is known to be a blood thinner (although I think that could vary with the individual) and until late last year I had been on varying highish doses, between 10 - 30mg daily for more than 7 years. I had managed to get down to 5/6mg a couple of times, but was never able to sustain it for long. But at that point last year I had come down to 5/6mg daily and I have now managed (with the help of a lot of people) to keep at that low dose since then (almost 9 months now). In fact, since January this year it's been 5mg. I had dreadful withdrawal symptoms on taking that last drop- although I did it slowly- and I stayed at 5mg for a long time, finally taking the plunge at the end of May and starting the reductions again.

She feels that the last small reduction was the problem as at that point the blood thickened up again, possibly rather quickly, with the rather unfortunate result of a blood clot for me, perhaps because, having PMR, I'm not as mobile as I would like to be.

The first 'indication' was the appearance of what looked like giant cells or platelets in the routine blood test I had done in June. Her opinion was that they were in fact 'clumps' of cells which gave that appearance at the time (the lab wasn't looking for giant cells; they were checking inflammation markers) and that the blood was 'sticky' then. The second was a pain in my right leg which, for more than two weeks, I thought was a pulled muscle. This got to be such a problem during one weekend that my husband took me to the local A & E department, with the diagnosis the next day of a blood clot mid-thigh in my right leg.

Well, today's results confirm her thoughts. There are now no signs of any giant cells and the only thing amiss is that the white cell level is 'slightly' raised according to the lab. That is normal for me as I am one of those whose ESR/CRP results are never ever anything but normal (even when I was at my worst) and I regard that result as being my 'inflammation' marker. According to the haematologist some years ago, both PMR and Pred can result in raised white cell levels (the levels had shot up dramatically that time but I was having a flare-up and of course was on a high Pred dose. This happened again a couple of years later, but in both cases the cell count had returned to normal within a few weeks as I improved and the Pred dose reduced). As it is only a little up, I am resuming my Pred reduction programme immediately (with a lot of hope).

I will be checked again in 3 months time and I am hoping that if I can reduce to 4mg daily by then the cell count will have gone down.

In the meantime I'm on Warfarin for the DVT. It's early days yet, and they've yet to stabilise the dose - I understand that that can take several weeks. I am getting some side effects, but they are manageable (with a lot of bad language. I'd stamp my feet, too, if they didn't hurt so much). It doesn't seem to be affecting any of my other meds which is one good thing. I also had Heparin injections to start with and my arm didn't stop bleedng for two days (only a little pinprick - you'd think I'd been gored by a bull).

So it seems I've been both lucky and unlucky. I haven't got GCA but have got a DVT.......and in all my searching and reading over the last few years, I haven't ever come across this particular problem! But if anyone out there knows any different PLEASE let me know.

Incidentally, CathiB - I'm 64 nearly 65 and when the hospital doctor asked me in all seriousness if I thought I might be pregnant I'm afraid I just roared with laughter (my husband was rolling about, too). I know older mums are 'fashionable' these days, but it isn't a fashion I particularly want to follow! I'm sorry to see that you are having such problems just now - do hope you get through it all. I wonder also if raising the Pred slightly would help - even at 5mg, it's still termed a low dose and shouldn't carry any side effects to speak of.

Thanks to all!

Serenity