I have had PMR since December 2020, put on steroids 5th January. I now have very high blood pressure (often over 200) and am also often tachycardic. Waiting to see a cardiologist. I do a voluntary antibody test for two universities which involves pricking my finger. Usually no problem with blood flow as I am on Clopidogrel, a blood thinner, but this week the blood congealed and I couldn’t fill the vial easily. I saw on one website that this clotting can be a spin off of autoimmune disease. Does anyone know anything about this, please?
PMR AND BLOOD CLOTTING: I have had PMR since... - PMRGCAuk
PMR AND BLOOD CLOTTING
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Hirondelle
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It isn't something I have ever come across linked to PMR - but there are a/i disorders where clotting is a symptom and I think is often found in lupus. It is called antiphospholipid or Hughes syndrome
nhs.uk/conditions/antiphosp...
and is more common in lupus patients.
What are your antibody studies for? Covid disease/vaccine antibodies?
Thank you so much for replying. What a brill website this is. I signed up as a guinea pig for the 2 trials on antibodies as I used to do medical research. At the moment, these trials cannot tell me how high my antibodies are. So I have just done a private antibodies test for Covid which I paid Lloyds pharmacy for, as the GP told me right from the beginning that the steroids would affect the antibodies. I have a home in France and hope very much to go there at the end of August. Sadly I have been turned down for the Covid booster trial as I am on steroids. My GP told me the practice was bad on PMR but she was taking a course on it. Despite this, she didn’t advise me to get a DEXA scan but I went for one any way and have now full blown osteoporosis. The GP also says that she wants me off the steroids ASAP and said I should go from 5mg to 4mg overnight (all this from 20 mg in January) but luckily I saw the tapering plans on your page and am doing my own thing. Thank you all for your good advice.
"The GP also says that she wants me off the steroids ASAP"
She does, does she. She wasn't kidding when she said the practice was bad! She wants to condemn you to being back where you were if it really is PMR! And that, in itself is a risk fact since immobility and reduced weight-bearing exercise would make things worse. And there is no option for PMR - pred or nothing unless you live in the USA or a few other countries. And nothing is a very unpleasant experience I can tell you after 5 years of it!
I think it is pretty unlikely that your BMD has fallen that much since February, even on pred and especially if you are already at 5mg, and she should be looking at other things, not taking you off pred. What are your t-scores?
You shouldn't have too much trouble with the return of adrenal function after such a short time and already being down to physiological levels of corticosteroids. You may be very lucky and get well lower than 5mg but only a slow taper will demonstrate that. It MAY even be a reactive form of PMR - I am quite sure that exists and is the reaspn there are small numbers of patients who support the "under a year" claims for PMR goinginto remission.
Presumably you can only go to France for 3 months now? Or do you have a French passport with a name like hirondelle?
I went to a new doctor's this morning (very young - about 30 I guess) so quite recently qualified I presume). She informed me that NO-ONE with PMR should be on Pred for 9 years!! That presumably means we two are hypochondriacs (as are others on this forum).😏 She also said I MUST come off Cocodamol and use paracetamol only - and that only when in severe pain!
I informed her that I had tried VERY hard to cut down on both but with ongoing PMR (4mg) and seronegative polyarthritis I want to live the rest of my life with as little pain as possible.
I thanked her for her time and left.😏
This was meant for PMRPro!
Yes - bit naive that! An Allgemeinaerztin? Can't see what is worse about cocodamol than paracetamol on its own. And after 9 years on pred - you probably need the pred for adrenal function - or hydrocortisone. So you are killing both birds with one stone ...What happened to your usual guy?
Thought I should look for one nearer home. Sometime in the future we will have to do without a car.😢😢😢
Needless to say - will put it off till we don't have a car.
Hmmm - well she scored a resounding fail in the interview didn't she!!!
Oh dear, the arrogance again!.....is there no other doctor in the practise......
Wouldn't bother! Will wait till it is necessary.
Sensible - and there must be such things as taxis 🤔
€25 each way!!
Peanuts if you have a good'un.
How often do you go?
Perhaps a jam jar and starting today starting putting all your shrapnel in. 😉😘😘
PS Haven't a clue how much 25 euros is worth in sterling either. xx
£21.45! Don't go often but if it's blood stuff it's 2 days then dr appointment in one week.
It's not that I can't afford it, it's just goes against the grain. It's only 6kms away. Will have to bite the bullet when the car goes!😥
You must have a friend - I'd take you if I lived there! It's the same for us actually - our GP is in a different village, not even the town which has a really good bus service. There are 2 doctors in this village but although originally we were with one here, she decided to move into town for more business (private diabetologist) and we were allocated a different one in another village. Now a second practice here again but the 100 extra spaces she was given last year were gone in hours! There is a direct bus - but it would take all morning - and half the afternoon if you just missed a bus!
I have a daughter who lives in Soest but she's always soooo busy we don't like to trouble her. Would do so if it was urgent.
Rubbish - you just have to get it organised properly. My daughter and husband travel from Whitby to Hartlepool to take his aunt to medical appointments.
Guess what you will be be quids in when you give up the car - no tax, no insurance and no fuel costs, no parking costs and no MOT (perhaps the last is only in the UK)
I gave mine up and took taxis and when I gave it up I put the money to one side that I spent in a year on the car I then kept a note of taxi money and at the end of the year - was £51 pound left over.
I then realised once over 70 I had used the car less.
PS You will also be helping to save the planet. 😈
We've both realised that we will at least just be as well off when we give up the car - it's just the absolute convenience of stepping in and driving off that we will miss. D doesn't drive far, but a quick trip to the Möhnesee (remember the bouncing bombs)?!? etc etc.
The joys of getting old!?! Who can grumble though? We've had a charmed life so far - long may it continue.
Greetings dear friend. 💐💐
They have said for years that unless you drive a lot it is cheaper to use taxis. Mind you - taxis in the UK are rather cheaper than here! OH wanted to get a new car 2 years ago and I procrastinated. So glad I did - since Covid I have filled the car twice and got 2x 20 euros worth to keep me going until I could head for Austria (border closed). That means well under 2000 miles in a year! No depreciation on this car either. But I do have the convenience of it being there when I want it ...
Think what the car costs to run, and keep insured. Then it seems like a better deal!
It's not the money - it's the inconvenience!
Interestingly enough, the rheumatologist who took the Webinar last week did say that if you had had PMR for over four years, I think it was, it probably is not PMR. I wonder where they have picked that bit of information from.
Well! Whatever it is PMRpro and I both have it (me 9 years, Pro over 14 years). Of course it's just because both of us really "enjoy" taking pred. Just think how we'd miss it!?!🤪
There are more of us in this party group - we love pred❤️❤️❤️
I would like to have a f2f with Sara - because no-one can identify another option besides PMR!
Hi Constance, she wouldn't be very happy with me then, I've been on Co-Codamol for around the last 30 years and no I'm not addicted to it, for me it has been mine and my doctors go to for my OA.
Quite! And this is a 'modern' doctor!!!
It's the only thing that helps my pain too.
Thank you again PMRpro. I’m afraid I am ignorant as I don’t know what the t scores or BMD are. As to my Hirondelle pseudonym, my father moved from Cornwall to Provence in 1960 - we couldn’t believe the heaven we found there, after rainy summer holidays in Cornwall, Scotland or Austria (where my mother came from). My real name is very Cornish, after a cove, Lamorna.I am about to sit down and read all the amazing replies to my post. So grateful for all that help. I don’t know what course my GP is own but she is very brusque and when I said I thought that perhaps I should defer dropping from to 5 to 4 mg as I had a very stressful couple of weeks coming up with an exhibition of my work, she shouted down the phone “be brave, go for it”. Grrr.
t-scores are statistical measures, standard deviations, and used to classify Bone Mineral Density as normal, osteopenia and osteoporosis.
Bit wet in Austria tonight - and they have sent it over here! Our electric just flipped out after a nearby strike ...
Obviously NOT a how to be kind to patients course ...
My brother lives in Lamorna Cove. Bloomin long way for me so rarely see him, and certainly not possible now with LVV I can't cope with journeys much more than an hour at the moment.
Just the kind of stress a person with PMR needs! That was intended to be reply to Hirondelles's GP's 'Be brave.......'
Well said PMRPro !! : 'She wants to condemn you to being back where you were if it really is PMR! And that, in itself is a risk fact since immobility and reduced weight-bearing exercise would make things worse. And there is no option for PMR - pred or nothing unless you live in the USA or a few other countries. And nothing is a very unpleasant experience I can tell you after 5 years of it!'
Whenever I hear this kind of stuff - when people (often doctors) derogate Prednisone like some kind of dreaded 'evil' I am horrified. Let's face it almost all (I won't dare say 'all' of course) have had our QOL dramatically improved by having access to Pred. Of course none of us would have chosen to take it for flippant reasons but given the condition we could be in (blind dead from strokes etc) the fact we CAN have it is wonderful. Yes like many here I am sick to death of my PMR/GCA which has 'flared' or at least amplified a bit again lately - as it seems to do annually (even after 5 years) and having to at least temporarily 'up' my dose - but it WORKS well when I must do that = and I can move my neck and shoulders again without any problem. I am in fact feeling very GRATEFUL today for this often unfairly maligned 'drug'. Hope you are 'well' yourself at present PMRpro X
I don't want hi-jack this thread but you said that unless you live in the US there is no alternative to steroids. I live in the US and was forced to stop pred due to severe osteoporosis leading to multiple fractures. I'd like to know what the US has to offer. I've tried DMARDS, methotrexate, leflunomide and aspirin. Nothing helps. I have so much pain it's hard to keep living. What am I missing? Please tell me you have the answer.
Actemra/tocilizumab seems to be used by some rheumies for both GCA and PMR even though it isn't approved for PMR.
My gosh, if your doctor is supposed to be doing a course on PMR she should know the basics that you do not remove the steroids until they have done their work! PMR decides that not the doctor. I wonder what course she is doing.
I wonder who prepares the material that she will learn from on the course. Would it perhaps be appropriate that she takes a look at this forum?
Hello Hirondelle,
I have the autoimmune blood clotting disorder that PMRpro has mentioned to you, APS, the acronym for the antiphospholipid syndrome.
Sometimes it’s also referred to as Hughes syndrome, after Dr Graham Hughes , who with the help of a team of researchers and colleagues first described it in 1983. ( some of his lupus patients were clotting , and he set off to find out why- and found they had additional antibodies that were prothrombotic.)
I’ll include a link for the London lupus centre at the bottom, where it goes into a brief overview. There are APS specialist consultants there, as well as a list of other rheumatologists across the uk on the NHS . You should be able to find one in your post code. ( not all are as good as others, so come back to me privately and I’ll ask around for you.)
There are other tests in the mean time your GP can run. Protein S deficiency, protein c def, factor V Leiden, please be checked Hyperhomcysteinemia, and as always that annoying question…. We’re you dehydrated? ( of course I’m sure you were not.
Usually APS develops in younger women- you will have had a history ( not always but often times) of migraines , multiple miscarriages, early births, or tragically a still birth perhaps. Preeclampsia is also a complication. ( poor blood flow to placenta/ cord due to sticky/ thick or clotting blood is the culprit.)
Strokes/ TIS’s, DVT’s, chest pain, Abdominal angina ( tummy cramping - poor blood flow- microvascular clotting) to bowels - all to blame.
Blurry vision at times- poor balance- those tiny capillaries are not flowing blood into the nerves…
Often on our letters initially it reads… “query MS.”
Atypical MS is usually part of our work up.
Steroids to help. antiphospholipid antibodies
Attack the vessel membranes and also a protein in our blood. We suffer a an APS vasculitis, many of us. It can be in any vein or artery, so any and all organs are affected.
The good news- blood thinners do help . There is no cure, and it does not self limit. We will help you on our HU APS - Hughes site.
I would not automatically assume you have APS .
A good rheumatologist ( who does need to be well versed in APS- not many are because it’s quite rare) will help you figure this out. Family history will be important here. Its not hereditary, but usually there is the “autoimmune in my family ” component - usually lupus , and thyroid somewhere close.
This site has been my safe haven for learning about steroids. 🥰
See if you recognize yourself here:
I really appreciate all the info. Unfortunately I live in the US so the referrals are no help. But I have a great rheumatologist and may talk to her or my GP to see what they say. I had a DVT at 47 yo, a stroke at 48 and a TIA at 49. I was finally put on Clopidogrel after the TIA and I've been on it ever since and have not had a blood clot since starting it.
I’m in the US- there is a list of specialists in the us on the list.
Your rheumatologist can run the APS panel. ( if it comes up positive twice in a row - 12 weeks between each test just to rule out a false positive) - then you would be sent to a hematologist. Most often warfarin is prescribed.
I’m not sure why your rheumatologist has not checked you for APS unless the reason for the stroke is already known. ( PFO for example.)
I guess I should have assumed. TY for the info.
I think that a high platelet count can be associated with PMR and they are involved in the clotting mechanism. Mine were high at the beginning but they resolved eventually.
Interestingly some patients with IBD, Crohns or Ulcerative colitis, also autoimmune conditions, have genetic variations that increase their risk of a clot (maybe COVID patients also). My platelets also increased with PMR.
Yes. I've had PMR for 4 years, am on 10mg Prednisone. During this time I have had blood clots in the leg, and pulmonary embolisms in both lungs (hospitalized ) After that, I was put on Eliquis 5mg 1x a day, developed another clot in my leg, they bumped the Eliquis to 2x a day. During this time, my Dr. sent me to a hematologist who found I also have antiphospholipid syndrome (thick blood.)
Next - I had a new aortic valve put in my heart in February of this year. The cardiologist added Plavix. In May they found it was not working - a clot had formed in the new valve - because, my Plavix wasn't working. They switched to 90mg 2x a day of Brilinta. (ticagrelor). It's working. I'm better. The valve is functioning and I go for another echo soon.
What an ordeal.
I do not know if this is a cross over from PMR or totally independent. I DO know the doctor told me the PMR was guilty of speeding up my valve damage.. by a lot.
My body is home to 5 autoimmune diseases - Hashimotos, Behcet's (remission) PMR (active),
Reynauld's (active) and antiphospholipid syndrome (active).
My doctors check for lupus often. The symptoms are there, the blood work doesn't confirm it. Oh! I'm so thankful..
It's wearisome, I'm taking both Eliqis and Brilinta, so I am a bit careful of cuts, etc.
Still, when getting blood work done, my blood doesn't flow easily!!
Everyone is so different - this is only my personal experience. The doctors just shake their
heads, but they are believing me.
I'm thankful to have doctors who are so good, do listen and are ordering the right tests!
I hope you find answers and solutions, too.
MariGrace
MaryGrace,
Are you feeling ok on Apixaban? Usually you will need to be on a statin as well. ( even if cholesterol is ok.)
Yes- twice a day with the apixaban.
Dr Jill Schofield in Denver sometimes doses her patients 7.5 mg in evening and 5 morning dose.
I was on a trial for apixiban under her but did clot quickly. ( I’m an unusual case. )
I had to go back to warfarin/ Coumadin. ( which is a huge hassle. I really wanted the apixaban to work.) I hope the Apixaban continues to work for you, and there is no reason it should not. Just know statins are recommended-
Health Unlocked has a forum if you need extra support or any questions. Peer reviewed medical papers?
Ok with Eliquis 5mg 2x a day and Brilinta combined 90mg of Brilinta 2x a day.No cholesterol meds. I have had 2 heart caths, no problems.
I have had 3 TIAs. The plavix was changed to Brilinta when they happened. Since adding that med, I am better. We will find out how my valve is working July 1.
Thankful,
MariGrace
Very thankful you are well. Long May it continue!
I developed PMR and GCA 3 weeks after replacement knee operation nearly 3 years ago. Because my doctor didn't recognise the symptoms of GCA but did the PMR she advised me to wait to see a rheumatologist, but because of a mix up with the appointment at the hospital I began taking Prednisolone as a stop gap. Five months after the initial diagnosis of PMR I was diagnosed with Peripheral Arterial Disease (blood clots in the legs). I was rushed into hospital for an emergency Angioplasty, which wasn't a success because the clots were so bad. I came out of hospital but was rushed back in again. To cut a long story short I ended up having a leg amputation. Medical opinion says it COULD be the PMR which caused it. I sincerely think it is. I have never had a day's illness in my life and was very active. I think the knee replacement kicked off a series of events, an immune reaction to it, followed by the PMR and the GCA, causing the PAD. The only thing I can say is I'm still alive to tell the tale. Things could have been a lot different. Incidentally, I'm still taking 5mg of Prednisolone as a maintenance dose. I was told it is a precautionary measure to stop inflammation of my veins.
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