I have had PMR for nearly four years and via DSNS I am now just about down to half a mg. I went to the doctor fairly recently over a number of issues and had some blood tests. I can see some of my results online and notice that my rheumatoid factor is 20. I’ve read that over 15 is abnormal but don’t know how high this is.
She has written to me today and said that “one of your antibody screens is positive but this has been subsequently further investigated and is negative”. I will discuss this further with her but she is away at present. Because of my dry eyes and mouth she thinks I have Sjögren’s syndrome.
When I had been on steroids for a while my face changed, rather in the style of a hamster than a moon. A new pad between the base of my ears and the angle of my jaw. This has not reduced even though I am on such a low dose. I am now wondering - have I had Sjogren’s all along and not PMR or have I maybe had both. Are many of you in this situation. All advice greatly appreciated.
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MaryWR
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I believe it's another AI disease, it seems if we have one we can go on collecting them. My doctor has suggested Sjogrens to me....very dry mouth/eyes or Sicca syndrome??.....but don't think there is too much can be done about it....someone on here will likely have more knowledge.....
The Locum Consultant has also suggested Sjögren’s to me & is testing me for many other Autoimmune Diseases, l was at GP’s today for another raft of Blood Tests & GP says l need a Liver Scan because of my high ALT Levels & they’ve stopped my Methotrexate.
After I’d left the Doctors, they rang to ask me to go back for two more blood tests but as l was then arriving at the Salon to have my Nails done 💅🏼 l’m afraid l had to say No & my poor arm was sore enough already, I’m pretty much down to one vein anyway!.....
It doesn't have to be Sjogrens (that has an antibody) but you can have sicca (dry) syndrome.
Personally I don't think they are all separate things necessarily - I think a/i disorders are a range of symptoms and which label you get depends on which are most obvious. Once one set of symptoms are under control - others are more obvious.
I have wondered that, the diseases do have similarities. I also suffer with a dry mouth ( only in bed at night, so it could be Amitriptyline) and dry eyes diagnosed by the optician. I am going to have a treatment from him that cleans out the eye and unblocks the tear ducts. I hope it works, it’s expensive. Done with a solution and a small soft brush. Has anyone had this procedure done? It is a blethritus treatment, excuse the spelling.
I have dry eyes and had my tear ducts plugged. Made a world of difference. I could actually feel my eyes filling with fluid. I have had dry eyes since menopause. Also have what you have but don't want to spell it out haha.
If you are positive for ANA that might be why your doctor thinks you have Sjögrens. I had a lip biopsy and eyes tests as diagnostic tools. If Sjögrens is secondary to other autoimmune conditions, they don't do much more than offer ideas for relief of dry eye mouth and eye symptoms. If more virulent, you might be put on RA drugs.
In June 2017, after years of experiencing dry eyes and reoccurring torn corneas, with dry mouth (at night), I was referred to a Rheumatologist to be tested for Sjögrens. I had lip biopsy, which showed “chronic inflammation,” but not specifically Sjögrens. My blood work was negative for Sjögrens specific tests (though, positive ANA). A little over a year later, and I’ve been diagnosed with probable Wegeners (GPA). Seems our collective autoimmune diseases overlap. As I type this, I’m reaching for my eye drops— darn eyes are so scratchy 😑
I too have the hamster look rather than moon-face with 3mg pred. Also have dry mouth and lips. I have wondered if my condition is actually PMR (diagnosed April 2018), but then I think who am I to query what the rheumatologist says. Take my meds 7am, hamster cheeks/jaw develop around 1pm and is like that until I go to bed, but when I get up in the morning my face is normal. Then the same routine starts all over again. No good asking my GP because she knows little about PMR and as she said herself "your rheumatolgist has now got it all in hand". I also have minimal pain, mainly stiffness. Tried walking (instead of buggy) for nine holes of golf on Tuesday and yesterday. Both times I was fine until I reached the 9th hole, then my whole body just seemed to seize up, it was a tremendous effort to move my legs, BUT there was no pain. Can anyone tell me if this is typical of PMR? This also happened a couple of times on long walks before I had PMR.
PMRPro do you think this fatigue is a symptom of PMR or could it be due to something else. I told my lung surgeon about it, but he didn't know. I am sitting in the hairdressers at the moment, so am finding it a bit difficult to reply properly.
There is no reason why not - I experience it too, even now.
I can remember early days deciding at the end of the third short run of the morning (skiing) that I felt really great and I was sure I could manage another one. They really were short but 3 was my limit at the start of the season. But I started off again instead of going home. About 3/4 of the way down I just sort of froze, my legs wouldn't work. There was a bench about 50m away and I managed to get to it and sat there for about 10-15min. It took me 2 or 3 attempts to get to the lift - having to stand and rest. I went home - and never tried it again!
Wow. I imagine quite frightening it happening up on the slopes. I hope you are still able to ski. A wonderful pastime and such clean air. I don't, but my three sons and their families do. My eldest son lived in Geneva for 12 years.
Since this body 'seize-up' happened once before (pre-Christmas 2017) PMR was diagnosed, and seven months after lung surgery, and 3 times since I resumed playing golf again, I was wondering if it could possibly be due to lung surgery. Never experienced it before.
The reason I am wondering, is because of the absence of pain. I think I have become a bit of a hypochondriac since lung cancer and PMR and keep thinking I have other things wrong and it isn't PMR. This evening I am going to experiment and change my pred times to 10pm instead of 6/7am to see if it gives me more stamina during the day, rather than late pm at it seems to be now, and hopefully my vision will be better too. When I get up in the morning I feel a bit stiff, but face normal, vision normal, clearer thinking etc. but after taking pred. vision clouds, a slight feeling of being unwell begins, even my gums swell a little. Thank you PMR for replying.
No - gave up skiing a few years ago for a few different reasons. Still wander up the valley on a nice day - weren't many of them last winter though! But at 850m it is still pretty clean air.
Others have tried taking pred then so the side effects happen overnight - do hope it works for you.
I suppose there could be contributary effects from the lung surgery - but honestly, it does happen even "just" with PMR. Your muscles presumably get a bit low on oxygen and high on lactic acid and give up until you listen to them.
I imagine you are right PMRpro. I did wonder about the lack of oxygen being the cause due to my lessened lung capacity, except for the fact that after lung surgery my surgeon told me to 'push' myself and do as much walking as pos. which, together with a friend, I did. Often six miles, (uphill somewhat breathless) otherwise absolutely fine and not even tired at the end, but now have discovered I can barely walk 2 miles, without seizing up. I am missing the walks very much, felt really good after them.
Try starting small and building up VERY slowly. That was what I was doing with 3 short runs - that was my base, and I added an extra run every week or so - it took from early December to January to do much more. And I couldn't do a long run for ages - not even when I could do 10 short runs one after the other. The rest on the lift was essential.Training is a very different world when you have PMR.
Thanks PMRpro, will do that - essential I think, otherwise I'll give up walking altogether. At least I can continue golf in a buggy, although I will try now and again to walk the course, or half of it at least, playing at the same time.
You must have had a lot of determination and perseverance, plus a love of skiing to do what you did.
I loved being up there - but I think I chose the right moment to say no more. There are too many tourists who aren't as aware as they should be of their limitations and ability (or lack of it!)
I have suggested a scooter between us - to share on a longer walk. Himself hasn't seen the advantage yet though.
Knowing when the time is right to give up something you enjoy takes a lot of willpower, and sadness, but if managed it is a great battle won.
I have found that if I let my O.H. think something I want is his idea, he is much more agreeable to going along with it. A scooter to share sounds a great idea, part walk, part ride, the best of both worlds!! AND, get around in the great outdoors.
This evening I should have been playing bridge at a local bridge club. The trouble is, I have found my concentration and memory is somewhat lacking since this PMR, which results in my doing stupid things when bidding, the outcome of which is myself and my bridge partner coming near enough bottom every week. I chickened out this evening, not feeling up to the effort of getting ready to go out. In fact, I have considered giving up bridge, but, I then think why should I let this PMR thing beat me and turn me into a recluse, reclusive by nature I am certainly not.
Do keep on at your O.H. for the scooter. Make him see how he will enjoy it. Another lease of life!
Looked up lactic acid. Apparently it seems it is too much lactic acid which has leaked into the bloodstream is the cause of fatigue problems, i.e. lactic acidosis. Supplements recommended are magnesium (I already take) and creatine (which is incorporated in my magnesium supplement.) And, of course drink plenty of water which I do.
Enjoyed talking to you PMRpro. Mustn't forget to take my pred. this evening, which of course will mean I have more pred in my system than I normally have.
Many years ago I could play bridge well enough to make up the 4 on the bus to the opera - but of course that didn't really give enough practice. Playing with one very good player I was fine though. But when we visited my BIL and his wife they took it all SOOOO seriously I would often be silly just to discourage them suggesting a game after dinner - which was next to as inevitable as death and taxes.
Serious being the operative word. There is no-one more serious about their game of bridge than a seasoned bridge player. Monday mornings I just play kitchen bridge with my friends from the golf club - we all went to the same classes to learn - but Friday evening bridge club is a completely different kettle of fish. Sooo, so serious!! Believe it or not, I have met more unpleasant people playing bridge than I have met in any other walk of life.
Before I began playing I always imagined it to be a social game, but by joining a bridge club I found otherwise. So, so competitive. Having said that, it can be very social if you have a four in your own home with supper or dinner.
Can't imagine playing on a bus - didn't the cards fall all over the place?
Oh I can believe it - my BIL was pretty unpleasant in his own right! They are totally cut throat in my experience! And he was convinced he was the only person in the world who got the bad cards and boy, did he make sure you heard about it!
We had a specially made (by me) bridge board, covered in baize. And always bagged the back seat and the 2 in front. It worked fine. What else do you do in a 4 hour drive to Glasgow? (It was a long time ago, doesn't take long enough now)
I must admit that when you do have a whole evening of bad hands, it can make one a bit tetchy. But, in bridge, we are always taught to be polite to one's partner, even when they let you down!!! GRRR!! Doesn't always happen though. Most bridge players insist on telling their partners what they should have or should not have done. I'm also guilty of that, but politely so.
Take my hat off to you making your own bridge table, albeit a makeshift one for a bus ride - they are generally from about £150 to buy.
I was diagnosed with Sjogren's years ago, and CREST syndrome (now renamed scleroderma), long before I developed PMR. I was told at the time that there was little to be done for Sjogren's other than to treat the symptoms - dry eyes, dry mouth, dry everything at times! Sjogren's and scleroderma are both auto immune diseases - as is PMR - and I imagine that those of us with less than perfect immune systems are prey to all sorts of AI problems, either singly or in tandem.
I have never been referred to a rheumatologist for the PMR but it is handled well by my GP, who seems to really understand and explain the disease, the steroid treatment and the way Pred affects the blood test results.
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