Do I have PMR or not?

I was diagnosed with GCA in April 2012 after losing sight in right eye. Started on 80mg of Prednisolone, now just down to 14mg a day. Before diagnosis of GCA by Ophthalmologist in A&E, I believe I had PMR for 18 months although this was never confirmed - inflammatory markers were checked in Oct 2010 and considered satisfactory, never checked again. I did have pains in shoulders (then attributed to frozen shoulder, and now confirmed as severe osteoarthritis, also in knee) and a lack of energy and being completely wiped out if I did too much, which was put down to age. Following diagnosis and after badgering my GP I did see a Rheumatologist a couples of months ago, who categorically told me I did not have, and have never had PMR and even if I had it would have gone by now as it only lasts some 18 months! His main aim appeared to reduce my steroids (when I saw him I was on 20mg) irrespective of the GCA. When I asked him why the lack of energy and feeling shattered when I did too much had returned, he said it was due to the steroids, and as they were reduced, those "side effects" would reduce as well! Either he doesn't understand the condition, or I don't. I can put the pains in my shoulder and knee down to osteoarthritis, but the lack of energy and feeling shattered, is that due to GCA or PMR or both. Any advice would be much appreciated.

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  • I had PMR some years ago after taking prednisolone for a year seemed to have gone ,then in June i had pain in shoulder and neck felt lacking in energy ,woke up sight had gone in right eye Dr s A/E GCA saw Rheumatologist started on 60mg at Hospital and now on 8mg also o Meththotrexate weeky said as precaution to save other eye after six months i am now feeling better i was so shattered and wanted to rest no interest in anything.Also went private had biopsy of temporal arteritis .I am feeling much better now ,i think each time i reduced medication ii had to wait for body to a just .

    Yes i still think did they get it right all happened so quick to me,but i saw all the right people and that was there answer.I would be interested how coping with one eye ,i think the shock we had ,will take some getting over ,so hope this helped .Keep in touch

  • Hi 2watsons:- You were interested in how to cope with one eye. If you care to look through the "driving" tag, you will see my experience with the DVLA. This was the greatest factor for me other than simply adapting to non-stereo vision, due to being dependant on others for lifts to hosp., etc. Once I got my ok to drive, things rapidly got better & the gradually reducing steroids are also a big bonus in that stability gets better & the side-effects lessen. Now on 2mg/day pred., so await Specialist Tests to see what the next step will be. My biopsy was done in the Eye Hospital as part of their standard routine & it was positive showing GCA for sure. It is all very hard to come to terms with, I know, but all we can do is make the best of it! Good luck with it & keep thinking positive.

    raymck

  • Hi dorset lady,Yes I was diagnosed with temporal arteritis last Feb.and put on 60 mg prednisolone for 3 weeks and hospital reduce to quickly and ended up on 30mg and still on 20mg 1 year later hoping to reduce in the next 2 weeks or so,only difference is this time it will be me that will decide how much to reduce by and believe me it will not be by much.the last 5 days have been great for me as I have been virtually pain free,hope it lasts and this would be a good time to reduce when you are feeling good.I have not been diagnosed with PMR but that does not say that I have not got it,you need to do a lot of research and talking to people on this site the more you learn about autoimmune illness the the better.Did you not get any warning signs before you lost you sight?as I had really bad headaches for 5 weeks before I went to the Docs,and she diagnosed T/A immediately thank goodness.She put me on steroids in the surgery.hope this helps.keep in touch ritter.

  • Hi DorsetLady,

    My bet is - you had and may still have PMR to some degree. Pain in one shoulder is usually diagnosed as a wrench injury. In both shoulders, that could indicate PMR. What treatment did you get? What ever it was, it did not stop you from developing GCA.

    As I was diagnosed with PMR without showing any inflammation in my bloods, I have followed the same path as a lot of other sufferers - gradual, slow reduction in dosage of steroids bringing good results in knocking back this disease, PMR. By the way, I mostly have followed my own path on dosage as certain GPs' advice led me into trouble on more than one occassion.

    PMR and GCA are closely related. I call them the 'Sisters'.

    If PMR is not recognised and treated appropriately, then there is a strong possibility that big Sister GCA can rear her ugly head. There has to be a huge increase in steroids to combat this much more serious form of the disease along with the big increase in side effects. I guess I'm not telling you anything you don't already know.

    You are now down to 14mg and feel completely burned out - well, I'm not suprised! The massive amount of pred has put your GCA to sleep and probably knocked out most of the pain of PMR, but you feel zapped. From now on, take it real easy. I could only manage drops of one mg at a time below 20mg and I held that dose for 3 weeks before going down 1mg again. The lower you drop, the harder it gets. After 10mg I could only drop by a half a mg and it has worked. I'm now on 8.5mg and feeling pretty good, but I have joint pain on and off, and I think this is a common side effect of pred.

    PMR only lasts 18 months eh! Well, that's a new one. 2 years is the general time for the illness, but that does not take into account the span of time that it takes to fire up the adrenal glands to work again, and that time cannot be predicted - we are all different. Sometimes, the steroids have to be continued at a very small dose for a number of years to make up for adrenal glands that remain underactive.

    I am into my 3rd year of PMR which, thank heavens is going into remission, but I know that I am into the hard stretch now.

    Pats.

  • Hi Pats, thanks for your answer. As PMR was not diagnosed no treatment I.e steroids were prescribed (although I did have 3 cortisone injections for a frozen shoulder!). I think now I may have had it for 18 months before GCA joined in! So in total, I have had 28 months of PMR/GCA. I know I have to take Prednisolone for at least another 15 months to preserve the sight of my other eye (as recommended by

    Ophthalmologist, who was brilliant I have to admit). As I had never heard of PMR or GCA before April last year, I find this forum invaluable, and your responses are always very informative and positive. Please also see my response to Ritter. Dorset Lady.

  • Hi Ritter. Thanks for your answer. Yes I did get symptoms of GCA, unfortunately at that time I had never heard of it, nor PMR. So when I got tender scalp, jaw ache and difficulty in eating I saw GP, and as she had been treating me for frozen shoulder for 18 months and diagnosed a trapped nerve from the shoulder I had no reason to doubt her! I still had same problems plus blurred sight 3 weeks later when I saw another GP, who came up with same diagnosis. It was only when sight became worse and I spoke to local optician two days later that he suggested I attend local hospital (it was on a weekend) when GCA was diagnosed. I am constantly being told I am atypical case - like so many on this forum! And yes I have done a lot of research since. The most frustrating thing I find is because my ESR levels are relatively low (in single figures)- except for initial 2 or 3, no one takes my fatigue as being a problem, which to me is a major bugbear. In fact it's more of a problem than the pain. Do you, or anyone else suffering from GCA alone have this problem? Cheers.

  • I only have GCA and am always tired. I can only do manual things in short bursts. If I do to much I get terrible pain in my back and it is sit down or fall down. Was diagonised last February and am now down to 9.5mg preds. Got down lower before when I was dropping by 5mg then had terrible head aches again, had to go back up from 2mg to 20mg. Am now doing what Pats did and only reducing by 1mg a month. Am still always tired some days better than others.

    Adelle

  • Hi Adelle,

    Do you remember, before you had GCA, when you felt tired out when you had done far too much work and your adrenals had had enough, so you were short on adrenalin and you felt as if you should rest? You rested until your adrenals could cope again - then off you went.

    You adrenals have gone to sleep now, therefore, you are totally relient on prednislone - the artificial form of corticosteroids. It is 4 times as powerful as the steroids we produce naturally. Just for fun, let's do the maths. Our adrenals produce between 20mg to 30mg of steroids naturally - that is equal to 5mg to 7.5mg of prednisolone. You would think that any dose of pred above this dose would see us well catered for, wouldn't you?

    Unfortunately, the body is very adaptable, and when it has been on this much higher dose of steroids for a while, say 2 months max, it gets used to the much higher dose and treats it as normal. So when we drop the dose, even by a small amount, it reacts by running out of steam and we feel tired out. We get 'burn out' because our bodies feel that we are short on adrenalin. We suffer aches and pain etc. and often feel as if PMR/GCA are coming back - the trouble is that often it is hard to tell the difference.

    I believe that the only way to go for those of us who are getting lethargy or pain or both is to drop the doses very slowly. Below 10 mg for me it was half a mg every 3 weeks and this time it has worked. The first run in was spoiled by a nasty virus and I went up to 10mg again for 5 weeks before I began to drop again.

    I am now on 8.5mg pred and feel OK, but I am having joint pain in knees - a real bummer as I'm having to cope with the stairs in a 3 storey house.

    Pats.

  • This sounds like my life without the pred. To help me, over the last ten or twelve years I have been using Turmeric daily and avoiding the nightshade plants. Nightshades, such as obergine, tomatos, capsicum etc have an alkaloid, which worsen the inflam. There is no doubt that this avoidance with the addition of turmeric is helping me keep things to a more moderate level. The joints I have it in are: ribs, hands, wrists, fingers, toes, feet, and head. With the vasculitis when in acute stress. D

  • Hi Adelle, thanks for reply.

    Glad you confirmed that you feel the same as me! As a matter of interest, do you also feel shattered if you have a big meal? I put it down to the arteries still being inflamed and the blood not getting round the system properly despite the fact that my ESR figures are relatively low (kept artificially like that by the steroids I think).

    The trouble is because you look normal, most people find it very hard to understand and sympathise with this illness we have. If we had a broken leg, they'd feel sorry for us!

    Still not to worry, keep smiling - one day things will be better!

    Dorset Lady

  • Hi DLady,

    A big meal, even for the youngest, most healthy human, means that our vital organs are working very hard to deal with the load. It is quite normal to feel sleepy after eating, so don't worry about feeling shattered, after all your body is also having to deal with powerful drugs as well. Just go with it. Eat and REST until you feel refreshed.

    Pats.

  • Hi Ladies

    I think half my problems are the fact I don't eat regularly. My average is once a day. I drink loads of coffee and lucozade. I really don't have the time I will think I am hungry do something else and then I forget to eat. When I really remember is when I get the shakes and am dizzy.

    Pats this time I am dropping slowly although I find I am really exhausted not tired as in sleepy but body feels exhausted also I ache and keep saying it is old age. As for rest well today I was supposed to be off but had to go to work due to an emergency (never ending)

    One day I keep promiswing myself I am going to switch off my phone and take a dozen books and rent a cottage in the middle of no where for a week. (bliss)

    Adelle

  • Hi Adelle,

    Please, do try to eat little and often. Once a day is not good, but I guess you realise this. You say that you drink loads of coffee and lucozade - that means that you are binging on caffeine and refined sugar. Why do you feel so tired out? - these two culprets are the main reason. Caffeine and refined sugar are hammering your sleeping adrenal glands to work, and they can't. Result, you feel completely burned out.

    Eating or drinking refined sugars can lead to diabetes and, surely you don't want that? You body can't handle sugar whilst you are on pred.

    I know how hard it must be for you as, perhaps, you are still working, but your health must come first.

    Do try to drop the coffee. I drink tea and I use Canderel to sweeten it. I've tried coffee, but I feel as if I've been poisoned. I do drink lots of water - fizzy, and I do like my glass of red wine!

    Pats.

  • Hi DorsetLady, what a great conversation you have started up! Just a thought - have you had your blood sugars tested lately? After I came off the pred I was very tired and feeling awful. It turned out I had type 2 diabetes because the steroids make the blood sugar level go up chronically and this wears out the pancreas and the adrenal system. Taking metformin for a while put me right and now I am trying very hard to control it with diet alone.

  • Hi Kate,

    Thanks for response.

    Blood sugars are okay - tested regularly. My husband is diabetic so we know the signs to look for. I think it might be as Pats suggested 3 days ago - the fact that I started on 80mg of Pred ten months ago, and am now down to 14mg, and the body is still adjusting. I have to see GP next week for next drop, so think we need to discuss tapering level - her aim is to get me down as quick as possible, after initially being very cautious. Understandable as she missed diagnosis in first place, although I have to admit she is very good now.

    I also have osteoarthritis, which, I believe also makes you feel tired. Trouble is, as you appreciate, when you have 2 or 3 different problems, it's difficult to know which one to blame!

    Find this forum invaluable - thanks for all your help and support. Dorset Lady

  • How are you bearing up with the loss of your eye. I was shocked to read this. How awful for you. I understand about the osteo, my spine in lumbar, cervical has it and can sympathise there. On feeling shattered......is that still a problem?

  • Hi daphne, see my response to your query, DL

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