Beginning the Journey or managing my PMR - PMRGCAuk


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Beginning the Journey or managing my PMR


Female -71 years plus. I need to learn fast about PMR in order to know how to speak to my GP. How do you speak to a Doctor and explain pain that has so many variances. I was not diagnosed immediately from my symptoms because the blood test did not show I had PMR. It was presumed it was PMR and I was started on 15mg pred: and given a decreasing course down to nil over a period of 3 months. It cleared my symptoms, but by the time I'd reached 2.5mg my pains had returned. GP recommended ultrasound for diagnosis confirmation (still waiting 6 weeks later). By this time my symptoms had doubled. Because of the pain I have been restarted on the pred: at 15mg again, but this time the pain is still there. I think that I am suffering badly but these forums have given me insight into other peoples problems, and how much worse some people seem to be. If I mention how debilitated I feel, I can see the look on peoples faces, like "everybody has aches and pains - get over it". I am worried about my weight - not for looks but the extra weight on my joints, especially in bed when my own weight seems to be pressing down on my arms. How can I loose weight - even the nurse was not hopeful. If you read this, then thank you - I feel better for parting with all this baggage. Since discovering this website I will read and digest as much as possbile. NB> I read the post about ibuprofen - I was also told to avoid.

19 Replies

"I was started on 15mg pred: and given a decreasing course down to nil over a period of 3 months. It cleared my symptoms, but by the time I'd reached 2.5mg my pains had returned"

Well yes - because PMR is a chronic illness and the pred does not cure anything. It merely allows you to manage the symptoms until the underlying autoimmune disorder that causes it goes into remission and stops causing inflammation. What a shame your doctor hadn't left you at 5mg for a while since you were so lucky as to get that far!

Can I recommend this paper:

which is aimed at GPs trying to diagnose and treat PMR on their own and explains the Bristol UK group's thinking - one of the top PMR/GCA groups in the UK, active in research as well. It is fairly easy to read - you should understand quite a bit and your GP should have no problem. Unless he thinks he knows better of course! They aim for 15mg to zero over 2 YEARS! Not 3 months. Even 2 years may not be long enough. It is also common for people who are treated like this to struggle when restarted on the same dose of pred - sometimes they seem to become a bit resistant and need a slightly higher dose. Plus of course, having left it the inflammation has almost certainly spread and got worse.

You will also find a wealth of info here:

and there is an associated forum, also with a lot of info on it and which functions like a real-life support group, not just questions and answers.

Are you in the UK? I'm not sure anyone will do ultrasound to confirm a diagnosis of PMR - it certainly isn't a recognised method yet and is still really part of research since there are relatively few trained operators. It is a tricky skill.

Weight gain is a problem - I put a lot of weight on when I had untreated PMR for 5 years because I simply couldn't exercise as much. Some people have found cutting down carbohydrate a lot helps with the pred-induced weight gain - but some is fluid retention too.

CelticPMRGCAuk volunteer

Oh, Doris, it's so frustrating to hear of yet another GP who thinks that a patient with PMR can be off steroids and cured after just 3 months. There is no cure for PMR although the steroids control the inflammation that causes the symptoms/pain - PMR goes into remission when it's ready and not before. Some very lucky people do recover in 12-18 month, whereas for others it can take 2 years, and even longer for some.

Unfortunately, as you are finding, when patients come off the treatment so quickly, it is often more difficult to reduce from the same starting point the second time around and you may find that you need to remain on the starting dose for longer, at least a month, this time, and until the symptoms have abated by around 75%.

As your GP doesn't sound familiar with the need for steroids to be given for lengthy periods in the case of PMR but is rather treating you as though you have one of the other conditions for which a short burst of steroids does work (asthma for instance), then you should ask for referral to a rheumatologist.

With regard to your weight worries, cutting down on refined carbs can help to offset the steroid-induced weight gain, and diuretic foods such as asparagus, garlic, fennel and melon can help with possible steroid-induced fluid retention.

I do hope you will soon start to feel better again, and ignore those hurtful (ignorant) comments - yes "everyone has aches and pains", but if they experienced those of PMR for just one day, they would not be saying "get over it".

Doris-Hart in reply to Celtic

Thank you for your encouraging reply - I didn't know I could see a rheumatologist. I was swapped from one GP to another at my practice because he was thought to be better placed to help me - but it was originally thought it was an orthopeadic problem, and my current doctor was considered to be the best choice, but I rather think I will have to try to bridge the doctor/patient divide. Thanks for your tips on weight loss - NO MORE CHIPS!!!! and I adore melon!!! Thanks

Thanks for your reply - I am in the UK - already some really helpful info. Re - ultrasound - I think it maybe to confirm nothing else is wrong - not sure, but I will take that on board. Unfortunately my original decreasing dosage plan did not include a visit to the doctor until I was off the pred: - he said I should have gone back when the pains started, but he didn't tell me that at the beginning of the treatment!!! Have you noticed - when its suits them, Doctors tell you to read as much as possible about your ailments on the internet, but if you quote anything back to them they huff and puff. When I explained that my symptoms had got much worse, (telephone appointment only) I did mention the 2 year scenario, but got promptly told that he didn't want to keep me on steroids too long.

I must find the strength to excercise. I was a bubbly active person enjoying life and my grandchildren - now I am difficult emotionally, lazy and slovenly around the house and generally need sorting out - but I'm more likely to go to sleep or watch TV.

I am going to look at all the links - thank you and one more thing - should I consider some kind of water tablet?

Doris-Hart. Please don't be to harsh with yourself regarding feeling emotional, having no energy, and needing to sleep. Learning to live with PMR is like learning how to live with a dragon. First you have to identify the beast, then you need to figure out the rules of the relationship. The rules are: 1. Prednisone is your friend, it calms the dragon. 2. The dragon isn't going away quickly, it's just going to settle down and learn to play nicer. 3. The dragon is messy and takes your energy to deal with it.

So you need to schedule "time outs" to rest between daily activities. 4. Dragon and it's prednisone messes with you! Sometimes you feel emotional and bitchy.

5. You must learn to give yourself the same nurturing you would give your friend who was struggling with PMR.

6. This forum is a lifeline for you and your dragon. The best information is here. And 24 hour support is right here.

7. Be well, friend

PMRproAmbassador in reply to 1Purplecrow

I hope you don't mind - I've borrowed this!! :-)

1Purplecrow in reply to PMRpro

Do not mind at all, when the occasion calls for it, steal shamelessly! I have benefitted greatly from your generous advice and information, and am gratified to be able to contribute.

Lawrie in reply to 1Purplecrow

What a great way to summarize what we deal with so others can understand. I sent this to my boss so he can have a better understanding of what I go through!

Thank you!

PMRproAmbassador in reply to Doris-Hart

Silly man - none of us WANT to be on pred "too long" but he needs to understand that HE won't be dictating when you won't need pred - the PMR takes that position. I've been on pred for nearly 5 years and am only just suspecting the PMR has calmed down. That is why I recommended the paper from the Bristol group - it is aimed at people like him, it isn't just any old info "off the internet"

And it is also not a case of "I must find the strength to exercise" in PMR the muscles have developed an intolerance of exercise and take much longer to recover - a gentle walk can have a similar effect to having run a 5K race. If you can manage to get out for a walk in the fresh air every day that is good - but don't walk so far that you suffer for a couple of days. Find what you can manage OK and then build it up slowly - you can do that quite well without making things worse. The worst thing you can do is any training that involves repeats if you do go to a gym - weights and so on are good, but only light weights and not more than 5 reps at a time.

Personally, I've never come across pred patients on water tablets except when they need it for something else like blood pressure problems. They have their own problems.

Purplecrow's post is brilliant!

1Purplecrow in reply to PMRpro

Back at ya, PMRPro!

You didn't have to visit the doctor until you were off the pred! Good heavens! I am able to go and request a blood test every time I feel ready for a reduction and then see the GP to discuss the results which is as it should be. What would make your GP take this condition seriously?

trish29 in reply to Annodomini

Gosh , Good Morning Annodomini .Wow !! You have a GP in a million ..I wish I could get more help from mine with my reductions but with 10 years of PMR I have never been given many blood tests and not even when I was on Methotrexate which eventually effected my liver .. I am just getting over a nasty Flare/Virus and a Blood test was not suggested. Maybe its because I am known as Atypical but I just think they give up on me . best wishes trish29

Jenniyr in reply to trish29

My gp gets me to have a blood test every 4-6 weeks and the results are plotted on a graph and we discuss them. I think this is pretty normal.

Your GP should no have reduced your Prednisolone in the way you describe. Up your dose to a level where you you are pain free. Tell your GP where your pain is. Probably the major joints in your body. Don't be in a hurry to get off the pred. I've been on it for seven years and slowly reducing and from time to time have to increase it if there is a flare up of pain. If your GP doesn't cooperate change to a one who understands PMR.

That's so sad, trish. Self-management seems to be the key for most people and my GPs have backed me on this which has been very satisfactory. This web site has been a priceless source of information much of which I have passed on to my GPs. Maybe it also helps to have a sister who is a retired GP but, sorry, I'm not able to share her!

trish29 in reply to Annodomini

Hi Annodomini..I agree with you completely on this . I would just love to be down much further on the Pred and on the whole I have a good Rapport with my GPs and I have a good Rheumatologist as well .. I have been wondering why I wasn't getting over this Virus that I've been suffering with and today when I went to collect my prescription from the local Pharmacist we had a chat about my PMR and I told him that I had a rash with this last flare and low and behold he tells me I have been suffering with shingles and that is why my pain level is higher than normal , so its back to the GPs on Monday .. Aah well .. anything to get rid of this pain .PLEASE .Best wishes trish29 x

Hidden in reply to trish29

Hi trish29,

It might be worth your while trying to get an appt at the Out of Hours Dr to get treatment for your shingles. They could be particularly nasty because of the prednisolone, the last thing you need is to be left with a post herpetic neuralgia ( very painful ).

Best wishes


trish29 in reply to Hidden

Thank you Keyes and Annodomini for your advice .. My nice Pharmacist said Monday would be OK to get in touch with my Doctor .. He had a good look at my rash and he knows all my medication so I will see how I am in the morning .. I need to know what amount of steroid I should stay on so I need to see my usual GP. Thank you both for your support. trish29

Oh poor you trish. I have heard lots about the agony of shingles. Thank goodness you consulted the pharmacist - I agree with Keyes that you should get medical advice as soon as possible and hope it isn't too late for anti-viral medication to take effect. Thinking of you.

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