Newly diagnosed with PMR

[Carolpolla]

I just found out yesterday I have pmr after visiting my gp three times in last few weeks and being given strong pain killers. I started on 15mg prednisalone yesterday and almost straight away felt better. I am 57 and still working as a carer but would like some advice about what to expect. Do I need to pace myself? Is this feeling of feeling better going to last? Is physical work ok or is that going to cause problems? I am off sick at moment but am a bit anxious about the immediate future. Any advice would be appreciated. Also does anyone know if there is a support group in Northampton. Thanks

[PMRpro Ambassador]

You will find the support groups allied to PMRGCAUK listed here:

pmrgca.co.uk/groups/

Peterborough or Cambridge are probably the nearest to you.

Yes, you will have to pace yourself - rest is the other half of managing PMR. Pred manages the pain and stiffness by reducing the inflammation that causes them but the pred does not do anything about the underlying autoimmune disorder that causes the damage and autoimmune disorders are commonly associated with fatigue.

As long as you are taking enough pred to manage the symptoms you will feel much better, if you reduce too far or too fast they will come back. When you start to reduce after about 6 weeks, it should be very slowly and in small steps because what you are looking for is the lowest dose that will manage the symptoms - and that is NOT likely to be zero straight away. Reducing more than 1mg at a time is fraught with risks so do try to resist your doctor trying to force you to reduce too fast. There are slow reduction schemes available.

There are people who have continued to work - those of us who didn't have to are amazed at what they manage! I worked but it was sitting at my computer at home - I'm a freelance translator so didn't have to make it to work for a given time. Now I could work probably and I am still on pred - but I had 5 years with no pred and have had some rather rocky paths over the past 3 years!

I think it is fair to say if you work you will probably need some adaptations and almost certainly a higher dose of pred than if you don't. Runrig on here continued to work as a nurse with gCA but GCA doesn't always come accompanied by PMR and I can't remember if she had bad PMR or not.

It will very much depend what you have to do as a carer - you will find lifting quite difficult I would think (I did). It is not so much lack of strength as a body that just doesn't appear to want to what you want it to do - quite difficult to put into words! Most of us also find it next to impossible to do anything quickly - I'm getting there but other people still move faster than I can!

This site has some stories from patients - not sure if there is one from someone who continued to work. There are also some articles in their newsletters with tips and tricks for managing life with PMR

pmr-gca-northeast.org.uk/

[DorsetLady PMRGCAuk volunteer]

Hi Carolpolla,

Welcome to this site and PMR!

PMRpro has given you a very comprehensive reply - as always.

I'm sure once you've had chance to digest things you will have a lot more questions. Feel free to ask away, even if they seem trivial. Whatever you encounter, there will be somebody who has been through it and can help you.

The most important things are, to pace yourself (not easy if you care for somebody), to rest as much as you can, to reduce steroids slowly, and keep your sense of humour - it will be sorely tried at times! Good luck, DL

[PamOakes in reply to DorsetLady]

Hi there & welcome!

I too am in my mid 50's (54) & a care assistant with pmr (diagnosed in feb) like you the immediate relief from pred, having battled with the extreme pain & stiffness for weeks, made me feel euphoric! I now know that fatigue is a major battle along with the sweating, but like others have said, the body just doesn't conform sometimes to work like you want it to. It takes longer to do everything & then you're just shattered. I was started on 20mg a day & I'm down to 15 now & due to drop to 13.5mg next week (having worked 38hours of nights this week I am very achy in the thighs & hips so may leave the drop for another week)

I wish you all the very best with your 'journey'........ask all of your questions on here where you will find amazing support & knowledge.........if support is offered at home then grab it with both hands & try to be kind to yourself (one area I'm lacking in)

I shall follow your posts with interest to see how you get on.

Good luck!

[67gpbzoo in reply to DorsetLady]

Hi I was diagnosed with PMR in April this year. Due to the quick reaction of my GP I was admitted to hospital. After various tests I was told I had possible PMR.

I am due to reduce my Pred's down to 5mg, from 20mg back in April, these have been reduced slowly.

I lost my husband 12 months ago in a tragic accident, the GP is convinced this is what brought on the PMR.

The one thing I really don't like is the weight gain - especially in this weather. How quickly will it go? Also the awful tiredness?

It is really great to know there is help tho - and I thank you for any helpful advice. Judy

[DorsetLady PMRGCAuk volunteer in reply to 67gpbzoo]

Hi 67gpbzoo,

So sorry to hear about your husband, you must be bereft. I lost mine 3 years ago, but it was expected and I know how I felt, it must be much worse for you. Yes quite likely the shock and stress brought on PMR, I was a carer for my hubby and sure that had some influence.

Are you now just going down to 5mg? If so, from what?

You need to remember that the lower you get, the bigger the percentage drop becomes, and it is recommended that you don't drop more than 10% at a time. That obviously becomes more difficult the lower you get, and at really low doses virtually impossible, but hopefully by then the PMR will be on the wane. That's another reason why we advocate a slow reduction plan that takes weeks rather than an overnight drop. You body doesn't seem to notice what you're doing then.

As for the weight gain, most people lose it at lower doses, almost as quickly as it went on, but trying to stick to healthy eating, low carbs etc does help. The Pred does seem to redistribute the weight around certain areas!

Fatigue could be many things, the PMR itself, a side effect of the Pred, or certainly at around 5,6,7mg your adrenal glands being a bit slow at kicking back in. High doses of Pred supresses them, so sometimes they need a lot of encouragement to get going again.

[67gpbzoo in reply to DorsetLady]

Very many thanks for you quick reply Dorsetlady. Sorry to hear you have also lost your hubby. I do miss my Johnnie.

Having PME does change our way of life - somewhat. I am trying to rest as I realise it does make me tired. Any tips or diet, excercise would be helpful.

Many thanks Judy

[PMRpro Ambassador in reply to 67gpbzoo]

I can only add to DL's recommendation of lower carbs! I gained a lot of weight on Medrol, the form of corticosteroid which is used here in Italy. Previously on prednisolone in the UK I had not gained any more weight than that I had put on in the 5 years I had undiagnosed PMR and was relatively inactive as a result although it had redistributed to the usual places. When I was switched to another CS I started the task of trying to lose the approximately 40lbs I really didn't want or need. I started with the 5:2 diet which helped readjust my portion sizes and allowed me not to be hungry on less and then went over to low carb. Over a period of about 2 years I lost 36lbs. This summer I have regained about 6lbs - because I have been away a lot and unable to dictate what I eat (I haven't cooked a meal in the last month!). As a result I've eaten more carbs than I know are good for me as well as having been on a higher dose of pred because of a flare! Now back home and back to normal eating - so I do hope this weight goes!

[DorsetLady PMRGCAuk volunteer in reply to 67gpbzoo]

PMRpro has given good advice re carbs. Really think it's just eating sensibly, and not allowing the Pred side effect of added hunger to take hold. Very difficult at times. Plus after bereavement I think some people comfort eat, or go the other way and don't eat properly at all. I know from personal experience that a meal shared with family or friends is enjoyed much more than cooking for one. But I have made a conscious effort to prepare a "good" meal most days.

Lots of people take up Tai Chi, Yoga, or join a walking group - I've taken up Pilates - easier for me as I have arthritic knee. But any gentle exercise is good, not too repetitive or strenuous.

Take care.

[sealine30]

I was diagnosed in January 15 at 49 years old and have been off work since December. Now feeling like I am ready to try a phased return very soon. Used to work full time in an IT role but initially found the repetetive keyboard work and driving to and from work very painful indeed in my upper arms and shoulders. Still on 15 mg pred and psyching myself up for the next drop, but notice now that if I drive anywhere for over an hour or so, i suffer with a treacle day the following day and power nap if i sit still for too long. Good luck on your journey.

[pmrdec112014]

Hi there Carolpolla.....Sorry to hear you have become afflicted with PMR. I was diagnosed in Dec 2014 so I am still getting to grips with it all!! I had 10 weeks off work and went back on 19th Jan 2015. I did a phased return for 2 weeks but now I just have an arrangement that if I need to go early I go. I desperately try and manage if I have work booked in in my diary and then "collapse" when I am catching up in the office. The fatigue is still a serious problem and there have been weeks when I do nothing much at home after work just to be able to work again the next day. I also don't seem to be having a lot of luck in reducing the steroids and am still on 15 mgs since I was diagnosed. What I have learnt from this forum though is there is always someone who will answer your queries however trivial you think they maybe. Go slow in reduction of steroids ( hopefully not as slow as me!!!) Listen to your body and if you need to rest..REST! I think that now that spring is here and summer is on the way I can feel the dark days of the past few months are leaving!

Oh and I am still trying to work out whether its better to have pmr when you are younger and possibly fitter but still having to work ( I am 51) or when you are older but probably got more ailments but have the luxury of not being controlled by the time due to work???!!! Best wishes for your journey and a smooth one at that!x

[PMRpro Ambassador in reply to pmrdec112014]

Don't know the answer to that - I was 51, nearly 52 when it started and working freelance as a translator. Over 10 years later I still have PMR, am still on pred but only 4mg and can do about the same as then except without pain now! I had 5 years no pred, and then 3 years of pred with some other complications in the middle - but for the last nearly 3 years have steadily improved having worked out that most reduction schemes are fare too fast. Now I never reduce more than 1mg at a time and take up to about 6 weeks to do it using this scheme

healthunlocked.com/pmrgcauk...

A similar one is in use by a consultant in the north of England, another suggests something similar below 10mg - but we think there are many patients who can't reduce even 1mg at a time without withdrawal problems even at higher PMR doses. You can't tell which is withdrawal and which is PMR returning as the dose is too low. This fools your body! This version is being studied by one of the UK research teams.

[Charlie1boy]

Hi!

I'm three months in front of you, and can identify with almost all that has been said, especially about having to pace yourself. If you follow this forum every day, you will learn a huge amount about how to manage your PMR. We all seem to suffer a bit differently, but the more you read, the more you learn.

I certainly suffer from what Sealine describes as a "treacle" day. To me, that is my body telling me I have overdone things, so try to take it easy

Good luck!

[poppetpain]

Hi. I was put on 15mg pred last December and am now down to 10mg but I have done it slowly by doing alternate days of each dose till I felt good then went on to lower dose. I will use the slow reducing plan that is on this forum to go lower but I'm going to stay on 10mg for at least 3 months and be patient. I too have a fuller face but that's no problem. I was taking the pred at 2am so that it was in my system before 4am when its thought the inflammation kicks in but am now taking it before bed (11pm ish) with a snack and I seem to be OK still. When I took it in the morning I was stiff for at least another 3 hours before it kicked in so that was no use to me. I am 67 years young and have given up my twice a week table tennis and badminton as well as long walks. Yes it is easier not having to be up and out for work every day and I really feel for those of you who have this added pressure. I am so glad that I have PMR though rather than Fibromyalgia as at least I can take a medicine that helps me 90% of the time to live a normal life if not as active. Chin up and keep reading the forums as they have helped me so much. Hugs from Mary, Liverpool.

[Daisyharper]

Hi

Welcome to this wonderful forum, I was diagnosed last Sept, got down to 9mg then had a flare up, back to 10mg, doing ok at the moment, I am going to try and stay on 10mg for a few months. I haven't had hardly any time off work with PMR although I had a muscle spasm in my shoulder, unrelated they said......I have however had a couple of sickness bugs, which I have never suffered before in my life, I am 60 and still working three days a week which suits me fine. Good luck, keep reading

[PMRpro Ambassador in reply to Daisyharper]

There are orthopaedic experts and rheumatologists who would disagree - they have found that certain shoulder problems are more common amongst PMR patients. One from southern Germany who is doing research into the cytokine-filled knots in muscle that are found in myofascial pain syndrome feels the are the same cytokines that cause the stiffness and inflammation in PMR, just all in one place not all over the body. If you deal with them separately you get away with less oral pred - that was what happened for me. Dealing with my horrendous low back pain as MPS has improved the PMR no end.

[Daisyharper in reply to PMRpro]

Thanks PMR pro as usual you are very well informed, I went to a private physio and had two treatments of ultrasound, it was like a magic wand, so fingers crossed I won't get it again, but I will be back to the physio if it does.