I am struggling with symptoms of Polymyalgia and l am hoping somebody can advise me

What you have described is very typical of PMR and its imoact on us. In the early stages when I wzd diagnosed I had to go from 20 mg to 20 mg.I was diagnosed in April,2013. Today I am at 9 mg however there are days or weeks you feel great and then you can feel terrible. Diet , and exercise help . I also take 400 mg of of tylenol each night before I go to bed and it has helped a lot with my shoulder pain plus I get a good njghts sleep. My doctor felt it was a good idea.

Hang in there. This is a great.forum and very helpful. Wonderful feedback.

As George says, this is a very typical picture in terms of the rapid relief with pred. My immediate question would be: "And what did you do as soon as you felt better? Did you rush to catch up with everything you hadn't been able to do before?" If you did - that will be why you had those bad days.

Pred has not cured anything - it is combating inflammation caused by an underlying disease process which leads to swelling and hence pain. It allows you to manage your illness until, if you are lucky, it will go into remission on its own, You are in a state of what is called "drug induced remission". Like other forms of joint or muscle inflammation it also requires some rest to allow that inflammation to heal itself and if you go out and shovel snow, dig the garden, do the housework the muscles are being worked more than they are capable of doing and they will protest. You have to accept for the moment that you have a chronic illness and you need to bear that in mind before doing things. Google "the spoon theory" and read about that side of management.

In our experience, the reduction your GP has suggested is a bit fast - don't reduce every week. The usual recommended starting dose is 15mg and that achieves remission in most patients, a few need 20mg. Some of the top people suggest 6 weeks at 15, 6 weeks at 12.5 - so on that basis you should still be OK at 17.5mg but some people are very sensitive to the reductions and develop what is called "steroid withdrawal pain" which is so similar to PMR pain you think the PMR is back. We have found that many people manage a 1mg reduction at a time - apparently much slower, yes, but also workable and if you don't end up in pain again and having to try a higher dose again it isn't slower long term. Also spend a month at each new dose before the next reduction - allow your body to settle down at each dose.

In most illnesses where pred is used to combat inflammation the cause goes away and reducing y 2.5mg at a time will work - in PMR the underlying cause can take years to decide to go away so the use of pred needs to be much longer term. What you are looking for now is a dose that controls your symptoms enough to allow a good quality of life but as low as possible - for now that may be 10mg, but it might be higher or lower for the moment. It doesn't mean you won't get lower later - but this isn't a race to get off pred.

Many people find they need to actively clear the decks before a reduction - make sure there is nothing you MUST do and that you can rest as much as possible for at least the first week. You need gentle exercise to help the stiffness and prevent muscle wasting but that is walking, gentle activities - not going to the gym! Don't commit yourself to things for a while until you find out how you react. Unfortunately pred DOESN'T take you back to where you were pre-pred and some people remain unable to do many things they did before PMR - it's upsetting and you may feel angry but the reality is that if you accept it for the moment it will improve sooner than if you waste energy fighting it. But I can only tell you that from the experiences I and many others have had - you must learn it for yourself. You still have the illness - and it will bite back if you abuse it.

George suggests paracetamol - most of us found ordinary painkillers don't do much for PMR pain. But try it and see if it works - but don't fall into the trap of using it AND pred all the time - if you need it all the time either the pred dose is too low or it is something else that may need looking at. Paracetamol used all the time can make people unwell too - just because it is OTC doesn't make an innocent bystander!

An electric blanket used in the morning BEFORE getting out of bed can help stiffness as can a shower. Keeping warm also helps the muscles not tighten up too much and get up frequently and walk around - don't sit for long periods.

Look forward to hearing from you again, Eileen

You have explained so much and in your first paragraph you are quite right l felt better and went for it. I did not have a full understanding of this disease but l am beginning to understand a lot better now. i dont like this numb, tingling in my arms and legs which has been constant since the reduction l think l may need to speak to GP and have to go back up for a while longer.

You have been a massive help to me with your explanations thankyou so much. I have not felt any benefit from paracetamol and when things were really bad over the weekend l did take a stronger pain killer which took the edge of but l dont like to do this as l have to be very careful as l had a gastric bypass just over two years ago and my stomach is very sensitive to drugs.

Thankyou once again. Very grateful

If you are on pred you should not use any NSAID (non-steroidal antiinflammatory drugs) as that increases the risk of gastric bleeding - and I can't imagine your stomach is entirely 100% after a gastric bypass! NSAIDs are aspirin, ibuprofen, naproxene and COX-ihibitors: celebrex, mobic and others). They - unfortunately are the ones that help because of their anti-inflammatory action. Paracetamol isn't as good with inflammation.

It may be something else causing the tingling and numbness and you really should ask the GP.

Eileen

The only thing I can add regarding painkillers is that, in my experience, rather than taking paracetamol or other painkillers orally to tide me over for the first couple of days after a steroid reduction, I use Biofreeze gel. I find when gently rubbed into the most painful areas, which for me is around the shoulder blades, it relieves the pain for a good couple of hours. This way, there is less, if any, interaction with steroids and the painkiller. It contains no NSAIDS, only menthol and works by cooling the inflammation.

All the best, Christine

Nice to read your replies to others, it sort of Helps knowing that you are not the only one out there suffering

from PMR. I am on 12mg now,since the weekend, I have to say, that whilst I do not have the tingling that some people have in their arms, I do find that my arms do feel heavy and my shoulders ache, and it seems to settle down a bit after 1 hr when I take the Preds in the morning with my Breakfast, then I find come the

evening, the aches, pains and stiffness are starting to return. like they are preparing themselves for the

following day.

As I have mentioned I have an appointment with the Rheum in Feb and hope that he will be able to help me

Some nights I sleep well and others not well,it seems rather odd. As for the cramping, they do arrive without notice,especially when I have been sitting for a while or sometimes they wake me up in the night, or

arrive first thing in the morning, or if I move the wrong way, but less of ithem without the diuretics

although my fingers do go into cramp also. and this is quite painful.

The point is that you also get a false sense of security when you take Preds, because they mask the pains also,and really you do not know as to how bad with the PMR you really are.

I know that Fibrymyalgia is centered at the under 60yrs but can one have both when you are my age 72

Thanks for replying

Irene/Escot.

If you follow this link you will find more links to the northeast of England PMR and GCA support site.

On that there are various items of information about PMR and GCA including other people's stories, all approved by medics as being realistic and, above all, accurate. There is a link to another forum which functions as a virtual support group - for those who don't have a local group and would like more personal contact than this (excellent) forum is able to offer. We have laughs and are totally daft now and again - but serious too. There also a DVD to purchase called "You are not alone". Knowing there are others of us in the same boat makes a big difference - comforting I suppose!

Come and have a visit :-)

Eileen