53 and feeling really low with PMR

Good morning Nina from the US

I'm sorry to hear of your diagnosis like you I am much younger than the average I was 55 when I was diagnosed last fall. I too have acquired moonface I can tell from looking at pictures but being nearly paralyzed upper and lower body before I was diagnosed it is a small price to pay. If you have just recently taking yourself off Prednisone,I would highly suggest you reconsider because debilitating pain will come back at you with a vengeance if you indeed have PMR. Moonface will be the least of your worries. I'm sure you will receive the benefit of lots of experience here shortly. Take good care. Janet

What dose were you on when you decided to stop? That is never recommended unless Pred. was prescribed for a definite very limited time; you have been taking it for nine months. If you started on 20 nine months ago it may be that you have now reduced to the around 10 level that very many of us have found problematic and you just have to do some juggling.

The "growing pains" might well have indicated that the dose of Pred. you were taking was insufficient to control the inflammation and what you needed was to adjust the dose back to a level that controlled the pain and give yourself a breather before trying to resume the reduction. It really is a case of more haste, less speed.

When you reduce you need to consider that  the lower the dose the higher is the percentage  reduction if you don't adjust the size of the steps. Not more than 10% seems to be the usual recommendation. That can be achieved by buying a pill cutter as long as you are not using the coated pills or, if you are, then alternating over 48 hours to get the percentage right.

I've nagged a bit so here is something on the plus side! Your hair will grow back and the weight will slowly reduce. My problems were different.... hyper hyper and panic panic. No wonder we hate steroids but the pain isn't much fun, either.

I think if you ask for an emergency appointment you ought to be able to see someone sooner than "weeks" Our surgery keeps a proportion of appts.  for emergencies but you don't get a choice of who you see. If you say you have suddenly stopped the steroids I think you would get to see someone.  It really is not a good idea. If it's only been a couple of days I should think it would be ok to just re-start  but I'm not qualified to say.

You will find a lot of helpful sympathetic people on here so stay around and we all understand the need for a moan.

You MUST NOT JUST STOP THE PRED. You have been on a high enough dose for long enough that your adrenal glands need a taper so they can start to produce the right amount of the natural corticosteroid which is essential to life. 

If you stop the pred - even tapering it off relatively quickly which is possible - all that will happen is that the symptoms you had originally will be back. And you will be worse off than you were with the pred. You still won't be able to ride or do much else because of the pain and stiffness. Experts feel that untreated PMR is more likely to progress to GCA (giant cell arteritis) and then you will have Hobson's choice: back on the pred at a much higher dose than for PMR or risk going blind. I'm sorry to sound scaremongering, but that is the reality I'm afraid. 

The night sweats could be the pred - but they can also be due to the PMR. So could the hair loss. Or a combination of the two. The pain could well be that you were on not high enough a dose for what you were trying to do and to manage the inflammation - and then the symptoms will break through. And maybe there is something else going on making it feel worse - but that is another thing.

It is possible to lose pred-associated weight by cutting carbs drastically. Pred changes how your body processes carbs and also causes random release of glucose spikes by the liver - that triggers the release of insulin, the BS falls rapidly and overshoots and you crave food to bring it back up. The insulin causes any excess glucose to be stored as fat deposits on the face, around your midriff and at the back of your neck. I had them all - and had gained weight in the 5 years I had had PMR before it was diagnosed and I got pred. In the following 18 months I lost 35lbs by cutting carbs - it can be done.

The depression is partly due to the PMR and partly probably due to bereavement - the loss of your normal life. We have all been there but it does get better once you know how to manage it all better - that too is possible. I live a pretty well normal life even now but when I first had PMR I carried on skiing even without pred - I was only 51.

This is a link to our resources post - lots of reading and other websites that will let you learn a lot more about what you are dealing with 

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

Once you have informed yourself - come back and ask the questions you will have. Someone will do their best to help you, Where are you? In the UK?

 

A BIG Hug to you , with love and understanding. good on you for letting it out. The others know more medical details than me. A Hug and love from me