Hi I was diagnosed with PMR in Nov 17 by my GP.

Thanks Eileen. Yes I have reduced dosage, went down to 12.5 then down to 10mg but after few weeks body felt awful so Dr put me back up to 12.5. I’ve gone back to 10mg today. I’m on antidepressants & have been for past 12 months. I must admit I do wonder if it is PMR because I am not stiff in the mornings but get worse as day goes on.

A drop of 2.5 mg is quite a lot and this could be contributing to your feeling rotten.  Can you get 1 mg tablets so you could taper by no more than 1 mg at a time?  And although it's good that you have a doctor who will take PMR type symptoms seriously and not dismiss them solely on the basis of your age (under 50) I hope that he did also run the usual battery of tests to rule out other things.

Thanks for responding - my Dr has run quite a lot of blood tests. Thought initially I’d got an under active thyroid and put me on low thyroxine but not the case. My ESR level was quite high but reducing due to the steroids I guess. I now have high blood pressure. I also have high cholesterol (but Dr feels that more genetic as family history). One blood test I hear bantered about is CRP - is that right? What is that do u know? Like I said in my original post I see a Rheumatologist in March and hoping will have confirmed diagnosis and answers on improving. I used to be member of a ladies running group, ran my first 10k in Sept 2016! I was fit not exactly slim but average. My husband doesn’t know how to deal with my weight gain, which just makes me feel crap. Sorry to offload!

Hi Emma.  Sorry to hear about your troubles.  CRP is a measure of inflammation in the body so one of the tests they run to check if there is inflammation somewhere.  There are no tests specific to PMR.  

I think you should have a look at this paper, and perhaps your husband would benefit from reading it, too.  You've got a fairly serious auto immune disorder, you are in this for the long haul, and you need support.  If he wants to help maybe he can encourage you by helping to prepare low carb meals....

https://patient.info/forums/discuss/i-suddenly-felt-i-d-aged-a-paper-describing-the-effects-of-pmr-542889

The "morning stiffness" thing is a red-herring - mostly it is all-day stiffness and for some people it doesn't happen in the morning. Everyone is so different. The depression could equally well be the PMR - depressive mood is one of the listed symptoms.

As Anhaga says - smaller reductions would be an excellent idea. No drop in a taper like this should be more than 10% of the current dose - so realistically now 1mg at a time. That will help I'm sure.

CRP, like ESR, is an indicator of the presence of inflammation somewhere in the body - nothing specific, just it is there. The trick then is to identify the right cause!

I see Anhaga has given you a paper for your husband to read - it may help him understand. Do you think it is possible some of the weight gain could be due to the depression/medication? I know I put on loads of weight then - due to comfort eating, which your husband's attitude probably isn't helping with. Cutting carbs helped me lose 35lbs or so of PMR and pred associated weight - I couldn't exercise properly and didn't stop eating. Carbs are so easy when you feel ill and can't stand to cook - but most of us feel much better without carbs, never mind the weight loss we manage.

I tell my rheumie I have morning stiffness, as if I don’t she thinks I don’t have PMR!  I do wonder why I bother to go to see her. Also I see on the notes from my GP re my blood test last week, he has written Satisfactory next to my CRP. It is 28. The nurse told me that he seems really fed up, so he probably puts a Satisfactory against everyone! I was seeing the nurse to have some more blood tests because last week the hospital told them I had not given enough blood, they had had two phials full. The nurse reckons they probably dropped it or messed up somehow. I am surrounded by dummies. 

He may be fed up - and he DOES probbaly have a great deal of justification - but in classifying that sort of level of CRP as satisfactory he COULD cause someone to become very ill...

Thanks Miki. I’m on antidepressants already have been for a year. I  do like the idea of walking each day - I can walk as long as it’s slowly. I work part time so have to reserve some energy.

If you can cut down on the sugar as well as the carbs, the weight will start to drop off quite easily.  It require self discipline but well worth it.  From 16mg I could only reduce half mg monthly as I am very steroid sensitive. Some people can drop down fast and easily and others have to do it very slowly which the drs don't like.  Do hope you feel better soon.

Just to finish my message - do keep in touch and let us know how you get on . This is the forum is wonderful so please remember you are not alone.