And on it goes

[Visby]

I have been treated for pmr for 7 years now many ups and down during that time developed type 2 diabetes I also have copd and osteoarthritis, big flare up last November and put on 20 mg pred dropped to 15 mg after a month but since then have not been to good spoke to my gp I now also have Cushings so gp referring me to a new rheumy ( had a very bad experience with the last one a few years ago) so have just been under the gp care I have dropped to 10 mg pred now as I was concerned about cushings so seeing how I go and will try to drop very slowly to my 5 mg indefinite dose

[SnazzyD]

Hello, not surprised you’re feeling the Cushings there. When you say you've not been too good, how do you mean? Have you adjusted your diet in any way?

[Visby in reply to SnazzyD]

Hi I’ve had the usual pmr problems with pain in hips upper arm etc but have had really chronic tiredness drags youight down

[PMRpro Ambassador in reply to Visby]

That is part of the autoimmune part of the PMR - fatigue is a massive problem with almost all autoimmune disease.

[PMRpro Ambassador]

You don't really have Cushings syndrome, the Cushingoid appearance is due to the fact you have been on a dose of pred that is much higher than the body's normal level of corticosteroid and it is the excess steroid that causes it so they know WHY. Cushing's syndrome is when you have the same symptoms for no apparent reason - and then the excess steroid is possibly from a tumour somewhere in the group of organs that form what is called the HPA axis, the hypothalamus, pituitary or adrenal glands and that must be identified and dealt with to cure it. It isn't nice - but it is known why you have the symptoms.

I also had it several years ago - I had been on prednisolone when I lived in the UK but I was here in Italy when I had a dodgy batch of the prednisolone I had with me. Prednisolone isn't used here, my region usually used methyl prednisolone so I was switched to that - and within a few months I had developed all the signs of Cushings, massive weight gain in the usual places, moonface, hair went mad etc. And I felt awful! I had never had any problems with prednisolone and my GP decided to try a form of prednisone that is available here. I immediately was able to drop the dose and started to lose the weight - I also went on a very low carb diet. Over the following 18 months I lost 35lbs of PMR and steroid fat and the steroid myopathy I had developed on the methyl pred also resolved - just by walking. The moonface went as did the midriff fat, I had a waist again. I have never had any problems with this form of pred either. Cushings was on my list of diagnoses at the hospital for some time - no longer.

Is the 10mg managing the PMR symptoms? If so, that is fine. But don't try to tough it out or you will end up back where you were in November. There is obviously one form of PMR that is described as refractory or relapsing - it lasts a lot longer than they usually expect and patients rarely get off pred altogether between having relapses of the starting symptoms - and requiring higher doses of pred. As you get to below about 7mg pred the symptoms will start to resolve - and you can help them too. Many of the adverse effects of corticosteroids can be managed or avoided altogether when you know how.

As Snazzy says - what do you mean by feeling not too good? At what dose? Have you changed anything about lifestyle? And above all - diet?

The best way to deal with the Cushingoid weight gain with pred is to be really conscientious with a low carb diet. Cut out all processed carbs in particular and all added sugar. And then have a look at this site which is all about low carb and keto. You will find achieving ketosis very difficult when on pred because it makes the liver release random spikes of glucose from the body stores and that keeps the body out of ketosis but some of us need a very low amount of carbs to be able to lose weight, Snazzy and I amongst them!

dietdoctor.com/low-carb

Don't worry - it will all turn round, I'm overweight still (not really, my line is I'm just undertall, if I had longer legs I'd be fine ) but you wouldn't know I was on such a high dose of pred as I am.

[Visby in reply to PMRpro]

Thankyou the Gp did say it was my body producing too much cortisol, for a long time I was pooling along on 5 mg pred. Had a few flares and upped dose then back down to 5 mg which seemed to be the stay at dose for me tried to go lower many times but didn’t work out , when the gp put me on 20 mg in November my blood results went up to 60 I had been feeling very tired and painful struggling quite a bit also my other health issues don’t help it was great for a month I could take on the world so dropped-to 15 mg since then very lethargic painful hips arm and neck area generally feeling unwell then noticed this large hump on the upper back I could tell my face had gone Mooney and piled on the weight very quickly ( I wasn’t small to start with ) but this was a very fast big gain I will try my hardest to adjust my diet and try to get rid of some weight unfortunately I struggle with walking as I have osteoarthritis in my left foot which swells up when I walk on it too far I still live in hopes that i will one day get my life back 😊

[PMRpro Ambassador in reply to Visby]

Your BODY isn't PRODUCING too much corticosteroid - you are FEEDING it too much as the management of the PMR. Totally different scenario even if the result is similar. If that is the sum of his knowledge about Cushings and long term pred management, I'm concerned.

With low carb the exercise bit is less important - for at least the first half of my weight loss I could hardly walk - achilles problem and I was using crutches for months. You could probably use a mini-ergonometer cycle like this which would help leg muscle strength without weightbearing on your feet.

amazon.it/Ultrasport-Traine...

But you DO have to be good about the carbs for success and it isn't usually a speedy answer. I'm pretty sure there is a section on diet in the FAQs now - including MrsNails story which really is inspirational! She used the NHS pre-diabetes support I think, and lost weight quite fast for someone on pred,

[Visby in reply to PMRpro]

Thankyou the little machine looks quite good and I will endeavour to get to grips with the diet 😊