How to get from 1mg to 0 pred

[Sydney0503]

I was diagnosed with PMR in Oct 20 on 15mg and in April 21 told it was highly unlikely I ever had PMR and just needed to now getting off steroids . At that point I was on 9mg and got down to 3 mg pretty easily by Sept ish using DSNS . Below that has been hard but now finally trying to get from 1mg to 0 . I also started HRT in January as dr thought that could also be contributing to my aches . It helped a bit but not much . In the last month , I’ve had severe back paint and seeing an Osteopath , feeling really pants and low . I am looking for tips in getting off which is my goal and wonder if it will pass given they don’t think I had pmr in the first place and it’s just steroid withdrawal ? How do you know when your adrenals are working again ? Thanks for any help . Ps I also take magnesium

[SheffieldJane]

An Endocrinologist would be good at this stage. You can have a Synacthen Test to measure your Adrenals for the potential to work normally. They would also have proper insights into the inpact of HRT. I would ask to be referred. Good luck!

[Hidden in reply to SheffieldJane]

Morning, you'll soon know once you're off Prednisone. The pain will return if it is PMR. Mine started in Dec 2019 and now in my third year. Pain in shoulders, hips, knees and even buttocks were my original symptoms. I've used the Very Slow taper too, but still experienced problems once down to 6.5mg. Now staying on each mg for a month in the hope I too will one day manage to be off them for good. No cure, just remission.

Good Luck

[PMRpro Ambassador]

WHY do the say it wasn't PMR? If it wasn't - what was it that caused the symptoms that were obviously PMR_like enough to get the diagnosis?You have my sympathy - my back is giving me gyp at present!!

[Bailybiscuit]

I was diagnosed with PMR in 2014 and then saw several rheumatologists who have added other conditions, some saying I don't have PMR, but others think I do. I had a synacthen test which showed I was borderline so could reduce as I had been the dead slow method. Each time I got to 4 mg I started getting pain in my shoulders. I would go up a bit and it improved. Now I have given up and stay on 4 mg Pred. My rheumatologist doesn't seem concerned. I think it is ok to stay on 5 or less, I hope so as no one has said to reduce further!

[PMRpro Ambassador in reply to Bailybiscuit]

You aren't heading relentlessly to zero - you are looking for the lowest effective dose. When symptoms reappear at a similar dose more than once it is your body sending you a message - you have arrived. For now. Adrenal insufficiency can lead to similar symptoms so sticking at the low dose for a few months MAY allow adrenal function to improve OR the PMR activity to die down further, And then you will get lower. But you are what you aim for and hope to achieve: a low dose of pred.

[Bailybiscuit in reply to PMRpro]

Yes that is why I am staying on 4 mg. It might be that I don't have PMR as I was A typical but my mother had it plus Giant cell arteritis.

[Hidden]

Your story so far is very similar to mine.Have you had a check to see if your pituitary is functioning correctly?

My problem turned out to be a pituitary adenoma (benign).

This caused zero cortisol, zero testosterone and close to zero thyroxine in my system. Replacing the cortisol with high doses of steroid masked the problem until I reduced to below about 3mg when all the aches and pains began to return and at 1mg were unbearable.

Make sure you get it checked out, especially if you have a lack of or low TSH

[PMRpro Ambassador in reply to Hidden]

Who took you seriously and identified it? Most GPs seem unable to see beyond cortisol and adrenals, maybe they don't cover the HPA axis in physiology at medical school ...

[Hidden in reply to PMRpro]

No one took me seriously! I live in Cyprus and from time to time the government run health initiatives and offer either free or subsidised screening of various health problems.One of these popped up offering very cheap Thyroid function testing. Both myself and my wife took advantage and my numbers were skewed.

I know a very good GP ( called PD's here, Personal Doctor) so spoke to him and it was him that started the ball rolling as it were.

After ultra sound exams and various tests and an MRI scan the problem was diagnosed.

I saw an excellent neuro surgeon and after 2 attempts as the adenoma was so large, he removed the adenoma, trans Sphenoidally.

I still have to take steroids or hydrocortisone of some type but only as a replacement for the cortisol that my body no longer produces but I'm sure I don't need to tell you about Addison's Syndrome. I also take T4 and use a testosterone replacement as my pituitary function is all but non existent.

[9lives]

Hi I was diagnosed in June 2016 and started on 20 mg then reduced to 15 mg . I’m now down to 1 mg and a bit reluctant to reduce down further as want to ensure I don’t have symptoms return. it’s been a long slog but I’d rather be slow and sure than quick and flare up.

You have managed to reduce rather quickly than some, so that’s a good thing but you need to ensure that you take enough pred to mop up the inflammation otherwise you will flare up again.

The aim is to reduce as slowly as you can and not try to get to zero quickly otherwise you will end up in a yo-yo situation where you will have to increase your dose etc. and then reduce again and so on xx

hope this helps. And good luck x