Steroid reduction side effects

Hi,

Thank you for replying so quickly.

The first time, I was on 15 for two weeks then reduced to 12.5 the second week was really il and Dr increased back to 15 for one week only.

Then two weeks at 12.5, reduced to 10 from Sunday and feel yuk today.

It is a horrible illness, just keep thinking other people have far worse.

Still feel rubbish though.

Hope you are ok.

Hi Julia, I think you are being told to reduce much too fast. As a rule of thumb it is recommended six weeks at 15mg, six weeks at 12.5mg then it has been suggested a year on 10mg, although I don't know if most people actually stay on that dose that long. Some people find they can only reduce at 1mg a month above 10mg. I find below10mg you need to take it much more slowly, half a mg a month works well for most people although some go for one mg. The trouble is doctors seem so worried about pred side effects they try and make us reduce at a rate of knots. This can be counterproductive as you then have to go up again which can then take longer than if you took your time to start with.

Are you taking vitamin D and calcium tablets? Have you been offered a Dexascan? How often are you having blood tests? At the beginning you should have them quite often to ensure the inflammation is under control before you reduce. 

Hi,

Thank you for you're reply.

I am on 10 mg now for six weeks, then down to 9.

Just take vitamin B prescribed by doctor.

I my Consultant in 5 months time.

My blood tests are all normal and I don't show any of the raised counts for PMR.

Thankfully I have no pain, but every time I have reduced the steroids 3 or 4 days later I feel like I have been hit by a truck, the dizyness today was quite scary, I usually a controlled person and don't get phased by much.

Today I panicked.

So silly, feel a real whimper.

Hope you are ok.

Hi Julia, twenty per cent of people do not show raised blood markers at all, which can be a problem in diagnosis and proving to doctors you really are ill! I know the hit by a truck feeling, I had a rheumi who was hell bent on me reducing, but ignored me when I said I had problems. If you are taking steroids you should take vitamin D and calcium to counteract the steroid side effects and also ask for a Dexascan, it can take a while to actually get one due to waiting lists, depending where you are. Both are recommended in the guidelines for PMR. I hate to say it, but your doctor does not seem to be very au fait with PMR. In fact quite a lot seem to have that problem!

Hi

Many thanks for you're reply,

I go in waves of despair, regarding my Dr, he has said I need to be in a lower dose sooner than later or I will be on steroids for years.

I will phone him tomorrow if I still feel as awful.

Hope you are ok.

I wonder what research that comment is based on? How many people has he come across who have PMR I wonder. I am amazed at the lack of knowledge of some medically qualified people. Wait until they get PMR! 

That is so true,

his words were that he had treated hundreds of Pmr patients, Hmn, but we are all different, is what I should have said.

I have just been looking at "an autoimmune cook book " this might sound completely mad, but I still hold the view in my case this illness has something to do with food.

I am wheat intolerant, and said to my Drs months ago, before being diagnosed, I feel worse when I eat certain foods.

After today, I am open to any suggestions.

Hope you are ok

I think in my case the PMR was caused by stress. You may be interested in a couple of books on the gut and food, one is called Gut and the other is called the Diet Myth. 

Many thanks,

I will certainly have a look at those.

Hi Julia, Although I'm fairly new to this compared to most of the people on this forum, it would seem that you are being advised to reduce far too quickly. I reduced from 15mg to 12mg after 3 weeks which again is considered to be too fast. However although most of the pain and stiffness at this dose was under control, the worst thing for me was extreme fatigue and weakness. After a further 3 weeks I then reduced to 11mg and 3 weeks after that, to 10mg. which I am on currently for 6 weeks before reducing to 9mg. I do feel a little pain and stiffness first thing in the morning which usually disappears after a couple of hours, but the weakness and extreme fatigue I felt at the higher doses had virtually disappeared although I do tire easily and have to rest more often. Anyway, what I'm trying to say is, try not to be too despondent. Go back to your GP and tell him you want to reduce more slowly. Hope it works and that you start to feel better soon.

Hi,

Thank you for you're kind words and advise.

I will ring Dr tomorrow, the fatigue is very debilitating, and makes me, and I am sure all of us utterly miserable.

Tomorrow is another day as they say.

Hi,

Thank you for you reply,

the pain has gone, but is replaced by awful fatigue and feeling really ill today.

I didn't feel this bad before I was diagnosed.

I always say becareful what you wish for, after 18 mths of tests and not knowing what was causing my symptoms, I just wanted a diagnosis and a tablet to take.

Well I have what I asked for, and now moving slower than a slug and turning into a real moaned.

Hope you are ok.

I also felt much worse after my diagnosis.  Could not do much.  Update us in a week or 2.  It does get better.  Doing more stuff each day.  I am doing a healing yoga for inflammations.  It works on all the joints.  see if you can find somethign like that.  Its not like that crazy yoga. And tumeric is great for inflammations.

Thank you,

I will give it a try.

Hope you are well