PMR GONE.

[Bell4796]

Well after over 3 years of being on steroids then a with to Methatrexate my specialist has given me the go ahead to start from 4mill down to 0 as he believes it has gone and he has handed me back to my doctors to check me out with bloods every 6 months.I must admit i do feel better in myself even though i still have trouble with my Rheumatoid Arthritis but my bones have come back a bit as well so at least their is light at the end of the tunnel.Just get to have a knee replaced again and my right hip maybe replaced again which was due to steroids but i have got rid of the sticks for some parts of the day and that is amazing how much better i feel in myself so lets hope some of you out their start to feel better soon as well.

[PMRpro Ambassador]

It is good to hear from people getting better. But I do wonder how they can be so sure the PMR has gone without the patient being off pred altogether. A couple of ladies recently have had similar experiences. As long as the pred is there the ESR and CRP are likely to remain low.

One lady says she got up one day last year and felt "different" and has reduced down to about 3mg since then. I feel much better in myself and am now down to just below 4mg which seems to control all the stiffness still - but I'm loathe to say the PMR has gone altogether until I get to zero and it doesn't come back.

I'll keep my fingers crossed he is right - but do go very slowly at reducing the last little bit. Lots of people find 3mg tough to get past. Good luck.

[Bell4796 in reply to PMRpro]

Hi Thanks for that,i have a friend who was told it had burnt out but she still gets flashbacks so i will be watching it closely,also the GCA as i have had an attack of that .I may just get down to 1 and stay on them as i have a good doctor who will let me if needed,i also have a stash of steroids which they doubled up on so if i get a flare up i will do the same as my friend and take a few.thanks again for the comments.

[PMRpro Ambassador in reply to Bell4796]

I'm sorry to have to sound "down" but it is better to aim for that 4mg reduction with hope it will work rather than being sure. It is so disappointing when you "fail" to get off pred through no fault of your own.

A Swedish gentleman called Ragnar found that he couldn't get below 3mg despite being sure the PMR was at least almost non-existent. It was he who started the very slow reduction concept and was successful in getting off his pred 5 years ago and has had no trouble since. My version is posted all over the place here and it would be well worth going about this last 4mg using that or something similar.

And as you say - always keep a stash of enough for a few days anti-GCA just in case. I know several former GCA patients who carry 60mg with them when away from home. Check the use-by date though and make sure they are OK.

[Tobytomtom]

Hi

I have just reduced from 5 to 2.5. Not feeling very well but will persevere hearing your good news

[Jora in reply to Tobytomtom]

I would consider that a big drop, Tobytomtom. 50% in fact. I'm at 7 , coming down for the second time. I would go 5,5,5,5,5,4.5,5,5,5,5,4.5,5,5,5,4.5,5,5.5,4.5,4.5,4.5,4.5,4.5,4,5,4.,4.5,4.5,4.5 ,4.5,4.5,4,

That's rather hard to read,! Basically, one phases in the new dose by alternating with the old dose at reducing intervals. That gives your adrenal glands a chance to wake u agan. I fond it SO much easier than a straight drop. ,hope that helps.

[PMRpro Ambassador in reply to Tobytomtom]

A basic rule of thumb that has been in the medical literature for a very long time is that no reduction in PMR should be more than 10% of your current dose. From 5 to 2.5 is 50%. Whilst in other illnesses where pred is used short term such large step drops may work there are 3 things to bear in mind in PMR.

One is that you have been on pred for a long time, your body has to learn to produce its natural steroid, cortisol, once again since the adrenal glands don't produce it as long as there is more than about 7mg of pred in the system. It isn't that the adrenal glands stop working - the problem is in the very complex feedback system governing the production of a whole range of hormones and they take a while to settle down, sometimes up to a year or more. That in itself can make you feel ill as your body is starved of enough corticosteroid and taken too far can cause an adrenal crisis - and that can make you very ill, A&E in an ambulance ill on occasions.

The other is that you are NOT necessarily aiming for zero in this reduction. You are looking for the lowest dose that will control the inflammation that causes the pain and stiffness of PMR. You were OK at 5mg - you might well be OK at 4 or 3 mg - but maybe not at 2.5. Overshooting the right dose will allow the inflammation to start up again and you will end up in a flare, needing to go back to a higher dose and having to start over again.

The third is something that applies from the start of the reduction in fact. Your body has got used to higher levels of corticosteroid - not addicted but dependent. Take the pred away in too big a step and your body will resent it and let you know by feeling ill. The symptoms often resemble the symptoms of whatever illness you taking the pred for. So in PMR you wouldn't know whether your symptoms were from a flare or steroid withdrawal. You can avoid this problem by reducing in very small steps.

I can't reduce overnight in even 1mg steps without problems - which is why I worked out a very slow reduction programme which has been posted all over the place on here and Jora has written it out in figures here.

If you feel ill DON'T tough it out - you could end up in trouble.

[Bell4796]

Hi Tobytomtom,how are you doing this,i went 5 one day 4 another for a month the 4 and 3 ect and thats the best way when getting to the lower end,have a word with your doc if not well and do try it that way,hope your better soon.