Foolish action (probably)- advice needed please

Hello All

This is my second post, and I hate talking about myself, but thought I would come to you all for advice. I would much prefer to just reply to other peoples posts in a supportive way and hope therefore that this will be my last post about me!!

My first post gave background on me..summarised as having been diagnosed recently with confirmed PMR, although had the problem since Dec 2010. Have been on 40mg pred daily for some time. Had stopped or reduced steroids, on or off over time, in the forlorn hope that the PMR had gone away. Silly me, everytime I took that route the PMR came back with a vengeance.

My Rheumy has put me on a reduction plan to go from 40mg a day to 30mg a day. To then stay at 30mg until I see him in 3weeks time when he hoped to put me on to 20mg a day, where he thought that that level would be my maintenance dose. He said that he thought I would be on that level for quite some time, maybe a year or so, and then he hoped that the PMR would begin to burn itself out over time and I would be on a lower pred dose for a couple of years until the PMR went totally.(hopefully!)

Having read the many posts on this forum I quickly realised just how important it is to be on the lowest dose of pred possible. So rather foolishly maybe, or very stupidly, or downright dangerously, I gave the matter some thought about 5 or 6 days ago.

The rheumy had me on what I will call a 'top down' strategy of lowering the dose from a high 40mg to find a level that would be my maint dose. Which may well have turned out at 20mg daily. I thought that I would try the reverse of that.... I would adopt a 'bottom up' strategy and start on a low dose and flex that up over time to find a level that I could cope with body wise and hopefully would not give too many adverse side effects.

So as of 5ish days ago I started to take 5mg daily and not the 30mg I was on (prev 40mg). I felt awful with terrible virus type feelings, and of course the PMR saw its chance and came back strongly over the intervening days. Whereas though the full PMR originally was in my neck, shoulders, back, hips, thighs, and arms .... over the last couple of days or so it is mainly evident in my forearms, biceps, shoulders, and rear thighs. My forearms have been excrutiatingly painful, and I can hardly hold any weight in the arms as a consequence, even to hold a phone up is too much. And as for my rear thighs, getting out of a chair is becoming very very difficult. So it is clear to me that 5mg is no good as a maint dose for me, so I have upped that to 7.5 mg from today. My plan is to keep it at that level for 3 or 4 days and if the forearms and thighs do not improve I will keep upping by 2.5mg a day (have 5mg tabs which I cut in half) until i find the dose that works. Hopefully less than the top down route which may well have left me on 20mg for a considerable time.

I note from the many posts that it is important to get to as low a dose as poss, and this 'bottom up' approach will allow me to find that level. Obviously as I am in the fairly early days of this dreaded PMR I have to honour my body and find a dose that works. I could easily go back to 40mg which was a miracle cure for me...but I have to balance that with the side effect points and therefore find a dose that may not take away all pain etc but will at least allow me to move ok.

I tried the 5mg as a start point for my plan, based on the points made about the body producing its own 7.5mg level of cortisone.

I feel better virus wise now, so I think that I am over the worst and its now a case of finding my maint dose in a way that delivers the body benefits that I desperately need, without triggering too many side effects of the steroids.

A few questions please:

1 - When I took the 5mg of pred would my body still produce the 7.5mg naturally, meaning that I would have had in me 12.5mg... or would the body only produce the shortfall of 2.5mg. I accept my body may be producing nothing at the moment due to adrenal gland shut down. But as I used to start and stop steroids I hope mine is still working albeit intermittently!

2 - What is the sensible 'tipping point' for raising the steroid dose. Obviously as I was on the 5mg I had no choice but to raise as my forearms were terrible and my rear thighs likewise. But should i keep upping the dose until they clear fully or until they are bearable. Do I cause them long term damage if I end up on 10mg of pred and those muscles are ok but still hurt a lot but i can cope with it...or should I raise the dose until they are very alright!! I dont know if I will damage them long term if I stick on too low a dose for a year or so and the pain and stiffness is too great... versus having a higher dose with the pain much reduced, but risking greater pred side effects

3 - Is 3 or 4 days in between my 'bottom up' raising the dose ok. I knew the 5mg dose was woefully inadequate very quickly as the full force of the PMR returned. I know there can be overlap between steroid withdrawal symptoms and those of PMR..but I know the 5mg is not strong enough. I may well end up in similar position to what the rheumy feels with a 20mg maint dose, but I hope the 'bottom up' route will allow for the lowest possible dose that works to be found. I have mentally set a goal of 10mg as the maint dose which is half of that the the cons feels I may need. I know I will have some pain and stiffness at whatever level I end up on, and it is finding that balance of acceptable pain v side effects.

4 - Am I risking CGA developing by doing this 'bottom up' route and thereby allowing the PMR to gain a stronger foothold, and risk CGA starting also, due to the drive for the lowest dose of pred possible.

5 - I am going to re-start gentle walking etc (felt too bad since I dropped to 5mg, and besides was oh so depressed mentally )... and does jacuzzi type heat help at all. I cant swim sadly but if heated water would help I could do that also.

6- Is dosage affected by size etc. eg I am a 55 year old male, 6 foot 4 inches tall, weigh 15 stone (was 14 stone pre pred ), although I am still in quite good shape visually at least.... well from a distance anyway!! Would a 5mg dose for a lady for example be the same as a 10mg dose for me.

Thank you to all who read this... and I know that by doing a full u-turn from top down dosage to bottom up dosage is not a clever thing to do, aspecially in a space of a day or so. I will never repeat that and will treat the steroids with respect from now on.... though I am still amazed at the obvious problems that people experience from dropping from 5mg over many many months. I will of course honour your experiences and will tread very carefully whenever I can reach that level. I will stick to rheumy advice, and indeed all of your wonderful advice to the letter from now on.

I now ACCEPT that I have PMR, accept that the preds only treat the symptoms, accept that the PMR is not cured by preds, accept that I could have this for many years, accept that I cant self dose the steroids with what I think, accept that I must listen to the rheumy and follow his recommends, and most importantly of all, understand that there are many people out there, especially on this forum that know a million times better than me based on their own experiences, and therefore listen intently to their advice. All of these things I pledge, to my poor little body, to do.

Kind Regards (PS I am still sitting on the naughty step for self dosing!!)

Rob

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