Foolish action (probably)- advice needed please
Posted , 8 users are following.
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
0 likes, 47 replies
fiftiesgirl
Posted
Be kind to yourself...... try to get your head around this damned PMR which has such an impact on our lives and wellbeing........ take things slowly and rest and take some gentle exercise to keep your muscles in as good a condition as possible given what happens to them with steroids :roll: Give yourself little treats and things to look forward to.....
Slow down your reductions..... rushing to get off them will only cause more problems in the long run.....after all, when PMR has done its worst and finally taken itself off,( hopefully!) you want to be able to permamently see the back of it.... not for it to re-occur!!
A year into my journey and a long way to go but not rushing now..... taking everything slowly and carefully because I want to be able to wave bye bye to PMR at the end of the journey...... you too I am sure :P
Take care :P
Mrs_G
Posted
Do let us know how you are and I do hope things have improved
Mrs G
rjw
Posted
Thank you for your continued good advice and good wishes...it means oh so much. I did try to post over the weekend and on Monday morning, but I could not connect to the web site..upgrades at their end I expect.
I am feeling very tender physically and mentally, but better than I was thank you. I am listening to my body and taking it very easy. I think my body is trying now to adjust to the 20mg dose...and the consistency thereof!!
I feel less pain and stiffness in most of the normal places which is good, but my forearms, biceps, shoulders and rear thighs..just wont accept that they have to behave with the 20mg dose. All of those areas were good on the 40mg dose but do not seem to respond too well to the lower 20mg dose. I hope those ares will settle too soon. I see the rheumy in 2 weeks and hope by then all is more settled. I certainly do not want to up the dose when I see him so hopefully all of those 'offending' areas will respond soon. Obviously as you all know anyway, they are much worse first thing in the morning and after any lengthy period of sitting.
As for my mentally low feeling...I dont know if that is now steroid related or PMR related...either way... I hope I feel more mentally happy soon. (Happiness....mmmm...must look that one up...cant say I remember that feeling!).
Oh well enough of my inner thoughts and reflections...sorry to burden you with those..I will try to perk up.. i promise.
Hope you are all stepping along your own 'roads to recovery'.
Loving tender hugs to all those on this forum
Rob
EileenH
Posted
You could try splitting the pred dose so you take say 5mg in the evening and this might help with the morning stiffness - it is recommended by some rheumys but some people find it affects their sleep. Worth a go though. On the lower dose you will find more restriction in what you can get away with - any of us would take life with a higher steroid dose if it didn't come with the caveat of the side-effects attached! Some of it is also probably your body getting used to a considerably lower dose than you had been on before the roller coaster.
The low mood is partly PMR (one of the symptoms) and partly steroids (one of the side effects is mood swings). Add to that you have found the hard way that this isn't going to be a simple \"take the meds for x weeks and you'll be fine\" recovery. Learning to deal with a chronic incurable ailment that can only be managed until it decides to go away is a new challenge for you and one over which you have no control - another new feeling. You have to find a way to appreciate what you CAN still do, find new challenges that satisfy your mind - don't mourn what is lost for the moment. It will come back, albeit possiby in another form.
And do stop feeling we are burdened by your thoughts :roll: :wink: One of the things they are achieving is to show any other new visitors that they are not alone in feeling this way. It has been said that we all sound so positive. And that can be a put off to some visitors - \"Oh they are all doing fine, they're managing so much better than me. It must be me\" - believe me, we weren't always! So in that way you are already contributing here in a positive way. Remember - if we find anything too much, we can step back, unlike a face-to-face situation, and return when we feel able - or not.
Business life is relatively easy in some ways - very disciplined, ordered. Life with PMR isn't! Steep learning curves are difficult for anyone! Steep anything is difficult in PMR :lol:
Eileen
mrs_k
Posted
You might like to have a look at pmrandgca.forumup.co.uk - its new and is run by the PMR GCA UK - a new national charity.
It is different to this one, but this is one has been our saviour over the past years.
MrsO-UK_Surrey
Posted
I sense a little bit of positivity coming through in your latest post - good, and excellent to hear that you are taking it easy!
It will take some time for your body to adjust on the 20mgs but as steroids are not a cure, unfortunately you will still feel the discomfort in the areas you mention. It was many many months and well into the lower doses before I got to the stage where I could stand up from a chair and feel as though my legs were a part of my body! Some lucky people seem to reach a stage during their treatment where they become pain-free throughout the rest of their PMR journey but that certainly didn't apply to me. :roll: Let's hope you're one of those \"lucky\" ones! :ok:
MrsO
Mrs_G
Posted
Glad to hear you feel a tiny bit better I hope the 20mg does do it for you Certainly some people on here have found that their initial high dose hits in straight away but with others it does take a while
I hope this dose do it for you but keep an open mind if your Rheumy wants you on a higher dose We all want to be pain free and Drs never want you on high doses for very long My Dr is of the opinion that you have to hit it hard at the start If you are pain free it will certainly lift your mood and mean you can do more !!
Very best wishes and as Eileen says we have all been at that stage you are at now so come and whinge as much as you like we all do !!
Mrs G
Dublin,_Ireland
Posted
Having just had to go back to 40mgs of steroids, from my lowest of 10. I can honestly say that it is worth it in the short term :wink: .
I was in a lot of pain in my wrists and knees and pretty immobile last week as I have PMR and Rheumatoid Arhtritis, but the higher dose, which I will be reducing later this week, has enabled me to function again.
I know how frustrating it is to seem to be regressing, but if the alternative is pain and incapacity, then I will take the higher dose steroids any day :roll: .
Very best wishes,
Pauline.
BettyE
Posted
Rob. glad you are on an upward path at the moment and feeling a bit better.
One of the really difficult things about our condition is the lack of predictability. Oh for a \" take the meds for six weeks and you'll be fine\".,as Eileen says, wouldn't we all love one like that.
I find and I'm sure I'm not alone. that, not only to I vary from day to day but from hour to hour and at different hours on different days and it's hard to connect anything to anything.
I am one of those who takes my Pred. at night ( GP's suggestion ). I have had no problem with sleep and it has macde all the difference to how I feel generally but it's horses for courses.
Read some of the back stories on here if you have time and I guarantee there will be very few experiences you have that will not ring a bell with somewhere. That's one of the best things about a forum and makes up for all the abuses of the internet.
MrsO-UK_Surrey
Posted
Mrs_G
Posted
I will join in here !
Between my two boutsd I would say I went back to normal The year it came back I had a feeling in the March after we had been to Sorrento for my 60th and climbed Vesuvius !! ( a dream now !! ) walked round Pompeii etc a bit of arm ache only and this disappeared and then when we went to Venice in the September ( My husbands 60th ) I had stiff legs but obviously tons of walking and it came back in the September
I remember the first bout of PMR with having a very strange walking motion when I got up before i was on the steroids !! I certainly hated getting up in a Restaurant and waddling off between the tables !!
My journey to 3.5 seems to be going OK at present but as Ive been there before I wont get too excited !!
Mrs G
MrsO-UK_Surrey
Posted
I'm glad you joined in as I was interestested to hear how people like you and Betty felt in the intervening years between the bouts. It's good to hear that your legs felt completely normal and you obviously didn't suffer from the ongoing stiffness that a couple of other people I've met have experienced. I'm a little bit disappointed at the moment that being on half a mg I'm still managing to find that if I walk up little hills and climb a number of steps I end up in a spot of pain at the top of my legs, well one leg is worse than the other at the moment. After your experience of PMR returning after all that exercise and climbing you did, then it would seem that too much exercise is not to be recommended even after recovery!
I hope you stay well on the 3.5 this time - no climbing any more mountains now! :wink:
MrsO
Mrs_G
Posted
I have said if I recover from this bout of PMR I will become a complete hypocondriac and wrap myself in cotton wool !!
The problem is if you feel back to normal you act as you did before !! I think a lot of people who have instant relief with their steroids do this as I and I know a lot of others were hyper with energy at the start !
Perhaps your muscles ache because you havent used them as much of late and it will take a while to build up I have been doing my Nordic walking since January now and I can definately walk faster now and dont really get much in the way of extra aches after it wheras at the beginning I was quite tired after it I dont think I will ever be doing full press ups again or the plank !! but I do want to keep as mobile as possible and my exercise class on a Monday is gentle and makes me feel better mentally
Hope your aches start to disapear soon !
Mrs G
BettyE
Posted
Mrs.O I felt absolutely fine.I don't think I even had a cold. I went back to doing masses of work in our very large garden even to cutting grass on a steep bank with a strimmer on wheels ( a sort of refined version of an Allen scythe ) and,believe me you have to hang on ). I judged several dog shows which means a whole day standing and walking up and down the ring with usually a long drive there and back.
Although I am more than ten years older I am sure I can do the same again when ( not IF, notice, must be getting my optimism back! ) I crack it for the second time.
Mrs. G. You can't decide to be a hypochondriac you have to born one and I bet you'd hate it. I know what you mean, though. It is a mistake to challenge a newly recovered body too severely. As you say, you feel back to normal so you go back to doing normal things.. Good for the spirit.
Mrs_G
Posted
Just wondering how you were doing and if you were feeling any better ??
Was in your part of the world last Sat Friends live in Droxford and Midhurst so we meet somewhere in between so we often meet at The Shoe at Exton V good
Hope you are feeling better do keep in touch
Best wishes
Mrs G