more info as requested
Posted , 5 users are following.
diagnosed in /feb commenced on 15 mgs seen in april by consultant 15mg for 2 months seen again in june 12.5/10mgs alt days 10mgs started in august 9mgs started in begining of november bloods started slowly creeping up since august hope this helps never symptom free even on higher doses .
0 likes, 18 replies
MrsO-UK_Surrey
Posted
As you've only just increased the steroid dose back to 10mgs, then you will probably need to give it about a week to see if you feel any improvement. If not, then you may need to increase back up to 12.5 if that was the dose at which you felt the most comfortable, reducing after a couple of weeks by just 1mg to test the water, so to speak. But importantly it would be a good idea to have the blood tests (ESR and CRP) repeated to check that the they are heading back to normal. How lucky to have your GP on your side, at least I assume she will be as she is a friend of your's. Don't lose heart as flares are quite common in the first 18 months or so.
MrsO
Mrs_G
Posted
Yes you do have to give it more than a day or two to feel the benefit As Mrs O has said flares are common so dont panic
I had a major one after 14 months and had to go from 4mg to 15mg to control it and since than ( nearly 2 years ) I have managed to get back to 4mg but it has been a rocky road and i have had minor flares I had to go from 2mg to 5mg earlier this year So Im afraid patience is needed
Do have your blood tests done I have mine done every 2 months now before my next reduction prog is discussed Until I got to 10mg ( from 20mg ) I had them monthly
best wishes
Mrs G
MrsO-UK_Surrey
Posted
By the way, well done at getting down to 4 again - I know just how hard you've worked on this. With a bit of luck and a following wind you'll be ok now at least getting back to where you were - 2 I think? :D
MrsO(Shirley)
EileenH
Posted
Although the reduction has been perfectly acceptable according to most of the literature, something that has become quite apparent to me from the experiences reported on this forum and on the one linked to the pmr gca uk northeast support group is that even 2.5mg reductions are fraught with the risk of overshooting the lower \"maintenance\" dose that will control the symptoms over a longer period. 15mg will deal with the symptoms fairly quickly, the most recent report from a group in Italy is that 12.5mg will work in about 70% of patients within a few weeks and they suggest that using this as a starting dose will contribute considerably to the overall steroid dose.
It looks as if 12.5mg was doing the job well - but the reduction to 10mg has taken you down to the level just below what you need for where the activity of the underlying autoimmune disease is AT THE MOMENT. What I have seen is that patients apparently are doing well but they do see the markers creeping up very slowly - and to me this is an indication that the inflammation was not as well controlled as it could have been before the reduction and the slightly lower dose let it \"get away\".
If I were you, I would try 12.5mg again for a week if the 10mg doesn't bring an improvement in a few days - mainly because the 10mg didn't really seem to be holding it anyway judging by the figures. I'm sure I'm preaching to the choir - but just in case - I assume you do know that the pred isn't a cure here, this is symptomatic control? It's working on the inflammation caused by the underlying autoimmune disease that nothing much is known about. If the autoimmune bit is continuing at the same level then too little pred lets it cause the inflammation to bubble up again and the bucket fills up like with a dripping tap and then suddenly overflows.
As MrsO has suggested - once the symptoms are under control at a slightly higher dose try reducing at 1mg at a time the next time. And as she says - you are so lucky to have a doctor who will discuss this and treat you as the intelligent human being you are!
And as a reference: I have had PMR for about 7 or 8 years, 5 years undiagnosed and untreated. I have been on pred for nearly two and a half years and am currently on 8mg/day methylprednisolone which is equivalent in anti-inflammatory activity to 10mg of prednisolone. I've been lower and higher but this dose seems to work OK - and the rheumy here (I'm in northern Italy) seems to accept this as a perfectly reasonable longer term dose. You didn't say how old you are but I do get the impression that those of use who develop this in 50s/early 60s seem to have a more tortuous journey sometimes - maybe because we have higher expectations of how we want to feel.
Don't fall into the trap of desperation to \"get off steroids\". You know as well as I do what steroids CAN do in terms of side-effects - but here they are the only thing between you living a normal life and being stuck as an invalid. I've tried both ways (not through choice I assure you) and this way is a lot less painful and depressing. There is no joy in sitting at home alone because you can't get anywhere alone and crying into your cup of tea because of the constant pain of the bursitis that can be part of PMR if left to go on a long time. I know - I've been there. Using the steroids properly should prevent any need for painkillers that don't work anyway but also have nasty longterm side effects. They aren't all bad!
So I'll echo MrsO again: don't lose heart - this is a temporary blip and you will get
carolk
Posted
EileenH
Posted
If it is really painful don't worry about going back up - as I said it really did look as if the 10mg was barely holding it anyway and just upping the dose by 1mg from 9 to 10 wouldn't really be enough to deal with the resurgence. People often make the mistake of edging up a bit when the pain returns - some GPs like to hit it hard by a much higher dose for a few days and then quickly back to the dose where you were comfortable. In your case that sounds like 12.5/10 alternating. Some GPs also feel that at a good status like that where the next drop is a problem (as has been the case here) a few months at that level is a good idea before trying another drop. I think it is a good idea to watch the markers (CRP, viscosity) over a period and see how long they keep dropping for to find your lowest level - and then try to keep them there. Some of us don't have that luxury - mine are obstinately low permanently however bad I am - but the \"normal\" ranges are only an indication and it would be helpful to know where each of us is normally. A GP might be happy with a patient having an ESR of 15 to 20 which is well within the normal range, but that particular patient may be best at an ESR of 8 and no more (I know ESR is a bit dodgy anyway but that is what most practices use).
I think that when patients on steroid develop cataracts it is merely a speeding up of something that was going to happen anyway and the dry eyes part could be the PMR - I had sore itchy dry eyes UNTIL I started on pred and then it all cleared up to my optician's amazement. Many of the side-effects you hear along with the wails about how awful steroids are not half as bad as they are painted. I don't go a bundle on being as cuddly as I am now and the chubby rosy cheeks REALLY get my goat - but the best way to deal with them is cover up the mirrors and don't have too many photos taken :wink: . The alternative doesn't bear thinking about. There are 80 documented side-effects of steroids (we've added a few more unofficially) and noone gets them all. Most of them happen at the really high doses and at the lower doses (10mg-ish and down) they get progressively fewer and milder.
It is a very interesting experience being on the other side of the desk/blanket isn't it? All sorts of things you used to sit and marvel at when a patient said or did something suddenly make sense. And you realise why they got so confused when it was SOOOOO obvious to you! What was your background? Have you done nursing training or what?
hope you feel better soon,
Eileen
carolk
Posted
my gp is keen for me to manage my illness because of my background but with the back up of bloods and contact when ever i need it , this sounded good in theory because i am a great believer in getting on with life its so precious ,but i felt i was walking in treacle now i know why the bloods were rising despite no change in symptoms and now i know why they are sudenly getting worse i can up the steroids not feeling as if i am prolonging the process of been steroid free , that will happen sometime in the distant future .i shant worry about the chipmonk look i was overweight anyway and so far my weight has not changed much just my appearance ,.my career backgound is i am qualified srn with lots of different nursing experiances it theatre /burns / qualified district nuse /my last nursing post was clinical nurse specialist in pain and symptom control palliative care , advising gps families and patient supporting them in their own homes and following through in bereavement .i was on call 24hrs aday with a team of nurses and hospice/hospice consultant back up joint funded by nhs and charity donations.i became interested in children and bereavement and lectured on university and post grad courses it was very rewarding but i always seem to get the slot before lunch !!!!!now i look back and wonder how i packed it all in to the days with a family etc but retirement is a joy and my career in cancer care makes you value every minute even with the dreaded pmr .thank you again for taking the time to help me carol
EileenH
Posted
\"The patient failed the drug\" - how I hate that in the notes and especially when that wasn't the case. PMR isn't like other illnesses where pred is used but even the people who should be most aware of it appear not to accept it takes time and patience. We're all different. Deal with it docs!
And please can we all get a shottie of your GP? Wouldn't we all like one of them!!! :D
Eileen
mrs_k
Posted
I noticed you are located in Devon.
Please either visit the website - directions on the 'stickie' or email me on this website.
carolk
Posted
BettyE
Posted
I second that. I gave up on the rheumy dept. before I even saw the consultant. There's nothing to beat a doctor who knows you and with whom you feel comfortable and who will listen and not just lecture.
I'm currently aiming to get down to 3.5 ( I've had PMR for nearly four years and for three years twelve years ago so I have plenty of records to refer to ) and I had to chop the 1mg. pills into quarters last time when I got this low. I know that Eileen has remarked elsewhere on how much difference even a small increase or reduction can make.
There's lots of stuff on the other forum, too, and several of the same people. God luck
carolk
Posted
carolk
Posted
carolk
Posted
carolk
Posted