Just thought I'd write and try to give quick picture of how silly I've been over last week or so, which may or may not help others and ask for some advice where I go from here.
My daughter gets married in August and firstly I'd got it in my head that I'd like to get down to 10mg at that time ( I'm on 11 mg at the moment taking very slowly approach since Nov/ Dec after starting at 15mg) first mistake!! Can't set deadlines!
Two weeks ago I had got down to 11mg and was doing very well so decided to do one day at 10mg. Felt really well, fatigue much better and I think thought I was really back to normal, second mistake! So in that week I travelled to London to trail round shops with my daughter, offered to host and cook for a family get together of 13 that weekend and the following day it was my husband's birthday. I can hear people saying No you don't do that but I think I had just forgotten what it was like to feel really very unwell and up to this point had been very careful about not overdoing things and resting etc.
Consequently I have felt quite unwell, all my stupid fault I know, for the rest of last week and this weekend. I have had pains in my arms and my legs , but mostly a stingy feeling in my arms and around my eyes a little. A little bit like shutting the stable door after the horse has bolted I did for the majority of last week really rest and this weekend but have still got pains a little.
Can I ask advice.Is it best just to continue really resting and see if inflammation subsides or should I up the dose ( really didn't want to do this , but my own stupid fault) Have been waiting to see if it does just get better on its own. Thanks for reading and support of this group.
Jackie
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Jackoh
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Oh dear, Jackie - it's a horrible lesson to learn isn't it. But you certainly aren't alone in suddenly feeling you're fit enough to take on the world again only to have PMR come back to bite.
The most important point to remember here is that you tried to reduce at the same time as you were planning such a hectic week. We always recommend delaying any planned reduction until we can give ourselves a quiet, relaxing week or so - clearing the decks - to give our bodies every chance to adapt to the new dose.
Why not increase the dose to 12mg for a few days to get on top of the inflammation? If after a week or so you feel well again, then you can try returning to 11mg via a few days at 11.5. If you still feel well, then if it was me with a daughter's wedding fast approaching, I would remain on that dose until after the celebrations. Good luck!
Thanks for your speedy reply. Yes I agree, I suppose I was trying to resist it as I had, wrongly, my own agenda and plan for the next few weeks. Better to learn this lesson now though I feel than just before the wedding. Thanks again for the support of this group- it's invaluable!!
Hi hope you don't mind me asking advice again! I have raised dose to 12 mg for the last two days and apart from feeling heady I have felt much better than last week and a half , with no pain. I have been doing the very slow method of reduction in the past because I am quite sensitive to changing the dose( can feel a bit weepy) .If I'm only on this raised dose for a short time , should I just go down to 11.5 , without taking two or three weeks ( which previously has been the case) and then again down, after a few days to 11mg. I think that is what you were suggesting but wanted just to clarify this. is it easier to do this because you have only been on raised dose for a short time? And also had been there before? thanks a lot, Jackie.
Jackie, yes, provided you have had a good response to increasing back to 12mg, you should be fine to reduce back down more quickly the second time around to the dose just above where you 'flared' after all your extra activity. If it was me, I would spend another few days at 12 before trying the reduction to 11.5. Then if all remains well after another week, try 11mg again. Hopefully, you will then have a pain-free time to enjoy your daughter's wedding.
Best not to set yourself too strict a deadline. Yes, it's nice to think you can get down to a certain level by a certain date or event. But really all you are doing is putting yourself under more pressure! Just go along as normal, and as Celtic says, don't reduce Pred at the same time as something else important is happening. Does it really matter to you, or your family whether you are at 10mg or 11mg, or whatever. I'm sure they'd be much happier seeing you relaxed than stressed out just to get down that 1mg.
When I went to NZ over Xmas, I got down to 6mg a few weeks before I went and stayed at that dose all the time I was there (6weeks) and for a week after I got back. Result - no wobbles! Just a great time.
In the great scheme of things, a week or two on the higher dose doesn't really matter much. More important is - enjoy the wedding!
Hi Yes thanks for taking the time and trouble to reply especially knowing the difficult times you yourself have been through. Know you're right. There seems to be a lot of pressure that some of us put on ourselves to reach a certain level. I certainly fluctuate between being sensible and realising what difference does one or two months make in the scheme of things, to being driven to achieve a particular drop within a certain time scale. This sometimes isn't helped by GPs. Yes its softly, slowly and just listening to my body. Sure I'll make loads more mistakes - is a journey isn't it? Need patience, perseverance and for me, faith that there is light at the end of the tunnel!! Jackie
I agree Jackoh, because we are pushed by doctors to reduce to such and such a dose by a particular date our brain gets programmed to think that way and we sort of panic if it has not happened.
Yes, there is light at the end of the tunnel. I'm now down to 4.5mg, just started slow drop to 4mg, and must admit feel really good in myself at present (hope pride doesn't come before fall!!). But as you say, it has been a long and difficult struggle (nearly 5 years), in fact, until now, looking back, I didn't realise how difficult. I changed GPs a couple of years ago, not long after my husband died - I really didn't want to go there any more, and my new GP has a completely different approach, for one thing he knows about PMR/GCA, and he lets me (within reason) make my own decisions about reductions etc. That makes you feel better because you feel in charge. He still keeps an eye on things, but as he says, "you know your own body best". I think that's something we all learn with PMR, but it takes us time to do so.
I also think, that going to NZ completely on my own with arthritic knee/shoulders and one-eye gave my confidence a real boost. I know my OA is never going to get any better (but if it stays as it is at present I can manage) and my sight will never come back, but so what. If I want to do something, I can!
Sorry to ramble on, just trying to say - things do get better!
Yes, you and many others are a real encouragement and I for one really appreciate yours and other's imput who don't just " talk the talk" but have "walked the walk."Really pleased to hear that after a difficult time you are "coming into your own" Excellent!
Why did you feel you "had" to aim for 10mg for the wedding? I'm not criticising - I'm intrigued.
The most important thing in August is for you, as the mother of the bride, to feel well enough to enjoy that day along with your daughter. In the great scheme of things, 1mg isn't going to make much difference here or there - except, as you have found, you don't do as well at 10 as at 11. It isn't likely to let you lose a whole load of weight - though if you really try you can probably still lose a bit if you want to at 11mg.
In the meantime you have a lot of things to deal with - and you will do far better at that at 11mg than you will at 10mg. The last thing to be doing while sorting all these joyful preparations is to be trying to reduce your dose. If you really want to be on 10mg for the wedding - reduce it that morning!
I know what it means for you. My daughter got married nearly 3 years ago when I was at (nearly) my fattest - between buying the outfit and the wedding I had lost an inch or so round my waist - enough to let a pair of trousers be too big! Since then I have lost a load more but I look back on that day and wish I could have felt better rather than having to sit in a corner with my crutches propped up next to me. So don't spoil things for the sake of 1 measily mg of pred.
Don't know why I wanted to get down to 10mg! Thought, I think that at 10mg that was a psychologically ok place to stay for a while, so I had worked out I could get there in time for the wedding!!!? As I write this it doesn't really make sense to me never mind anyone else!
I've actually lost weight being on pred which again has been because I've been reading posts on here re cutting back on carbs etc . No advice given elsewhere!! So all good. Self imposed pressure now off!!! Whew! Thanks for comments and support- invaluable. Jackie
Nice to hear my theory about carbs being confirmed again! It has got at least one specialist thinking about dietary advice so the more people who find it works the better - it supported the "dead slow..." reduction concept being possibly used in a study.
In the absence of knowing the cause/having a cure the first priority is to learn how to use the drug we know works in the best possible way. It hasn't been studied before - but it could well be soon.
But don't beat yourself about not being lower on pred - concentrate on feeling as well as possible for your daughter and enjoy the day.
Strange isn't, but I felt I wanted to get down to 10mg for some unknown reason. Could it have been that then I am one reduction to getting into single figures? I know it is irrational, but we humans are quite often irrational, aren't we? At least I haven't suffered any flares as a result, but I will be ultra careful from now on!
Anyway, you have received excellent advice now, and I just hope you enjoy your daughter's wedding etc.
I too raced to 10mg on Doctors orders. Up to 15 when it started to return by way of GCA, down to 10 again up to 15, now down to 14 and today up to 15 again. This time we do it slow from the start. There is only one boss here and it is neither me nor my Doc. It is PMR and sore temples! They rule the roost as far as pred administration goes, but, they won't win in the end, there is a route out, I just have to find it. So Settle down to acceptance, forget fighting it and have a nice quiet life. That's to all of us.
Enjoy the wedding Jack Oh, you deserve it! Oh and don't worry about a few extra pounds, tell people why there's nothing to be ashamed of and never forget, a few extra pounds iron out the wrinkles! Hooray!!
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