I have had PMR for two years and am now down to 2mgs of Pred which I did gradually. My bloods are right down to 1. I still find it very difficult getting out of bed in the morning and my limbs ache most of the day. I am now having Bowen therapy and am taking 4000mgs of D3 and Magnesium. If my bloods are that low why do I still ache so?
Hi Tricia, the one thing I immediately thought is that maybe you have reduced a little too far. If you are aching most of the day I would go back up to the level of pred you were comfortable with that controls the pain.
I have had a really bad flare and have had to go back up o 20 mg ( very reluctantly) . But I say if you are on pred anyway don't suffer the pain more than you have too.
Best wishes, Sue
Hello Tricia, I agree with sue, you are clearly on too low a dose currently and I have to ask, did you continue to reduce even when more pain returned or has this pain come on suddenly. Either way to be at 2mgs after only 2 years is a little on the quick side. Yes, I know I have had a flare so that put my recovery back some months but nevertheless I am currently on 7mgs and also approaching my second anniversary.
you need to up your preds to the last dose level whereby you were pain free, stay there for a good 6 weeks and then reduce slowly using the dead slow and almost stop reducing method. I use this method but only ever reduce by .5mgs.
not every pmr sufferer has raised esr/crp levels so the fact that yours are not showing raised levels does not mean you no longer have inflammation.
all the supplements that we take, and I take, vit d, calcium and magnesium, all help with the side effects of steroids, however, none of them help with reducing the inflamation caused by the auto immune condition that us currently bubbling away in us. This condition will hopefully eventually burn itself out but in the meantime the correct dose level of preds will keep the inflamation under control. Regards, tina
Hi Tricia,
I have had PMR for just about three years and am currently taking 10mg of Pred. I tried reducing to 8mgs very slowly, but I got a flare up, so back up to 10mg. Even at 10mg, I still have some pain, albeit mild and only in my shoulders.
My Doctor has suggested that I stay at 10mgs a few more months and then start reducing once more.
Everybody has different amounts of pain while on the same dose of Pred, so it is really hard to speculate what amount you should be taking.
Your body will tell you what amount of Pred you need and it sounds to me from what you said that your dose of Pred needs to be higher.
I wish more than anything to be at a lower dose, but there is just too much pain. Reality tells me that I unfortunately need to stay at a higher dose. I followed the reduction plan Eileen suggested and that didn't work for me, so staus quo for the time being. I'll try once again in a while.
Cheers,
Shawn
Because the bloods don't always reflect the activity of the autoimmune part of PMR and it is the symptoms that should always be king, not the blood markers which are only ever a guide. Have you tried taking a slightly higher dose? Where did you last feel well?
You cannot reduce relentlessly to zero - even using my very slow reduction plan. It will get you to the end point you are searching for: the lowest dose that gives the same result as the starting dose. That is where you can rest a while - but you keep trying a small reduction every so often to see if the autoimmune disorder has waned at all. It probably isn't steady in its activity, waxing and waning a bit. At its low point you may get to a lower dose but then find you need more at another time.
If you can get rid of the pain with a slightly higher dose then that is the answer, you are simply at too low a dose - but if pred won't sort it then it is possible there is another cause and your doctor should do some other tests, such as thyroid function or vit D to see if that is low despite your supplement level.
Eileen, I'm in a similar dilema. I've been at 12 mg for a little more than a month and have signifigant stiffness. However, I've been keeping a daily log of my symptoms for over a year and it's very revealing. The nature of the aches and pains I'm currently experiencing have haunted me throughout my 18 month journey reducing from an original dose of 40 mg. However, the stiffness and pain has never lasted this long.
If I wanted to test out whether my current dose is sufficient by upping the predisone, what level of increase would I try? 3 mg? 5mg?
If I did up the dose to 15 mg or higher and saw some relief, what is the recommended schedule of reduction back down to 12? I'm very sensitive to drops and have only been reducing by .5 mg every 3 to 6 weeks since reaching 18 mg. Would I have to take another 6 months to get back down from 15 to 12 mg.
Hello Jean, I'll leave Eileen to answer your query, but just to say that I always stay on each dose for 4-6 weeks, mostly always 6 weeks, then there's the 2-3 weeks on the dead slow and almost stop method of reduction and I only ever reduce by .5 and not a whole 1mg. Good luck, tina
If you are that sensitive, maybe. It is impossible to say. Has the pain and stiffness gone away with previous reductions? If so, it suggests you are about at the right dose for you at present.
Were you diagnosed with GCA or with PMR? When do you take your pred?
You and I have dialogued many times. Although the diagnosis was PMR, my initial symptoms and overall history indicate that GCA was likely present. No need to get into all that again. It's something I'm very confident about. I haven't tried to convince any local practitioners of this conclusion as I expect it would not be welcomed or accepted. Dealing with locum practitioners in the Northwest Territorries, the only priority is to get off prednisone ASAP.
The pain and stiffness is really variable with each reduction, but always there to some extent. As long as the degree of pain or location of pain doesn't increase/change at a level, I take another .5 step down.
I also have pains that I know aren't PMR, which have been dealt with by Bowen. They tend to creep back if I don't do the exercises given to be by the Bowen therapist. My bad. Sometimes I'm afraid to do them when pain(s) are increasing.
Interesting enough, my post this morning may have been a bit cathartic. I'm feeling much better today. I've been avoiding my 2X weekly aquatic exercise class for the past 2 weeks not wanting to make matters worse. I felt like I'd been hit by a truck last night, but today the aches and stiffness have lessened.
I began taking my prednisone around 2 am with a bit of plain yogurt several months back. I usually wake at that time anyway to go to the loo.
Don't we all love the mysteries of PMR and prednisone reduction.
I guess I'll stay the course for now.
Thought it was you but I couldn't remember the last details - my bad!
I think it does tend to take longer for any steroid withdrawal to fade as you get lower - by definition it's a bigger percentage drop. Are you using the "Dead slow and nearly stop" approach or just every day one dose to every day the new dose straight off?
DSNS, usually beginning at 4 days old dose.
Perhaps try from more days old dose and see if that helps? I feel quite disgusting for the first 3 days of new dose and now I'm down low I repeat some of the stages too. Not that it does much good - get totally stuck at alternate days 4 and 3. Accepting 5mg for at least 6 month I think and giving up the unequal struggle for a bit. As approved by my GP.
I'll give it a try Eileen. I guess it's particularly frustrating because I'm at 12 mg. A slower approach would be much easier to accept if I was at least 10 mg or less. This time last year I was at 18 mg. I know slow is best, but it's hard to accept that I've only reduced by 6 mg in 12 months, and still suffer all this pain and stiffness at times, allbeit moderate symptoms in the grand scheme of things.
Thanks for listening and good luck with your continuing journey. It's so great to have you to "talk" to on these down days.
In some people pred doesn't work as efficiently as in others - it may be you are one and that would mean that your 12mg is only doing what 9mg achieve for someone else. That's why we keep emphasising that everyone is different - unfortunately some doctors don't realise it either.
Very interesting Eileen. You may have hit the nail on the head.
I came to another realization yesterday....In one of my replies I said I was feeling better. It didn't last. However, I realized my condition has been deteriorating as the day progresses. By the time I crave my bed, my arms are so sore it hurts to push myself up from my armchair. When I wake at 2 am and get out of bed to take the prednisone my arms are worse and my whole body feels like I have a really bad flu. I struggle to get out of bed. When I get up at 5 am I'm still a bit flu sore, but it improves in a couple of hours. I fell good until about mid-afternoon when things start to go sour.
It may be that the effect of the prednisone is wearing off quicker than it used to. Is that a possibilitiy?
I thought I'd try a bit of an experiment for a couple of days and take tylenol on a regular basis to see if it helps. From personal experience I know that tylenol has helped with non PMR pain in the past. If it doesn't help I might try splitting the 12 mg, taking 7mg at 2 am and 5mg at 6 or 7 am.
Thank you Eileen and everyone who has offered advice. I really did believe that as my bloods were low my PMR was on the way out. My doc said to reduce and I followed your plan Eileen But at 2mgs I felt awful and depressed. Yesterday I took 5mgs and I feel a little better so shall continue with this dosage. Once again thank you everyone for your kind help. I feel better already. I'm not sure these docs appreciate the problem.
Tricia.
I'm pretty sure most of them don't. On one of the forums a former GP who now has PMR said her perception has changed dramatically - before she was desperate to get patients to a low dose asap, now she was asking whether one or two mg here or there really matters in the great scheme of things.
I think that sound liek a plan. Though I'd rather 1mg more pred than use tylenol/paracetamol.
Hello Jean,
I am very much like you, very sensitive to drops in pred, I was put back up to 15mg pred last december, and now only at 11mg. The reason I posted to you is to say I have to split my dose and it works better for me...I have to drop VERY slowly....but remind myself of tortoise and hare!
I have to admit though, with the dreaded Christmas coming upon us (only because of sheer effort) I am tiring because of the shopping....I know people will kindly post, to do it online....but I don`t have much luck with that!
Good luck, we will all get there in the end.....
I have an even better solution - I don't do any! My brother decided many year ago he didn't want to do even kids Christmas presents because of cost (we lived abroad at the time) and we already didn't do presents for my husband's family (his brother was most peculiar  .
When PMR struck I simply couldn't do it - shopping of any sort was daunting and thinking out of the question. Our daughters get money transferred to their bank account for the entire family and we say we want them to get something the whole family will enjoy or benefit from. It means they won't get things they don't need - and will have to throw away other things to accommodate them anyway since they have small flats with no storage except in the roof.
It was all very different when we were children - Christmas and presents were a highlight in a rather dull world and even a small bit of glitter was massive. Today we eat and buy far too much all year so it has become a feast that requires enormous quantities to make it stand out - and retail encourages us to spend, spend, spend. Then what do we do in January? We throw it all out and diet...