I think that after a while you feel that with your own personal experience and reading all these posts that you would have got things more sussed but the longer I go on with PMR/ GCA symptoms the less sure I seem about things!
My recent experience has been to be diagnosed with some GCA symptoms in addition to the PMR and that necessitated me going from 10.5 in January to 21mg in June this year to get symptoms under control. After seeing the very nice Consultant in Surrey he suggested that I start reducing I mg per month. This I have been doing until 2 weeks ago when I tried reducing from 19mg to 18 mg , all went well for over a week after reduction and then this week I started to get very slight temple pain and a lot of stinging pain in my arms and back. I've taken this to mean that the 18mg is not controlling the inflammation and after leaving it for 3 days ; the pain gradually getting worse and not subsiding I have today taken 19mg. When originally going down from 15 mg to 10.5 mg (when first diagnosed in Nov 2014) I used the dead slow method but when I suggested this to the consultant he seemed to think this wasn't necessary so I had thought I'd do the I mg drop per month, if all went well, and then do the dead slow method from 15 mg onwards. I'd decided to do this I think as the amounts of steroid was higher( so the % drop less) and I thought I'd cope with 1 mg drops at this level and also I was influenced by the consultant's reaction and I think that perhaps I wanted to do as he suggested on this occasion.
After this long introduction what I wanted to ask after re reading posts is how much pain should we expect on reduction? Some say that you can't expect to be pain free and that you will continue to get pain as you reduce others say that if you're having pain then the inflammation is not being controlled and you need to go back up to where you felt most comfortable. I think too that when I was using the dead slow method I was never too sure what was withdrawl and what was flaring as it was over a long period of time. Do you wait until you have completly finished the 4/6 week period of reduction before being able to tell if it's withdrawl pain ( that starts soon after and gets better) or a flare that starts a week or so after and then starts to get worse?
I feel I should really know the answers to all this but obviously I don't ! and feel obviously a bit disappointed that I'm now again going up rather than down on the Pred.
Thanks a lot
Written by
Jackoh
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Jacko, thanks for an informative post and sharing your experiences.
I think the bottom line on much of this is that the PMRGCA / management equation often poses more questions than answers, despite the best efforts of dedicated professionals involved in finding the possible solutions.
From my experience, yes, the conventional wisdom around management of the illness seems to bring some positive and measurable results: but at the same time, there seem to be so many contradictions in terms of both management approaches and patients' experiences of the success (or otherwise) in implementing any particular management regimen.
At the moment, it's difficult to 'join-up-the-dots' in terms of PMR/GCA symptoms and the successful management of them medically. But we can only hope that, with more and more dialogue between sufferers - and perhaps more funding into the relevant research - there will be some progress over time.
In the meantime, I think the best advice is to 'roll with it', be patient, and keep your chin up despite the immense frustrations. PMR isn't Life Threatening, more Life Changing, and maybe this is the greatest test for some of us?!
MB
I had to put an appt on my calendar today n saw my old scheduled doses of prednisone. It was depressing to see on that schedule I would be at 3mgs instead I am still at 20 alternating with 17.5 on dead slow. But I refuse to be depressed along with everything else.
I shared that to say it is your body who will tell you where you should be and at what dose. Listen to it. I did not listen n pushed past the pain from 20 down to 7 mg. Of 2.5 decrease every month to 10 then 1 mg every 2 wks which ended in huge flair n back to 20mg. So, I do not do the doctors plan but ask for what I need.
This forum has helped me tremendously and for that I thank God. My friends no longer hear me complain because when I have a need or desire to whine I come here. It has changed my life for the better and I can't thank all on here enough.
I pray you find the right tapering dose. Hug n glad you are here.
(Learn to?..) listen to your body and how it reacts to and intuitively makes sense of the various factors in the PMR / management equation, despite the science. In Life, sometimes we have to just 'roll with it' and let go of an innate need to be in control or trust what the 'experts' tell us.
Keep positive in the meantime - laughter can be very therapeutic in the recovery process!
Well I believe your attitude will get you through this well. On Prednisone since February and also through this group and giving my doctor a copy of my PMR book I am also on the Dead slow reduction plan. With monthly blood draw and listening to my body I did have to stall at 12mg of Prednisone for two months but tappering to 11 now God willing. Side effects for me on Prednisone are the feet and hand cramps. Some stomach pain if I forget to eat. (Easy enough). Be well, take care.
Try magnesium supplements for the cramps - pred makes us lose more magnesium through the urine and low magnesium can cause cramp. It is the first thing we are told to try by our GPs here in mainland Europe - only if that doesn't work do they look for other answers.
Oh dear, Jackie, I'm so sorry to hear that it still isn't plain sailing for you even after having an appointment with, and advice from, one of the best rheumatologists for miles around! As you already know, I have total confidence in his advice as far as PMR/GCA is concerned. The problem is that we can all be so different in how our bodies respond to even the best advice/plan. For instance, under his guidance, I was able to reduce down from the high 40mg dose very quickly to 15mg and continued smoothly, although never completely without pain (the luxury of very few) at his recommended 1mg a month reduction rate right down to 5mg - that's where the 'fun' began but that's a common sticking point and another story! Unlike you, I was blessed with blood test markers that very much corresponded to how I felt (they were off the screen at the outset) and the continuous monitoring via those tests proved a very useful guide.
I feel that you now need further advice from this rheumatologist as your experience will now present him with a better understanding of how your body responds. He may feel that you are someone who needs to have a higher dose to get on top of things, especially if GCA is involved. Alternatively, he has a rheumatology nurse helpline on which you could seek advice in the first instance. If you would like to opt for the latter approach, please let me know and I will send you a personal message with the telephone number and the helpline hours. Meanwhile, chin up and, in case you are one of many who have a tendency to overdo things, this is a gentle reminder to rest, rest and more rest until you have this under control!
Sorry to hear your not so good.. I share your feelings re the flare up.... I've not seen a rheumatology yet but have had 5 weeks 3 x 5 mg being diagnosed PMR then reduced 2 weeks ago to 12.5 mg .... all well for a week , second week symptoms gradual gotten worse.. Back , arms and buttocks being the most tender areas.. Pain bad getting up this morning.. So disappointed that the 12 .5 is not controlling it.. Maybe should have been reduction of the 1 mg rather than the 2.5 reduction... So reading your post this morning is so similar to my own... Disappointed..
Thanks for all the replies and support that you receive here. The best laid plans and all that.... Yes I agree we have to be flexible and roll with it. Thank you for you input Celtic. Dr Hughes said to contact him by email if there were any hiccups which I will do. If I'm honest I'm not someone who always does what I'm told but I felt it was only right in this instance to do as suggested as it seemed reasonable and I felt I needed to give it a go. Also have been "precious princess" as PMRpro talks about again to give it the best chance possible. But will continue to roll!!! I should be grateful though Celtic for your info - got a feeling I might need it in the future!
Yes Kiltylyn- don't get too disappointed- early days. Once you've got this under control you may find Img drops more successful. Doesn't matter about length of time to drop or how far- not race to get to zero. Gently gently does it!! Shall repeat this to myself!!!
I understand completely where you are coming from. Reducing can be an emotional roller coaster and then there is the constant wonder if the dosage is correct and how long to stay with it. I feel your pain. Hang in there. We all stand together here.❤️
Withdrawal happens immediately you change the dose significantly - probably the same day. By using the DSANS approach you are having only 1 day at a time of the reduction - if you feel "strange" on that one day it will be the withdrawal effect - and the next day you are back to your usual dose so shouldn't have a problem. If the pain reappears after a time and then increases, even slowly, that is more probably the inflammation beginning to build up to a flare.
The pain returning after a week at a new dose is much more likely to be the latter. But even reducing from 21 to 19 is a good start - it doesn't mean you won't get lower, just not yet. And don't leave it to fester - or it will build up to a real flare and you'll need to start over again.
My experience trying to decipher which pain is withdrawal and which is a return of symptoms was a feeling that I felt the pain the day AFTER I first reduced. The next day I would be on my regular dose and things would even out. I took that to be withdrawal pain and continued on my dead slow method. Just the way I thought my body reacted ...who knows....it is all guess work. I have been tokd that as you age, your body gets reid of medicines much more slowly which could factor in with me.
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