Hello,
I wonder if you have ever experienced this? I was diagnosed with PMR in december 2014. I started with 15 mg of prednisone and my doctor increased the dose to 20 mg in January. I began my withdrawal 17.5 mg with decreased 1.15 mg thereafter. At 16.25 mg, I felt very bad psychologically (depression, panic disorder with fear of losing control). I was scared! This morning I rose to 17.5 mg telling me that I might be decreased too fast. I try to slowly diminish. Have you ever felt a psychological malaise trying weaning? I feel better than yesterday but I feel fragile in my mind. Thanks for your answers ! Have a nice day !
Someone on another forum has just complained of depression when she reduced from 4mg to 3mg in one step. This afternoon she took another 1mg - and felt much better quite quickly.
Some people are very sensitive to the changes in dose and react quite strongly. That is why we suggest the "dead slow and nearly stop" approach - here is the link again:
https://healthunlocked.com/pmrgcauk/posts/131189593/dead-slow-and-nearly-stop-reduction-plan
You will find the description in the replies part of the thread. You only have a single day at a time of the new dose at first. I find I feel "strange", I can't explain in any other way, for the first 3 or 4 days I try the new dose and then my body seems to say OK, I accept this change is going to happen. By spreading it out like this the effective drop is very very small and your body doesn't mind so much.
Good to hear from you Karyjo and good luck.
Hi Karyjo!! Tell me about it!!! I started on 20mg of pred and when I was tapered to 17.5mg I became an absolute psychio!! I felt sorry for my husband as he didn't want to leave me on my own. I seem to loose control of myself, my thoughts and my actions!!! These feelings lasted about a week then when my body became accustomed of the new dose I was ok! I tapered again from 17.5mg to 15mg which didn't seem so bad psychologically, but my face 'hamsterfied' for about a week then back to normal again!!! Strange! Hope you're coping ok with it all.
Andrea
Hi - there are a lot of side effect, some get one or two, others differ. I personally have not had any psychological effects but I do sometime get what is refered to as 'brain fog' you know what you want to do but it can become difficuilt to think straight - not all the time and certainly not everyday. Sometime you have to persist for a few day and let things settle down with the new lower dose. I would start to think about how much you are going to reduce next cycle It's always best to be slow and sure
Best of luck, John
Andrea Ohh, I don't know how to thank you! You wrote "I Became an absolute psychio !! I felt sorry for my husband as he did not want to leave me on my own. I seem to loose control of myself". I felt exactly like you !!! You have been very strong to live that one week. I'll give me a week's holiday before reducing again. you encourage me because your tapered again and it didn't seem so bad paychologically. Thank you again because you have so much reassured.
I've just realised why my reply was stolen for moderation - I must have put in the wrong link to another forum!
Here's the right one:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
Another lady today on another forum says she has felt depressed when going from 4mg to 3mg when she did it from one day to the next - she took the other 1mg that afternoon and felt much better very quickly. So she will try more slowly next time.
When I reduce I spread the reduction over a few weeks as described in the link above (in the replies part of the thread) I find I feel "strange" for the first few single days of the new dose and then my body accepts this isn't too much of a problem and I feel OK - but I continue the slow introduction of the new dose.
It also seems to avoid other sorts of "steroid withdrawal" problems - because as John says, there are several. For many people it feels like a return of the PMR pain - but it is due to taking the pred away too quickly when the body is used to it.
Yes, it can happen and I have felt it at times. I am so careful with my reduction from 20 mg. I tried 2 1/2, and it did not work well. I am reducing 1 mg a month, and I am now on 17, and it is finally working.
Thank you Eileen so much. I think I will try, like you, to spread the reduction. I understand that your reduction plan was very slowly. The first time, I did not have this weird psychological sensation until 15 mg, but for now, at 16.25 mg, I felt so bad. I don't want to deal with this anymore ! Thank you so much Eileen ! I love this forum !
You know what gets me is that this is something documented in the literature - they call it "steroid withdrawal rheumatism". But when we talk to doctors about making the reductions smaller to make this less likely they look at us as if we've got 2 heads!!
You know what gets me is that this is something documented in the literature - they call it "steroid withdrawal rheumatism". But when we talk to doctors about making the reductions smaller to make this less likely they look at us as if we've got 2 heads!!
Hi Karyjo -
Just add me to the list of mood swinging harridans.
We must all have a group of long suffering partners - forget mothers day and fathers day there should be a "putting up with folk on steroids" day.
Also the confusion and forgetfulness - I seem to get stuck in a chain of thought - I will be thinking about something specific and then I will just get stuck - I will find myself remembering for example 21 - and I will be trying madly to remember why I must remember "21" - sometimes I can get back to the why - other times I just have to let it go.
Roll on normality - or what passes as such!!
Janet08828 I am EXACTLY the same with my memory and confusion....I am 64 and this is driving me batty!!! In the middle of a sentence I also have to stop as I wonder what I am talking about and as for the black holes......they seem never ending. Just reducted to 20mg pred from 22.5mg and hoping for an improvement!
It will get better after 20 mg -- with 17 mg I noticed a difference. I reduced 1 mg at a time --- a month.
ditto here. mood swings abound.
Joined that club - but I would like to leave - Please!
When you get to 10 mg and have to consider the max 10% rule this chart might help: (note 0.5 = half a 5 mg tab)
Total mg 5 mg 1 mg
equals equals
9 1 4
8.5 1 + 0.5 1
8 1 3
7.5 1 + 0.5 0
7 1 2
6.5 0.5 4
6 1 1
5.5 0.5 3
5 1 0
4.5 0.5 2
4 0 4
3.5 0.5 1
3 0 3
2.5 0.5 0
2 0 2
Thank you everyone for your comments. I feel less alone. I'm on my second morning to have risen to 17.5 mg and it gets better! Oufff ... I feel if I got up to a boxing match. Definitely, I will clearly reduce very slowly because my body does not accept decreases of 2.5 mg at a time. Thank you to Andrea, Eileen, Oregonjack, Erika, Janet and Lisa Rapha.
Eileen you wrote: "Purpose When We talk to doctors about making the smaller reductions to make this less Likely They look at us as if we've got two heads !!" You put your finger on the problem. All doctors want to reduce Prednisone 2.5 mg at a time and as quickly as possible, but when you tell them that you are very sensitive about weaning, their faces said "it's in your head between your ears". The last doctor gave me a sermon about taking Prednisone and it could be deadly. I will no longer see this doctor. I found another endocrinologist specializing in the adrenal glands and I will see her June 9 I have my fingers crossed !
Thank you so much to all of you. This forum helps me so much through your answers and your experiences.
Have a good day !