Reducing pred and in tears all the time
Posted , 13 users are following.
Hi, i haven't been on here for a while but this is the most reliable source i know for all things PMR and pred.
I have been on pred for about five years, got down to
3mg twice and had to go back up to 10 mg the first time and 7mg the second time. Anyway, here i am again. Going from 3.5 mg to 3mg and taking 3 months over it! I am worried because i am experiencing lots if very sore throats, had two boughts of ' waterworks' problems resolved by anti biotics, fatigue, general feeling of 'I can't cope with anything if it is the least bit away from my routine. I am also getting very tearful at the least upset and once i start crying i can't stop. It makes me feel as though i will never be happy again. I am generally a 'glass half full' sort of a person and normally just get on with what ever life throws at me. Actually it is a bit like extreme PMT!
So my question is has anyone else had these problems? Or maybe something else is going on and i should go to the doctor
5 years
0 likes, 16 replies
EileenH shirley40391
Posted
I think a trip to the doctor and a request for an adrenal function test, a synacthen test, is called for. What you describe could well fit with your adrenal function struggling to return to normal.
And to be honest - once you are at 5mg and below, there is not a lot to worry about. Were you OK at 3.5mg? Is it just the reduction now that has triggered the problems or were they already there at 4mg?
shirley40391 EileenH
Posted
Thank you Eileen, i will go to my doctor and request the test. If it is adrenal function will that mean a different drug to get it back to normal? yes I was fine on 3.5 mg, feeling pretty strong , so short term that seems to be the answer then. One does get obsessed with getting down to zero when one gets so close!
EileenH shirley40391
Posted
No, not necessarily. Slowly reducing the level of pred to below the amount the body needs to function is the way to encourage the adrenals to wake up. Some doctors think that using hydrocortisone instead of pred works better as it is in the body for less time, but it may not manage the PMR as well. For most people it returns but takes a lot longer than many doctors think it should.
priscilla23271 shirley40391
Posted
I had something similar recently when I stopped using the steroid drops which artificially increased my dose after cataract surgery. I felt very depressed and had achy joint's, water infections, headaches etc. when I stopped using them after the required month. I was on 7.5 of pred at the time, and jumped up to 9 for a few days, then back down to 7.5 which got me back to my usual self. I also started taking Vit b 12, which may or may not have helped. It may be that your body is just not ready to accept the latest drop, even though it is very small. They say you should go back to the last dose that made you feel comfortable. I do hope you feel better soon.
shirley40391 priscilla23271
Posted
Thank you so much for taking the time to reply. It certainly sounds like returning to 3.5mg is the way forward.
judith87642 shirley40391
Posted
Ive only been on Prednisone since May 2019...twice Ive had to increase it..currently 7 is working..
Ive always been upbeat..now I get sad and lonely...makes me mad, .im going to do the DSNS now...next reduction is my birthday present 11/12....I have gained a few pounds to..
im going to see an endocrinologist at Mayo...
shirley40391 judith87642
Posted
It is a long journey and one can feel depressed and lonely at times but that is why this forum is so important. It has kept me going and helped me through some bad times as well as being a great source of information. I am very grateful that i have a condition that has got better not worse over the years with the help of medication, it is just the withdrawal from medication that is now causing a few problems.
ina0821 shirley40391
Posted
i get so discouraged when i read about patients on prednisone for 5 years where are all the patients who successfully finished treatment for pmr within a year or less? i realize those who have more problems are usually more active on these support forums bit it does get so upsetting to hear these longterm cases and no shorter more successful cases
my journey began in May and i was quickly bumped up from 20 to 40 mg due to an extreme flare up i am now down to ten mg i do have stiffness and some tolerable pain the biggest problems i hVe arre extreme edema and stiffness in back of hp area and upper arms plus some groin pain at times ive also had 2 really bad headaches weeks apart
EileenH ina0821
Posted
Anyone who gets of pred easily and quickly disappears into the distance and gets on with life.
The median duration of management with pred is 5.9 years according to a study:
https://www.medpagetoday.org/rheumatology/generalrheumatology/66912?vpass=1
and some 40% of patients are still on a low dose of pred after 10 years.
Only 1 in 5 is off pred in under a year, about a third need pred for less than 2 years. I know several people who were off pred in under 4 years and are still around on forums or at support groups (there are 3 forums based in the UK) but most people want to forget what has been a dark period in their life.
RD_Swede EileenH
Posted
It took me 3 1/2 years to get off pred and know I have been off for 11 years without any flare so I am one of the lucky ones. I pop in once in a while to tell this because I think it may cheer some who have a tough time.
shirley40391 RD_Swede
Posted
That is great to hear! Thank you!
shirley40391 ina0821
Posted
I am so sorry to hear you are still suffering. I hope the medication has helped a little. We all feel low at times but we are here for each other and I have found this forum is a great support.
Silver49 shirley40391
Posted
I was on for just over 4 years and have been off for 4 months. I am feeling really well now and life is busy. My weight is coming down. The most difficult part was dropping from 2.5 to zero. It took about a year.
shirley40391
Posted
I know of two other sufferers of PMR who have got off pred pretty quickly and easily, a third who appeared to have achieved the same but was back on a low dose (2mg) within a few months.
I do feel grateful for the pred as it gave me my life back, it is just a bit troublesome weaning my system off again. I know it will require patience but i am sure i will get there in the end.
Anhaga shirley40391
Posted
I've been on pred since June 2015 although down to 3 mg by end of first year and lower dose subsequently. Currently hoping 1 mg will work, but not sure yet. Took me three months reducing from 1.5! I am personally acquainted with two other PMR sufferers although one of them I only met a couple of times. Both of them have had much more difficult time than I have. I've heard of others with PMR, told that they seem to have gone through the journey quite quickly, but later I hear they had to start taking pred again. So I think the real truth is that most people who successfully wean off pred have taken longer to do it. Not denying there does seem to be a shorter version of PMR which goes into remission more easily and quickly, but I suspect this is the exception.