Maintenance dose
Posted , 16 users are following.
A really silly question I know, as each maintenance dose is obviously individual, but I wondered if you would mind sharing your maintenance dosage? I am again really struggling having dropped ( very slowly to 6.5 ) on recommendation of my lovely GP who wants me to keep challenging myself.
My hands are so uncomfortable, I hobble like a really old lady and the arm itching is keeping me awake for a large proportion of the night! OH quite rightly is encouraging me to go back up and I do remember last year Eileen, when I was desperate you said you were on 9mg.
I am reluctantly coming to the conclusion that I need to concentrate more on a maintenance level rather than insane drive to get off pred .
I am beginning to wonder that for me at least that I need to be even slower than everyone else or just reach and stay at a level that makes life ok!
Would love to hear you valuable comments.
0 likes, 30 replies
erika59785 jillian92038
Posted
I tried reducing so many times.....5 years, and experienced very painful Palindromic Rheumatism flare ups trying to reach 8 mg and even at 9 1/2. I have given up, and I am staying with 10 mg. prednisone which gives me quality of life. I had a difficult time trying to explain this problem to my Rheumatologist.
MariGrace jillian92038
Posted
2.5 years in, pred has been at 10mg for a long time. It won't change anytime soon. My Dr. has increased imuran to 150mg with plans to go to 200. The imuran provides some relief. A lot of the day is pain.
Was diagnosed with Antiphospholipid Syndrome. Yet another autoimmune disease (4th). This is the reason I threw another blood clot while on Eliquis. The Eliquis has doubled.
The PMR is the pits. Probably need to go up on pred. I am very thankful for a good doctor and I see her every 8 weeks. MariGrace
Tinapoly1 jillian92038
Posted
I am on a 5mg.dose & it took me about 18 months to get from 7.5mgs to get to 5mgs. Your body tells you if you are ok & you are not ok on your dose. I went down 1/2 mg. at a time & if I tried a lower does for a few days & I couldn't walk I knew my body wasn't ready for the new dose so I would go back up .I could never got down 1 mg at a time except for the ski high dose I was on originally but I can't remember what it was. My rheumatologist saw me last week & said he was going to take me off prednisone because I got lupus, had the worst flu of my life & it was horrifying as my lungs kept filling up so fast with an infection, he knows 8 months ago that half of my calf muscle tore completely off the bone from just standing up & taking one step, I lost 95% of my hair but have some growing back, I had a strange & horrible illness attack my body for 33 days where several nerves in my chest, back ,& then up into my head were giving me electric shocks at times only 5 seconds apart & the shock of each nerve was going about 6 inches into my body. The emergency room doctor said he was perplexed as to what I had but had seen others in the emergency room with the exact electric like shocks. I also had pelvic surgery twice this year on my bladder & urethra & when he went to sew me up inside my stitches were tearing right through my tissue inside so he had to do micro surgery in the front of my pelvis & anchor me from the outside in. My total incontinence also was caused by Prednisone & everything above is all from it too but I can walk again. I am devastated that my thin body that I had until 2 years ago is giant at 50 lbs. up & I eat like a bird. I have 7 auto immune diseases but the PMR/GCA are the most devastating because of the need for Prednisone with no end in sight. I heard also that the average remission was about 5.9 years & the World wide support group says the same thing & since we are the ones going through this I believe the actual patients words. Best wishes to you & your body is telling you that you need to go up again ,wait a while ,& then try to go down very slowly at a 1/2 mg at a time only.
EileenH Tinapoly1
Posted
I'm sorry you have had such a bad time - but can I just say to others this isn't a typical PMR story and not many people suffer so badly on pred.
However - how does the rheumy think he can just "take you off pred"? You are at a dose that is enough to function in terms of the body's daily requirement of corticosteroid. You can only reduce the dose as the adrenal function returns - that will be the limiting factor. But I do wish you all the very best,
Tinapoly1 EileenH
Posted
Thank you Eileen !!! My rheumatoligist who wanted me to wean myself from 5mg to 4mg & so on at 1mg per month until I am off it in 5 months which is crazy since he forgot that I tried going down 1mg a year ago & couldn't walk in 2 days. I can only go down 1/2 mg & that takes a long time . He is saying to go off it because he knows my immune system is greatly affected & weakened by it from what has gone on in the past 8 months with getting lupus,& that strange nerve illness that was shocking my nerves for 33 days,& getting the worst flu of my life. All that along with making my insides tearing so easily like when 1/2 my calf muscle tore off the bone & that my insides tore as my URO/GYNO tried to sew me up . All 3 doctors said each thing above is the result of long term steroids. I got PMR/GCA which I got just over 2 years ago. I told my rheumatologist I am terrified of loosing my eye sight since it took 3 months of excruciating pain in my upper legs, hips,& pelvis & a ski high CRP . I would scream initially when helped up or helped to sit & could only walk 3 inches at a time & that was so painful. The 3 months when my primary was sending me to the wrong doctors saw my c reactive protein went from 50,when normal is 1-8, then up to 90 ,& they said this can't be right since I was off the charts when even an 11 or 15 is bad so a week after the CRP was 90 it was then 96.7. They said I should have died of a massive stroke or heart attack with that much inflammation in my body for 3 months. The 2 years of Prednisone brought me down to the lowest crp of 15.8 which is still not in the normal range of 1 through 8. I will try to go down to 4.5mgs from 5mgs for a month or so but if I can't walk like before I will go back to 5mgs & try at another time. Best wishes to you too Eileen ! I pray that one day there is a drug that helps us that doesn't have bad side affects & I pray for a cure.
jillian92038 Tinapoly1
Posted
Oh my goodness what an absolutely horrendous time you are having! I feel utterly guilty for whingeing on about my problems which are absolutely nothing in comparison.
Thank you everyone for your replies, which confirm my current thinking that I may have to be content with a higher maintenance dose at least for now. However, reading the dreadful side effects of pred your have suffered I, like us all, still worry about the effect long term.
Take care.
Michdonn Tinapoly1
Posted
Good luck, hang in there you get through it. Sorry you are suffering so. 🙂
EileenH Tinapoly1
Posted
Has no-one suggested trying tocilizumab/Actemra? I wouldn't say it had no bad adverse effects but it works in GCA/PMR. With levels like you had surely they have considered LVV (large vessel vasculitis)? It may not be suitable for you - but it is worth asking. There are other IL-6 inhibitors that are being trialled. I think your lot need to think outside the box,
EileenH jillian92038
Posted
By no means everyone has such problems though to listen to some doctors they do! I have been on pred for over 10 years - no problems although I wouldn't mind weighing just a bit less! But lost 35lbs by cutting carbs - and pred gives me a life.
ptolemy Tinapoly1
Posted
My CRP has been over 400 after a hip op and is currently 88 having recently been over 100nfor no apparent reason. My doctor said it was because I tend to have high inflammation, so nothing to worry about. I have not died of a massive stroke yet!
jillian92038 EileenH
Posted
Gosh well done you! 35lbs is no mean feat. I really appreciate your advice- thank you .
gail71461 jillian92038
Posted
This is exactly where I am right now! Down to 2mg but struggling at this point. Primary MD makes me feel forced to get off and I also all get caught up in the dreaded Pred head game. Not finding a Rheumy Im comfortable with, I do very badly on RA meds which is what they seem to want me on. I'm having the debate in my head to go back up to 2.5mg where I felt good. Also, what's with the itching! last 2 nights the top of my foot was insanely and uncomfortably intensely itchy. my feet have been really achy with weather changes. Never heard of the itch and PMR
peggy_56092 gail71461
Posted
A few months ago, My left ankle itched a lot. I started putting Sarna lotion, recommended for exzema, on for a while. Now I put on a bath lotion after a bath. Never asked or got an explanation.
peggy_56092
Posted
I should add that I have entered my 5th year of PMR, currently 5 mgs for a couple of months. During my first two years I remained at 6 mgs with added steroid shots for my knees and hip. I upped to 7 after knee replacement two years ago, no more shots, and had a 15 mg flare, reduced quickly to 7 and now am hesitant to reduce until arthritic neck improves during the cold Jan/Feb/Mar here in Oregon.