New here. In a Flare and needing help with Pred dosing
Posted , 11 users are following.
Hi All! new here! Im 62yrs, have Seropositive RA and PMR diagnosed 3 yrs ago. I dont have RA symptoms involving my joints. Mostly PMR. Ive been dealing with this for well over a decade but because of a back injury and surgery I was continually sent around the Ortho circles, finally made it to a Rheumy who made the diagnosis. to make a long story short (may get into those other questions later) i had been improving on a low dose (5 then 4mg)of Pred over one year, a couple months ago my GP wants me to taper off at .5 mg per month. I was doing well at 3-4mg. My leg function declines and the pain in my glutes, hips and legs,feet increased as I began to get to 2mg. After reading every post and comment here I think I was pushing to get off and didnt listen enough to my body and I pushed myself into a Flare. I am pretty miserable right now. it's been a month now. Calls in to GP Dr but no response yet.Appt in another month. I do have an appointment at a good teaching university with their Rheumatology Dept but not till Jan. My question right now is to go back to 3 or 4? mg Pred and then reduce back and stay at 3mg . Last summer I lost so much leg function I could barely climb stairs or walk/shop much at all. Was sent by GP to Neuro who did so much testing all last year and never really found anything. So we're back to PMR. This is such a strange and frustrating and scary disease. This is a great forum, I so appreciate the information and sharing here. Thanks
0 likes, 13 replies
Kdemers gail71461
Posted
Listen to your body. Go back to level of Pred. you need. and then when you taper do it very very slowly.My husband worked up 1/2 ml-gram a week and slowly slowly taper, listening to body all the way Good luck
gail71461 Kdemers
Posted
thank You! yes, I always listen to my body but still tend to push hard. I was doing so well and bam. Learning curve here. Personally for me I made my peace with being on Prednisone I really dont have much side effects on the low dose and Im very sensitive to all medications. I was happy to comply with Dr and excited at getting off. Nope! so grateful I found this forum!
constance.de gail71461
Posted
Welcome Gail! I have roughly the same illnesses as you - Seronegative Polyarthritis and PMR. Started Pred 7 years ago. I had several flares trying to get below 4 mg, in the end I gave it up and have stayed on 4 mg for the last year. I am lucky in that my doctor doesn't push me to get off Pred.
Can't really help, just wanted to commiserate with you. I help myself by buying things that give me an easier life - rollator, wheelchair, mobility scooter. We can't go on holiday any more, or visit family, which is very sad, but we skype and stay in touch.
If you have questions there is usually someone on the forum who will try to help.
Kindest regards from Constance.
gail71461 constance.de
Posted
Hi Constance. Thank You for commiseration! always good to know one is not alone! Our life style has been upended by me for many years now. We even downsized and moved closer to shopping and medical 2 yrs ago which Im really liking now, car rides can be the pits.
nick67069 gail71461
Posted
Generally speaking, when you flare, usual previously good dose is not enough. To take care of accumulated inflammation, one has to add 5mg to existing dose for short time ( few days to week ) and then taper from there. In your case if I were you I would try 7-8mg for few days and see if symptoms go away and then ( if you are at higher dose only for short time) you can drop back relatively quickly to say 3-4 mg and then stay there until you are positive that PMR is under control.
As you probably know, pred does not cure PMR, just control inflammation. If you reduce below the required level of medication, PMR symptoms will re-appear again. There is not reason to push reduction, it only leads to flare. At this low levels of pred, does it really make much difference if you are at 3 or 2mg? Don't rush it , there is no point.
gail71461 nick67069
Posted
Thank You Nick. Im learning so much. I understood PMR and the inflammation and Pred but it's such a fine juggle of the Pred especially at low doses. I went from 4 down to 3 with no troubles and thought this was going to be a cinch. Ha! i have learned this lesson. Back up Ive gone. Respect the Pred. This whole journey is such a song and dance. 3 steps forward then 2 steps back. Thank You.
EileenH gail71461
Posted
I think you have identified the problems and agree you have overshot the dose you need. And nick has already said exactly what I would say: try adding 5mg for a week (i.e. at least 7mg) and see how you get on. If that gets you mobile again you could try less, dropping to 5mg or even 4mg straight off. But you have to clear out the accumulated inflammation that is causing the symptoms.
gail71461 EileenH
Posted
Hi Eileen. Thank You for some confirmation that Im on the right track. Ive mostly been on my own really dealing with this and figuring it all out. Drs around here even though Im in an area that has good health care I'm not doing well finding a good Dr partner. I do like my current GP she has been helpful the most so far and taking this so seriously but obviously not understanding the whole deal. this is a great forum! thank You so much!
anne28129 gail71461
Posted
HI GAIL
I undertsand how you are feeling. I too suffer with PmR and GcA
I managed to reduce ti 3mg but had a massive flare up. The doctor, after seeing my blood test tesults, put me up to 10mg . AFTER 3-4days I started to feel better with much less pain. Over several months I have tapered down to 5mg. The ladt two weeks havent been too good so Im waiting for my blood results!
You cant rush with this nasty disease . I hate taking the steroids but without them I wouldnt be sble to function.
I hope you are soon sorted out and steroid free!
gail71461 anne28129
Posted
Hi Anne! Thank You for your response. All input is so helpful in figuring this crazy disease out. I had no idea about the relapsing big Flares from too fast a taper. I get it now! wow! Prednisone is my Best Friend right now so I'm just gonna take it easy with this and take all the time I want. Thank You again!!!
gail71461
Posted
Thank You all for your great responses!. Im so Grateful so have found this Group! Ive copied the Dead Slow Taper too for when "I'm" ready, not Doc. Im already in my happier place having re-upped the Pred. Relief! Thank You again so much and I have more questions coming for sure!
Anhaga gail71461
Posted
I will confirm that to go up by 5 mg is good advice. I tried with a flare to manage with a smaller increase and after messing around for a couple of months gave in and went up by 5 after all. It meant it took longer to tame the flare and I ended up taking more pred over all than if I'd bitten the bullet and taken the extra 5 (for a total of 7) at the beginning, After taming the flare it took two years before I was able to start tapering again. I would try every so often and it wouldn't work. Patience they say is a virtue. With PMR it is a necessity!
Michdonn gail71461
Posted
Sorry to welcome you Gail to our club. Listen to your body and do not rush your taper. It is not a race, in the long run slow controlled taper will use less Prednisone. Good luck on your journey, try to stay active, positive and smile it helps. 🙂