Taper issue-.did I handle this correctly?
Posted , 12 users are following.
AGE 77 PMR diagnosed 2015. I have been tapering 1/4 mgm trying different intervals. The last was new dose after 4 days. Taking 6 3/4 mg quite comfortable but more fatigue. At 6.5 started to feel unwell but also a intestinal disturbance and extreme fatigue. Increased pred 1mgm for 3 days then today back to 6 3/4 increasing duration to 5 days. I am also doing PT which gives me short term assorted aches. Any discomfort removed by acetaminiphen.
Any ideas?
0 likes, 13 replies
EileenH karenjaninaz
Posted
Just to remind you that you aren't reducing relentlessly to zero - you are looking for the lowest dose that gives the same result as the starting dose achieved. It doesn't matter how slowly you reduce - both in terms of time and how small the steps are - you won't get below that dose without symptoms returning eventually. It sounds to me as if you have got there - for now at least. It doesn't mean you won't get lower - just not yet. Take a few months holiday from reducing and then start again, it may work next time.
The dose you have got to is in the range of the amount of natural steroid produced by the body in the form of cortisol - really not a lot to worry about.
karenjaninaz EileenH
Posted
THANKS EILEEN,
-I WILL FOLLOW THIS Sensible PLAN.
EileenH karenjaninaz
Posted
And do you use the Dead Slow approach????? It works!
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
karenjaninaz EileenH
Posted
YES, Eileen I've been using that method exclusively but tried varying the length of time on the new dose. This is the first time I hit a snag on the 4th day new dose. The previous reductions were fine- I usually dropped by a 1/4 mgm most of the time except at the very beginning since 2015. Once in 2016 I went back to 10 after a death in the family- FELT LIKE I WAS FLARING THEN. That was the only other time I hit a real snag.
EileenH karenjaninaz
Posted
Then I think you have to accept you have arrived for now. You will get lower - just not yet.
reggie92967 karenjaninaz
Posted
I have had terrible chronic fatigue too, since my diagnosis, 5-years ago. it seems no matter how high they went with the prednisone or how low, the fatigue is there, so tired of it. I was just lowered to 10mg. from 15 mg., took a week to lower by the 5 mg., anyone think that's too fast ? Because I've felt horrible the past week ? When 1st started the steroid, 5-years ago, I got about 3-weeks of feeling like superman, then I fell back to the no energy, terrible fatigue, stiffness, & aching pain. So been on the roller coaster of upping the dose & lowering the dose to no avail. I'd probably be worse though without any prednisone. Tylenol, Alleve , over the counter NSAIDS do nothing for me. I'm on a very low dose pain med. I am so diligent about not over taking or over using, but so sick of feeling like a loser, user, abuser because I need a pain med. as needed. Sick of all the hype, the politicians, & none of them talking about people who absolutely must have something for pain, or they'd, like me, be bed ridden. I also have a very rare Non-Hodgkins Lymphoma, also causes fatigue, but that's very controlled by an oral med. now for 6-years. I'm blessed it works so well. Good Luck Karen.
EileenH reggie92967
Posted
Far too fast - you should be reducing by not more than 10% of the current dose in each step. That was 33%!!!! And wandering up and down the dose of pred just creates problems.
You start with a dose that manages the symptoms well. And then you taper (it's not like reducing, that is different) to find the lowest dose that manages the symptoms as well as the starting dose did. From 15mg the steps are best at 1mg, definitely from 10mg it should be 1mg and 1/2mg from 5 if you get there. OTC drugs do nothing for PMR - they are a waste of money and potential side effects. Pred is your pain relief in PMR - you need the right dose to manage the inflammation and that manages the pain. It may not be perfect but it can be good in combination with lifestyle changes and working round things. And once you get it sussed - life can be pretty OK.
irene_88946 reggie92967
Posted
I am so sick of these politicians blaming drug companies for over doses of pain medications. It's not the drugs it's the people who are abusing the drugs. I too take pain meds it's the only way I get out of bed & have a half decent day. I don't abuse them, never have. Now the pain management doc has reduced my dosage due to all regulations. You are not an abuser you need the pain meds in order to function. Don't let all the hype get to you!!
I am taking methotrexate along with the prednisone. The MTX has helped me tremendously. I haven't had any side affects from it. I am not sure I am reducing the prednisone correctly either. But so far I've only had one flare since reducing since August.
I wish you well . Hopefully we can get off the prednisone for good!!
Michdonn irene_88946
Posted
Irene, a little over three years on my PMR journey, on high doses on Prednisone in had terrible side effects, currently on 3.5 tapering to 3mg and PMR pain free. I will stay on Prednisone as long as I need to, when I was on 30mg and the side effects were driving me nuts, I wanted off Prednisone, now it is controlling my PMR I will stay on it to have a normal life with a smile. 🙂
Michdonn karenjaninaz
Posted
karenjaninaz, it seems to me that sometimes I just hit a level and have had to let my body stabilize and adjust to that amount of Prednisone. I never reduce if I have any PMR pain, reduce my 10% of less and use DSNS method. As a very smart Lady on this forum told me a couple of years ago tapering is not a race. Nice and easy does it. Good luck on the rest of your PMR journey. 🙂
karenjaninaz Michdonn
Posted
THANKS!
Sounds like thats where I'm at.
Michdonn karenjaninaz
Posted
Karenjaninaz, I had several months where I did feel fatigued, but no PMR pain, I pushed myself through that period and have come out the other side. I am a believer in DSNS method and make modifications depending on how I feel getting ready to taper to 2.5, not rushing taking my time. 🙂
Joydeck karenjaninaz
Posted
I also hit a tapering wall below 7 mg pred: for* one whole year*! Three months ago I recommenced tapering in roughly 0.5 mg intervals. I've just reached 5 mg, PMR symptom-free. No DSNS.