Posted , 10 users are following.
so i increased my pred by 5 mg. if it is a flare up approximately how long before i start getting relief? After calling my doc for two days, they finally called me back, didnt hear the phone, but they did leave a message " call us monday and make an appointment" great!
0 likes, 11 replies
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EileenH exie61964
Posted
It depends on whether it is a flare because of overshooting the dose you need during a reduction or whether it is a flare because of increased activity of the underlying autoimmune disorder. If it because of overshooting you should notice a difference within a few days - if it is an increase in activity you may not, it will depend on how much you need for the new level of inflammation.
Joannamary EileenH
Posted
Hi Eileen - so is there really no foolproof way to distinguish between the 2 types of flare? I have certainly noticed that if I get one, it's no good just backing up the .5 or 1mg to the previous dose where I felt OK - which is what I've been doing till now, when I read about the 5mg increase.
How long should you stay on the 5mg increase, and how long should you take to reduce back to the Dose That Worked?
It's probably obvious that I've been struggling with a flare for about 3 weeks, - on 13mg I was fine, on 12 symptoms beginning to creep back, 11.5 was horrible, back to 12 for the past 10 days and its getting worse. I think I will put it up to 17 but advice would be very welcome!
EileenH Joannamary
Posted
If going back to the previous dose doesn't work and you add 5mg then often just a few days is enough. If you are on the higher dose just for up to a week to 10 days, you can probably drop back to the previous dose you were OK at in one. If that previous dose then turns out to be not enough it is likely it is the increased disease activity sort of flare. But really that is the only way to tell. In that case you would need to reduce slowly like you did before.
And yes - that does sound like a "disease activity" flare - not sure you need to go up to 17 though, if you were still OK at 13 stay there for a few weeks and then try again. I've been in a flare since the autumn. To start with I was doing fine on 9mg but then the cardiac stuff I get needed 15mg pred to stop them - I can do a few days at 14 but then the atrial fibrillation starts up again so I go straight back to 15 again. But the other PMR stuff is there in the background too, especially the hip bursitis.
Do you mean you get them often? Mine tend to be every couple of years, almost always need to start at the beginning again and it is a few months before I can reduce far if at all.
Joannamary EileenH
Posted
Thanks for that Eileen - I've found that just going back to the last dose that worked doesn't seem to cut it so I'm going up to 15 for a week and then back to 13.
I have AF too and hadn't made any connection with prednisone dosage, but I'll be aware of that from now on! I'm sorry you've had to go back up again.
If I look back on the last few months, it's been pretty chaotic...flare, put up the dose, taper the dose, flare...practically every month - and I've been doing the tapering very slowly. The only thing I can think of that I might need to change is how long I stay on a dose which is working, before I start tapering again. I started on methotrexate a few months ago, - it was supposed to help me reduce faster - but the trouble with that is, there's no way to tell if it's working at all. Certainly there has been no improvement in anything since I started it. And until I started folic acid 6 days a week instead of just 1, my hair was falling out and looked like candy floss (just not pink!)
EileenH Joannamary
Posted
That sounds to me as if you are trying to force down to a dose that is simply too low. And that the mtx certainly isn't doing a lot - yet at least. That is what would happen to me if I tried to taper further.
I had candy floss hair with Medrol/methyl pred - only I thought of it as a brillo pad! I wonder if starting on every day folic acid right from the beginning might stop the agony of clumps of hair falling out? Did you have a fatigue problem with mtx? Did the folic acid help that?
Joannamary EileenH
Posted
I didn't notice any changes at all after I started mtx in April last year - except shedding, splitting and thinning hair. ( I've had fatigue pretty constantly anyway). Only when I complained about no sustained symptom improvement plus hair loss, did the regime get changed to weekly mtx injections plus folic acid 6 days a week. (The injections are meant to avoid some mtx being lost in the gut). The new regime hasn't produced any improvement in symptom reduction or flare reduction, but my hair immediately stopped falling out and is gradually improving in texture.
I think when I next get a rheumatology clinic appointment I will propose going off the mtx as a trial to see if it's actually doing anything. I don't like to bag the medical profession, most of them are great, but to be honest, reducing the prednisone seems to be the main thing on the rheumatologist's mind, rather than my quality of life.
EileenH Joannamary
Posted
Yup - a common complaint! They diagnose us with a disorder where the only form of management is long term pred - and promptly start to rush us off it! Of course, the early work claiming PMR only lasts 12-18 months doesn't help! The most recent stuff is far more realistic at an average of just under 6 years:
https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings
Michdonn exie61964
Posted
Hi Exie, I think that we are all different, normally I have been able able to notice a improvement in a couple of days. Not so with my current flare, jumped from 5mg to 10 to 15 and now finally to 20 mg, yesterday and today I have relief. Depending how I feel will determine how long I stay on 20, I hoping 3 to 5 days and drop to 15 mg. In the past I have been able to get relief and control with a less aggressive increase. Still smiling and thinking positive 😊
exie61964 Michdonn
Posted
mich, thank for your imput. i learn something new everyday. good luck!
Michdonn exie61964
Posted
Hi Exie, I agree, consistently the only thing my Rheumy talks about is getting off Prednisone. I just had a bad flare, increased my dosage from 5 mg to 10 to 15 to 20 mg. She asked two question, any sign GCA and when are you going to start reducing, got to get you off Prednisone. I do wish each Rhemuy could have a day of PMR and Prednisone side effects. Then maybe they would be helpful. We have to stay positive and continue down our bumpy PMR journey, with a smile. ☺️
exie61964 Michdonn
Posted
i have the same wish. lol maybe just for a short time my family got it too. wink wink
my kids, 46 and 48, dont seem to understand the ups and downs of PMR. i hate this!
THANK YOU ALL FOR HELPING!