Posted , 14 users are following.
I was just diagnosed with PMR a week ago. I was put on 20mg and started taking that 3 days ago. How long does it take for the steroids to start working, and once they do start to work does the pain ever go away completely?
0 likes, 20 replies
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lynda62707 Dennis123
Posted
Hi Dennis, I too was dx w/pmr about a month ago
(although I'm beginning 2 think it may be GCA instead😖
. I was put on 15mg initially and literally felt relief within hours! Since then, it's been a real "rollercoaster ride" as I'm bound and determined 2 get off pred as soon as possible! So far, not working too well.
EileenH Dennis123
Posted
It depends - I took 15mg of pred and had a minor miracle in under 6 hours - I could move normally for the first time in years! It was perhaps a 75% improvement - the rest of the deeper pain took up to a few months to fade. Others may need a few days, even a couple of weeks to get a really good result. And a few may need more than 20mg, the top of the starting range of doses is 25mg and if 20mg isn't cutting it, 25mg should be tried. If that doesn't work - there has to be a query as to whether it really is the PMR we discuss here. PMR is just the name given to the set of symptoms - there are several possible underlying causes which must be ruled out.
Whether the pain goes away completely also varies - some people are pretty much free from pain, others not so good. Providing the starting dose is high enough the relief of pain should improve over a few weeks, if you have a lot of bursitis it may take longer. The best level of symptom control you achieve with the starting dose is your guide - as your taper that shouldn't get any worse. If it does you have reduced the dose too far and you need to go back to the previous dose. That is why the steps down shouldn't be too big - 1mg at a time is ideal, not more than 2mg at a time.
With time you will learn what you can manage - but you also need to do your bit. Your muscles remain intolerant of acute exercise and will be sore after doing far less than you are used to - you have to learn to adjust to that with lifestyle changes, pacing and resting. Your muscles aren't able to signal you are asking too much of them and having developed post exercise muscle soreness they will take much longer to recover.
EileenH
Posted
susanjeanne EileenH
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When I drop below 4 mg. I’m back where I started and VERY fatigued. She feels that fatigue shouldn’t really be considered a symptom of PMR. I am seeing another doctor next week.
lynda62707 EileenH
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Eileen, I so appreciate your lengthy answers. They're really starting 2 educate me! Please continue 2 post. You are becoming a "life line" for me!
gail39791 susanjeanne
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susanjeanne,
I was in your shoes and told 1 year (can you believe it!) was the typical course for treatment, and 1.5 years was max! I am so grateful I found this site and realized 1 year is not typical at all! I believe it may have been EileenH that told me in the U.S. patients are given that short timeline and in the UK patients are told the average duration is much longer.
Fatigue is definitely a symptom as everyone on this site knows very well. For me it was very black and white. If I started a taper too soon after the last taper, or if the reduction was too great, within two days I was fatigued to the point I would be dragging and could barely push a grocery cart. Once I was freed from the rigid taper schedule, which was not working for me at all, I was able to taper successfully with minimal flares and fatigue. Listen to your own body. What good is it to be on a schedule that doesn't work for your body?
I wonder if sometimes doctors don't really understand what we mean by fatigue? It's not like we just can't go dancing tonight because we are tired. Likewise, it is not the type of tiredness the doctor herself may experience after a long day at work on her feet and possibly continuing to work at home cooking, doing chores etc. She may be thinking to herself "I'm tired, too!" When I heard my doctor giving me that same type of feedback, I painted a picture for him as to what the fatigue is like. It's like I can't walk in a grocery store without leaning over the cart for support. It's like I sometimes feel my arms are too weak to pull up the comforter on the bed. It's like I need a nap after showering before I can use my arms to blow-dry my hair. And...when I have the right amount of prednisone, I can ride a bike and take a long walk and push a vacuum! We are all so acutely aware of what our particular symptoms are that come along with a taper or a flare. If your doctor isn't on board, find another one. Some people even use an internist instead of a rheumatologist to prescribe their prednisone - so you are not limited if you are in an area with few rheumatologists.
One thing to remember is that once you get to the lower doses, your percent reduction is greater. Going from 5 mg to 4 mg is a 20% decrease which was too much for my body. I ended up reducing by 1/2 mg at a time instead. You are the best at knowing by how much and how soon works for you. Be sure to advocate for yourself because in the end, having a successful taper is much better than a yo-yo effect where the taper is too fast, it fails, you have a flare, and end up going back to an even higher dose.
Wait until you feel the best you have felt while on 5 mg and then you could try 4.5mg. Also, I have found it best to pick a week to start the taper when I can limit strenuous physical activity and stress. Be good to yourself when you are tapering! You could even consider reducing by .25 mg at a time if the .5 doesn't work. That would require using a liquid prednisone to obtain .25 since you can't really cut a 1 mg pill into 4 pieces. I have done this myself when I got down to 3 mg. - and it worked! (Dr. reluctantly agreed, but wrote on the Rx "as per patient's request"
Best of luck!
lynda62707 gail39791
Posted
Omggg! Thanks sooo much 4 your post! I can completely relate 2 Everything you said! Let's all keep on truckin' and keep in touch. Thanks 2 you all! You're the best.
EileenH gail39791
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I don't know about the UK being more realistic - some doctors may be but we still get the 2 year rubbish!!! But I think you are right - it is worse in the USA. We had some retired doctor who was obviously bored and thought he'd join us a a resident medical expert. Informed us that PMR only lasts 2 years BY DEFINITION. You can imagine the reception he got! He persisted for a few posts but mercifully gave up in the end!
marg44743 susanjeanne
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Marg
marg44743 EileenH
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lynda62707 marg44743
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rhea28447 Dennis123
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I was diagnosed last summer, and started on 15 mg or Pred. I was told that I would feel relief very soon, (within hours or a few days),and if I didn't, my nurse practitioner would look for another diagnosis. I'm currently on 5 mg, with hardly any pain. But everyone responds differently. I was quite adverse to taking prednizone, but it's actually quite amazing how it takes care of PMR pain. And from what I've read, there are very few side effects of low dose pred. All the best to you!
ptolemy rhea28447
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diana21296 ptolemy
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ptolemy diana21296
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