I've had PMR for a year and five months now and rather than being able to taper I've had to increase my pred dose from 7.5mg to 10mg over this period. I read about so many people on this site who are able to reduce their dose after relatively short periods of time and I'm finding my situation a little bit discouraging. I feel like I'm going backwards.
Also, I have a further question regarding pred dosing. I had a bad day yesterday where I felt an increase in the stiffness in my shoulders and pectoral chest muscles bordering on the pain that I used to have. I have been pretty well controlled up to this point with only stiffness and fatigue being my primary complaints, but I lost a lot of sleep over the past several days with my chronic insomnia and I think that brought on this elevation in my PMR symptoms. So here's the question: can I increase my pred from the 10mg/day I'm taking now to, say to 13 or 15mg, to reduce this acute PMR attack and then drop back immediately to my steady-state 10mg without having to taper back to that level? Also, how long can I stay at a higher dose in order to deal with an acute attack without having to taper to my previous, ongoing dose--a week, a couple of weeks, etc?
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Ozark
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Looking back at some of your earlier posts I think your problem probably relates to you reducing too quickly initially from 15mg to 7.5mg.
You say you did this because of anxiety attacks, and I can appreciate that, but somewhere during that reduction you have lost the real reason why you are taking the Pred - to control your symptoms. I know it’s not a nice drug, but there is no point in reducing too quickly and going below the level you actually need.
You should be reducing slowly to find the lowest dose that gives you the same relief as the initial dose of 15mg, and if you reduce too quickly you take the risk of going below that dose without realising it.
If the rise from 7.5mg (which is a very difficult dose for many people - Adrenal glands need to start working again) to 10mg didn’t work, try 15mg for a week. If you get relief from that, then I would suggest you drop to 12.5mg for 2 or 3 weeks, if still okay, then down to 10mg.
Stay at 10mg for a least a month, maybe longer, then reduce 1mg every couple of months. You may be able to do every month, but maybe not.
Your PMR is less than 2 years - plenty of time to go yet! I think the fear of Pred is making you try and rush things - you can’t! ...and don’t worry about what other people are doing.....just do what your body tells you to do.
Thank you very much for your reply. In the beginning I did drop very rapidly from the initial dose of 15 mg to 7.5 mg and I stayed there for months and then gradually crept up to my current 10 mg dose. 10 mg does seem to control most of my symptoms fairly well though not completely. But as I expressed in my initial posting, occasionally I have a bad day or a bad series of days where are some additional pred might be of use. Your comments are appreciated and I will take your advice regarding short-term increases in pred to deal with these bad days. Thank you again.
No don’t keep going up and down. This advice is for this situation only - hopefully to get you on an even keel, then you reduce slowly and sensibly- that way you SHOULD be to taper as recommended.
Every time you yo-yo it makes the whole thing more difficult in my opinion.
Sometimes , especially winning the race with PMR/ GCA it is better to act like a tortoise than a hare.
You could just increase for a short time to cover the flare , but reading your last post Dorset Lady is spot on. You hadn't actually got your PMR pain under full management because you began tapering too early and too quickly. Getting off Pred became your priority rather than managing PMR and Pred in a way that helped you live with less pain while balancing your other side effects.
I completely understand , why you tried , anxiety as a side effect is a big one to take seriously .
But I will give you the tip that , although steroids can increase your anxiety , having to deal with the pain and fatigue also increases stress and anxiety too.
Increasing your dose , why not increase up slowly too , from 10mg to 12.5mg for a few days , if you are still struggling but nearly there on that dose , do a few days at 15 mg then reduce down to the 12.5 and stay on it as DL recommends for a while so you give your body time to start to repair and rebalance itself . Then slowly taper down.
If the steroids are the full cause of your anxiety and insomnia you can get other help and techniques to help you balance and cope with it , non drug as well as drug based , while needing to use steroids to keep inflammation under control while you have PMR.
Because remember are not a cure , there isn't one , steroids help you cope with the pain.
Getting your PMR under control in the long run will stop the vicious circle of pain then anxiety or anxiety and insomnia making more pain etc. Etc. that comes from struggling with pain.
Take care and keep asking for help , not just drug based , but maybe put up a post asking for other PMR sufferers advice on the tips or support they use to deal with the increase of anxiety or insomnia they have had with Pred/ PMR too.
Dorset lady has highlighted the tapering issues I would have mentioned.
As a chronic insomniac myself I can say that there is no doubt that sleep deprivation has a massive impact in my PMR symptoms. I had a 6 week period up to just after the bank holiday, where I either didn't sleep at all or had 2 to 4 hours maximum. I was bedraggled by the end of it. Then I decided I needed to stop worrying about sleep, detoxed for a week off the sleeping pills that were obviously not working. I then started sleeping pills again and have slept 5 to 7hrs most nights. I did do 2 days at @10mg from 6mg last weekend. First day by accident, 2nd day by design. Between the sleep and 2 days of @10mg I feel better than I did that's for sure. I went back to 6mg then. I am 3 years in and take a steroid sparer/dmard. You must be kinder to yourself with the tapering. As others would say what the point of taking less pred than you need. You are taking it for no reason. At 6mg I think I am taking less than my body would naturally make ...a minus 1ish status ifyou like. If you go back to 15mg, in my mind, you are at around 8mg. That's helping your system out at an early stage relative speaking. You are trying to push yourself into minus status. Fingers crossed you get sleep.
Yes, Dorset lady did answer many of my questions regarding increased dosing and tapering. I agree with you that's sleep loss is really an exacerbating element in dealing with PMR. I have been a chronic insomniac since I was in my mid-to-late fifties and I'm now 75. Have been taking the sleeping medication Lunesta which has become increasingly ineffective. Like you some nights I will get maybe only four or five hours sleep. I wake up intermittently throughout the night. It really is an issue and I do not need on top of dealing with the PMR, but of course I have no choice and must just soldier on, as they say. I will try increasing my pred dose by several mg as needed to deal with momentary increases in pain and stiffness. This disease has a mind of its own and is quite variable from day-to-day and even from month to month, sometimes better and sometimes worse. I want to thank you as well for taking the time to offer me your thoughts and your response.
I am a really bad sleeper and get around 4 hours per night. If you need something to help you sleep you could see your pharmacist or gp and see what they suggest.
I am currently taking Lunesta for sleep but after many years of taking this drug I believe it has become mostly ineffective. Perhaps I should stop for awhile if I can and then see if the sleeping medication has greater effect. Thank you for your response.
I already do unfortunately to no effect for me. I take about a gram of calcium per day along with vitamin d. Trying to avoid a fracture resulting from the steroid usage.
I listen to Radio 4 Extra - it lulls me to sleep. Also one of my GPS comforted me with the comment that I may not be sleeping as long as I may like but I am resting which is no bad thing..
My gp upped the dose of amitriptyline that I was already taking for depression to help with sleep. Lots of people on the forum use a low dose of it to help with sleep, maybe your gp would be prepared to let you try it.x
Hello Ozark. I feel for you at your current stage. I may be wrong, but twice I. This thread you mention increasing dose temporarily by several mg as needed to deal with momentary increases in pain and stiffness. Can you take another look at DL’s first reply again, as that is not what she suggested. Sounds like you will be yo yo Ing around which is not what she said. She said go up to 15mg for a week. If that sorts things go down to 12.5 for 2 to 3 weeks and then down to 10. Stop there and then start slow taper down.
My concern is you sound as though you will be trying going up a few mg when you have a bad day and then back down again. Sorry if I have misunderstood.
You did not misunderstand. But what I am currently doing is going up gradually overtime to see what my best dosage is. I'm currently, just in the last day, at 11 mg of pred and I intend to stay here for a while as, at least so far, that dosage seems to be working. Thank you very much for your reply and thoughts.
You are right to consider changing your sleeping medication if it has become ineffective.
I don't know which dose you are on but after watching a documentary of insomniacs ( yes I am looking for help too) a warning point I got from one of the test subjects was , as with all drugs , sleeping medication should be tapered off too as it can cause bad withdrawal symptoms after a long term use. You don't want drug withdrawal kicking off a flare in PMR pain .
It is probably a good idea to discuss the change in sleeping medication properly with your GP. Get a script for a lower dose of your current medication or sort out a taper with supervision. Discuss what options you have for a different sleep medication , there may be one you have not had before that is more suitable for your needs now , that is more suitable while taking Pred.
It might also be an idea to see if you can be referred to a sleep clinic or get some advice on Cognitive Behavioural Therapy to help you find a better sleeping pattern.
The added sleep will definitely benefit you're so of side effects and pain.
And always feel free to sleep when you need and you can not just when you think you should , suprisingly another technique used in the sleep study with positive effect.
I have been on 3 mg of Lunesta per night. I am currently trying to cut back and eventually remove myself from the use of this drug. I am reducing the dose by cutting the pill in half, then in quarters, and then taking the quarter and the half. Subsequent to this, I will take just the half for a of time, then the quarter tablet, and then I will try to quit entirely. So I will be doing a slow taper using this method over a period of weeks. And yes, I do sleep when I feel the need rather than adhering to a strict sleep regimen.
I will just have to see how all of this works. In the meantime, I have increased my dose of prednisone to 11mg per day which has produced results to good effect.
As an insomniac, periodically, tried Lunesta which had no effect on me, did not increase it as I don't like to take medications. Now I try to help the problem by studies relaxation one joint at a time and clearing my mind. Both are hard to do and take practice. Once in a great while I take a Zanax.
Hello Ozark! The beauty of this site is you can always find someone just like you or, unfortunately, even worse. I have had PMR since May 2017 and for the first 20 months or so thought it was a breeze and that the pred dealt with it all so easily and I would be over it in 2 years. Not so!! Around 2 months ago it was like the pred stopped working and I put myself back up to 15 mg (from 9 or 10) just to get a near normal life. It was just like it was back at the beginning! Very discouraged!
I am now on methotrexate ( a steroid sparer) to ty and taper down some but, so far, to no effect. The MTX makes me VERY tired. I saw my lovely GP this morning and she said the MTX may take a month or so to work so we shall see as it's been a month. Keep positive and know you are NOT alone.......
Thank you so much for your thoughtful and generous comments. Seeing as how I live alone and no longer have any family alive, nor do any of my friends really appreciate the nature of this disease, having the support of people on this website is extremely meaningful to me as there is no one else around me who really understands. So thank you very much for your interest and your comments. It means a lot to me as I travel this PMR journey.
I have that CBD oil, with no thc (no high) really helped my anxiety brought on my reducing. 5 drops under my tongue. You can search here for threads that discuss it.
"I read about so many people on this site who are able to reduce their dose after relatively short periods of time"
I promise you, they are in the minority. And what Dorsetlady and Bee say is very very pertinent. If you overshoot with a speedy reduction at the start it often does store up trouble.
I probably did overshoot in the beginning which was way back in February of 2018. I initially was on the standard starting dose of pred of 15 mg, but this caused, within 3 days, such an extreme anxiety attack that I reduced the dose by half. Interestingly enough, that 7.5 mg dose was sufficient, surprisingly, at the time and I continued with that dose for at least 9 months. But after sustaining a rotator cuff injury last August in my left shoulder, and for whatever reason, I found that my PMR pain also increased accordingly, and I have continued to gradually increase my pred dosage to my current 11 mg dose, which I just started the other day. That dose may be the sweet spot for me. It will take a few more days to find out. My fear all along with every increase in my pred dosage has been the inducement of the long-term side effects of steroids. This has been what has prevented me from perhaps being more aggressive in treating the discomfort I've experienced with PMR. It has always been a trade-off with me between what I could endure and what I feared in terms of side effects from the long term use of corticosteroids. But I've finally been forced to elevate my dosage in order to relieve my discomfort. Perhaps I will pay for this in the long run but I have to live now. Maybe in a few months I will be able to reduce the dosage somewhat assuming I'm still able to remain relatively pain free.
If you still find taking steroids cause too much of a struggle for you but need the extra pain relief this is definitely the time to discuss this with your GP or Specialist .
As with other people with various issues taking steroids , they may be able to advise you on beginning an appropriate steroid sparer to help you cope with the pain at a dose of Pred below that which you probably need ( 15mg or over ) but you cannot for whatever reason take.
You have been on steroids long enough , and have had enough side effects during that time to present the argument to any Doctor that it is time to add a sparer into your drug combination if you are going to be able to get control of the pain and be free of some of the side effects that cause you most concern.
Definitely make that appointment it will make everything alot clearer for you and that in itself will help with all your symptoms , PMR based , anxiety and the insomnia .
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