Hello, and thank you for all the information and support I've gathered here over the past 8 months. So happy I found this site. This is finally my first post!
I was diagnosed with PMR 8 months ago, February 1, 2018. I started at 15 mg Prednisone, and have had a pretty smooth ride, other than 8lb weight gain and mild bloating, until getting to 4.5mg. This is the first dose where I've reduced by less than 1mg, thanks to the advice I've found here. Once I was at 9mg I reduced by 1mg per month, but stayed at 5mg for 6 weeks (although my rheumy recommends cutting by a full mg every 2 to 4 weeks), and 6 days ago reduced to 4.5mg. By the second day I was having severe lower stomach pain, reduced appetite, mild fever, head sweating, generally feeling unwell. None of the PMR pain and stiffness. Stomach pain is improving, other symptoms the same. I'm assuming these symptoms are from the reduction to 4.5mg.
Should I see how it goes for a few more days, or is this my body telling me to go back up to 5mg? Or do you tolerate some unpleasantness with reductions?
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Heidi_SF
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Heidi that seems like a fairly severe reduction to me. You’ve been doing so well. I had a recent flare at 3.5 but I’ve been too impatient myself. Still I’d never reduce by more than 0.5 mg when the dose is that low.
Your pains maybe are steroid withdrawal rather than PMR. I’m sure the experts will be here with some sound advice soon. X
Once I got down to 5mg I did decide to reduce by 0.5mg for the remainder of my treatment, but next time will probably use the slower "Dead Slow and Nearly Stop" method I've seen on this site, since I am likely having withdrawal symptoms.
Or maybe you've had a minor bug? I'm not sure if it could be possibly be adrenal insufficiency. That can cause severe fatigue and maybe abdominal pain. If it goes away I'd suggest staying at this current dose longer than usual and definitely using one of the slow taper plans from now on to make sure your adrenals have a chance to catch up with each reduction. From personal experience I can say for some of us this can be a very slow process! If you keep feeling ill for much longer it could be that the adrenals need you to be at 5 mg. This is a dose which some doctors like to keep their patients at for many months as they feel it makes the rest of the taper easier.
A number of thoughts occurred to me. There are a lot of viruses about with the weather change, so you could be acutely ill. Most of all though, your tapering has been so rapid. PMR can last for years, it rarely goes within one year. Therefore you could be experiencing a return of symptoms that tend to get worse, as time goes on and the inflammation takes hold again.
I was diagnosed in March 2016 and have just managed to get to 6 mgs. I do recognise abdominal symptoms and sweating, nausea and dizziness. I have put this down to my body needing more Cortisol than it’s getting and my Adrenal glands being deficient in producing it. This was confirmed by a recent Synacthen Test. I am putting up with it, in the hope that it will improve. It’s normal to have some discomfort when tapering ( I’ve been a bit of a wimp in the past). At your stage I might be more inclined to take extra Pred. particularly if pain joined the party. I might also ask for a Synacthen Test to make sure all is well.
It is nice when someone comes out of the shadows to talk to us. Welcome Heidi! Let us know how you get on. You might be incredibly fortunate!!
I guess my easy-taper luck has run out at 4.5mg. My rheumy told me to expect to be on Prednisone for 9 months! Doctors here in the US give PMR a much shorter duration. So odd.
I was diagnosed in 2014 and started at 30mg and am now at 4mg. I've learned the hard way to STAY on pred for many weeks before weaning to the next dose. Also, learned the hard way that there are adrenal symptoms and not necessarily PMR. I've also been diagnosed with rheumatoid arthritis and now having knee pains. I'm considering going back up to 5mg to see if I feel a difference!
More pred does 2 things: it will replace the amount of cortisol you haven't got naturally and it will suppress the amount of extra cortisol the body thinks it needs. So taking more pred will dissuade the return of adrenal function if that is what you hope for but probably make you feel better.
There is nothing that will prod them into wakefulness except the prescence of not enough pred and a functioning feedback system - both of which are needed.
Oh right. Thank you. A waiting game then if things are a bit "slow". How does this differ fro the situation where you need to take hydrocotrisone or something - is that only in dire cases?? If you know what I mean.
HC has a shorter life in the body - so there will be more time where the body doesn't have steroid present kidding the adrenal set-up there is enough there so they needn't bother. So a lot of doctors are of the opinion that it is more likely to encourage the return of adrenal function as a result.
That's fine in a lot of cases but in PMR we often still need the pred to manage the symptoms for 24 hours - the HC effect is much shorter so you would need higher doses and more per day. Without PMR to take into consideration, HC is used as a dose in the am and another in the pm as a replacement therapy, like thyroid medication or insulin, and taking it like that is a close mimic of the way the adrenals produce cortisol: most in the morning to get going for the day and a boost in the afternoon.
You have done very very well to get to 5 in only 7 months. I suspect your current symptoms may be from adrenal issues. Below 7 mgs or so our own adrenals have to start to kick back in, wake up from their prednisone induced sleep.
Search the site for waking adrenals. There is a good summary In this article. Www.cssassociation.org Reducing Steroids while on low dose and activating the adrenal glands. By Marian Mesker
Welcome to you Heidi.You do seem to be on a rather rapid taper ,it's probably a bit of a shock to your body!9 months to be off pred,that seems so fast!!.Do you take anything to protect your stomach from the pred.eg omeprazole?
Thanks, I'll talk to my rheumy about meds for my stomach when I see him in November. I got the impression he felt it would be a smooth journey. He's very young, maybe not much experience with PMR. My stomach is gradually improving.
My Dr. also rushes the taper and implies that PMR is not a big deal! I’m decreasing from 4.5 to 4 and do 3 weeks per drop. Stick with the dose and decrease a bit longer and see if stomach problems are unrelated to PMR. By the way, I’m no doctor!
I have had issues with every drop... but they always seem to settle within a couple of weeks. I am currently in the process of dropping form 4.5 to 4 and i have been doing it on a very slow method, currently I take 4.5 mg one day, 4mg for two days, then 4.5 again etc...and it seems to be working. Might be worth trying 5mg and 4.5mg on alternate days for a week or so and seeing if that helps... and then working down from there. Good Luck.
Yeah, I feel I've reached a point where I really need to slow down with my reductions, the way you're doing it. I never imagined going from 5mg to 4.5mg would be so dramatic! Good luck to you, too.
Interesting to hear about symptoms/ drop. It’s been a joke around here for sometime that every drop brings different symptoms. Once I got to 10mg, I reduced by 0.5mg on the DSNS system. Each 0.5 was an adventure. Starving hungry one time, full of bounce another (I enjoyed that!). Sometimes, in that first week or so if the taper, I’d get enough joint pain that I’d go back up to the one before the previous for a week, then come down to where I’d started the drop from and try again.
Once I got to 7mg I started going down in 0.25mg steps. It seems as though I have to do the up and down thing more regularly now - introduce the topic, let my body consider the idea, then have another go. I normally leave a couple of weeks between jumps to get settled but this time, I am not enjoying the side effects at all. I’m feeling very anxious and depressed and also eating in an uncontrolled way on 6.25mg. I think I’m going to start the next drop in a week instead of two and hope that it’s the pred doing it!
Quite entertaining working out the logistics of the drops. Especially when I’m nearly running out of pills. 6.25 offers a choice of a 5mg plus a quarter of a 5mg or one and a quarter 1mg. 6mg will be relaxing - just two tabs straight out of the packet 😂
I started pred 3 years ago in September 2016. They pretty much leave me alone now to get on with the reduction. I reckon it will take as long as it takes. My whole aim is to avoid flare-ups while reducing.
That is the idea behind the DSNS reduction plan. You offer the new dose up for consideration just one day at a time at first - I found I noticed it for the first 3 or 4 times but then it was as if my body gave up and by the time I finally got to just beyond alternate days old/new I felt better on new than old dose days and could jump to every day new. In the test phase I only felt "strange" for one day at a time and knew tomorrow would be OK. Suppose it's a bit like dieting using the 5:2 approach - tomorrow is always an eating day!
Yes - sometimes I can go straight through DSNS but more and more I have to do Make the Introduction and come back in a couple of weeks to go into the full thing. Maybe I need to do the first time at 14 days then 7 days, 6 days etc
It sounds as if your adrenal function hasn't kept up with the speed of your reductions - which there is nothing wrong with the speed as long as you take notice when your body rebels. I would go back to 5mg (at least) and wait a month or so before trying again. You have got to a low dose very well and it would be a shame if it got spoiled. One top PMR rheumy likes to keep patients at 5mg for some months to let your body catch up and ot does seem to make the rest of the taper easier.
Thanks PMRpro! I've learned a lot from you over the past few months.
Today is day 7 at 4.5mg. Stomach pain (actually lower intestinal) is much improved, this is the first day with no low grade fever, first day with no head sweats. Generally feeling better. So I'm wondering if I should stick with 4.5mg for several weeks/months. Even with the improvement over a week at 4.5mg would you still suggest going back to 5mg? Saw your earlier comment about doc suggesting a 9 month plan. Especially now that I've experienced what a difference going from six weeks at 5mg to 4.5mg, in the future I will alternate new doses with old. If the doc thinks I'm out of my mind I'll get someone else. It's clear he thinks PMR is no big deal.
At the end of any reduction step you shouldn't feel worse than you did at the start. If you do - there is something wrong and it probably pays to go back the last dose you were good at and wait a month. And a slowed down approach is ALWAYS good. At least alternate the 2 doses for a few weeks - even slower is even better...
If it isn't too much of a pain to do 4.5mg and you feel OK stay there - it may only be 1/2mg but that makes a significant difference.
"No big deal" only because "it doesn't kill us". When a locum said that to me during a discussion why my gp had cavalierly told me at 1.5 to use up my tablets, stop and see what happened, I said, "But sometimes you wish it would" she seemed quite shocked. But really, it can make you feel so wretched and life is so hard to live with untreated or flaring PMR.... It is a big deal to us. Our disease is bad enough and the medicine is not an easy one.
I haven't had a flare yet but would hate to relive those miserable few weeks before starting pred. Getting dressed was especially challenging. Or rolling over in bed! Don't want to go there again.
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