I've been reading this wonderful web site all year. Thanks to everyone for all the information on PMR/GCA. I don't know what I would have done for the past six years without your help!
My question is about the best way to reduce prednisone now that I'm down to 5 mg. I got down to 4.5 mg early this year, and now I'm finally back to 5.0. I'm feeling pretty good despite some mild stiffness in my hips that doesn't have much effect on my daily activities. Most of the time I don't notice it at all.
My doctor told me to immediately start alternating 5 mg and 4 mg every day for a month. Then if I feel OK, start alternating 4 mg and 3 mg, etc., until I'm down to 0. My previous rheumy, when I got to 5 mg, told me to stay on 5 mg for 6 weeks and then start reducing to 4.5 (which led to a flare). I'm feeling better this time than the last time I reduced to 5 and eventually 4.5.
Despite what my rheumies have told me, I've mostly been following the DSNS tapering method.
Any advice? These are the options I can think of:
1. Follow my previous doctor's advice and stay at 5.0 for 6 weeks and then taper to 4.5
2. Follow my current doctor's advice to immediately start alternating 5.0 and 4.0
3. Start a DSNS taper immediately from 5.0 to either 4.5 or 4.0.
4. Something else.
I wish this whole PMR thing were not so confusing!
Written by
judyb100
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Personally I would go for option 1, but using a slower taper such as DSNS.
To be honest anything under 5mg is good - no side effect to speak of.....and from now on the slower the better - for your illness and your adrenals glands.
But don’t just reduce relentlessly, only reduce when YOU feel okay....it’s not that confusing if you listen to your body, and don’t get pressured by other people to do something too quickly!
Thank you, DorsetLady! That's what I was thinking My previous doctor also said that once I'm at 5.0 or lower, I don't have to worry about all those pred side effects so much and I can take my time to reduce more. My current doctor wants me to get off prednisone ASAP! Having been reading this web site for the last few years, I feel inoculated against some of the bad advice I've gotten from rheumies.
If it were me I would continue to use the DSNS but maybe even more slowly (do each step twice for example) and only after the 6 weeks at 5mg. Doctor advice no 2 is too fast - at this stage you slow down MORE not speed things up!! It isn't just the PMR that is involved now, it is also the return of adrenal function and it is what YOUR body can deal with. They obviously think that 5mg is a low dose and can't be doing much - there are plenty of people who get to 1mg and are fine - the doctor pushes them to get off pred and back come the symptoms after a month or two.
One very good PMR rheumy likes to keep people at 5mg for up to 9 months - he finds it makes the rest of the journey to zero easier. It is low enough to encourage adrenal function to return but enough for most people to feel good on it. Once adrenal function is waking up you can concentrate on the PMR because if it HASN'T gone, you will still need some pred, maybe as little as 1mg but you still need it. Prof Dasgupta told us a few months ago that he often keeps patients on 2-3mg longterm as it reduces the likelihood of relapse. Or in other words - actually PMR last a lot longer than they like to admit ...
Hi I got stuck on 5 last year and had to go up for a bit to 8 mg earlier this year,have since been able to reduce by doing the DSNS way twice or even 3 times over.I look at it that as long as I am taking slightly less each month even 1 mg I feel am making progress and keeping pain at bay.When I get increasing symptoms it’s usually because of overdoing g it so I wait for a week and if feel better carry on slowly reducing.I don’t aim for zero just a bit less each time
Thanks for your advice. I'm in the same situation; got down to 5/4.5 and then had to go up to 8. Now I'm back at 5. I've never tried doing DSNS steps twice; sounds like a good idea. Glad to hear this this is working well for you.
Hi, I vote for option 1.I reduced from 5.5mg to 5mg in 6 weeks and then stayed on 5mg for 6 weeks. I felt really great and it seemed clear that I should try tapering again. I was intending to do a longer DL taper but instead I seem to be working it out as I go along. I am currently alternating 1 day on 4.5mg and 2 days on 5mg. The lower I get the longer I intend to stay on the combination. So far this is working reasonably well with fairly minimal side effects. Good luck. Vx
Thanks. Glad to hear that you're doing so well! I think I'll stay on 5 mg for 6 weeks and then start a DSNS taper if I feel well enough. Unfortunately this is a far cry from what my doctor prescribed. Can you work well with your doctor?
I am very fortunate with my rheumatologist and my GP. I can only get telephone appointments with them at the moment, but so far that has not been a problem. My bloods are done every 2 months, every other test is requested by my GP. Encouraged by my progress they just let me manage the tapering as I see fit. Needless to say, I get a lot of ideas and support from this forum.
I got to 4,5mg this time last year and really struggled so went back up. A year later I have managed to get to 4.25mg. Hoping to get to 4mg after Christmas and will stay there for a good time. Fingers crossed for us all
Hi Judyb100Yes this site is wonderful and I would not be where I am today otherwise x
I was diagnosed in may 2016. Started at 20mg initially.
I am down to 3 reducing to 2.5 mg using the DSNS . 2 years ago I was on the Same reduction, but had to go back up to 5mg
I think as others say you have to listen to your body and once you are on a low dose it’s harder to reduce so better to go really slow, as it will be better in the long term.
My GP is very good and let’s me manage my own reduction. I check in every now and again and we review every 6 months.
Good luck to you it will get better it’s just when (it’s ready) that’s the question xxx
Thanks, Carole. It sounds like you're doing well. I'd love to be as low as 2.5! You're fortunate to have a doctor who listens to you. Good luck to you in the future!
I wanted to let you know that it will get better but takes time and we are all different.
It hasn’t been easy for me though, there were some dark moments, but this site has proved invaluable.Luckily I came across it early on in my diagnosis. Which gave me the confidence to question my GP and she was actually impressed when I told her about this support group.
I feel I’m coming out of the tunnel now and there is a bit of light at the end, but I’m not counting my 🐓 chickens yet xx
Very interesting. That's another reason for me to stick with 5.0 mg for a while. My doctor (in the U.S.) just told me that he's guessing that I'll be able to get some vaccine around March 2021.
Hi Judy. I have found it useful to think in terms of a week's dosage and work out the seven doses to accommodate same. The downside of this is that it is difficult to avoid 1/2 mg. I.E. splitting 1mg tablets. However it does make a slower reduction possible. Best of luck, Hamish, Edinburgh.
the information I found said Option 2 is better for those who have tried to taper and had to go back up. That's what I did from 7 to 6 and plan on doing from 6 to 5. so as you can see, there are many approaches. Hope whatever you choose, you have good luck!
I'm glad to hear that worked for you. It is really confusing because there is never a really clear answer. When I fell and broke my hip, the doctors miraculously fixed me up with a hip replacement which has worked beautifully. There was none of this mushy lack of clarity that we PMR/GCA sufferers have to go through.
You do have to remember that a hip replacement is mainly dealing with physical elements which can be measured. Far more of an art to adjusting the pred dose with so many potential variables!
I strongly recommend the DSNS method as I have just reached 0 A week ago following it with great success. And reducing by 1/2 mg when I got to about 3 made a difference but don’t hurry! Good luck !
Any flares i had and they were few and far between, were when I wasn’t using DSNS and when I clearly wasn’t ready to taper down. I learned to be patient especially towards the end when the goal was in sight and I was on .5 mg.
Suggestion 1. 6 weeks and IF your feeling O.K. DSNS reducing by 0.5mg over 4/5 weeks. I've just passed 6 years with PMR currently working down to 4.5mg. Then resting, only if I feel fine, will I start the next step down. Just had a tablet review, Dr said you need to get off steroids ASAP there not good for you! I pointed out that on file is a letter from my Rhuemy. to say that I seemed to be very well in tune with PMR (Thanks to all on this site) and he was happy to leave it to me to decide, once I can get to 5mg I could stay on that for life. I also pointed out that 6 years for many is an average, not the 2 years he is advised. He signed off the review. Keep safe and PMRPro main mantra "It's not a race" Happy Christmas.
Thank you, David. I'm very similar to you in that I've had PMR for 5 years and am currently on 5.0 mg of pred. It's good that your Rheumy works so well with you! It's interesting that he said that you can stay at 5 mg for life.
You said that you reduce prednisone only if you feel fine. That is the big question I always have: how do you define "fine?" Does this mean no PMR stiffness/pain at all or is a little OK? Right now I just completed as DSNS taper from 5.5 to 5. I feel a little stiffness in my hips when I wake up and then I feel it on and off during the day (but not every day). It's very mild and doesn't really interfere with my daily activities. The question I always ask myself is whether I should wait until I have absolutely no stiffness. (I've always had only stiffness; no pain.)
There's probably no clear answer, but just thought I'd ask to see how others deal with this issue. Thanks again.
It's not easy, as time goes by you forget how bad it has been. I go by a general feeling of "I feel like doing things" and make sure I rest around midday. I awake in the morning feeling a little stiffness, but it's gone once I start moving around. On going to bed my shoulders can be a bit painful as I get in, but once I've settled I'm O.K. One thing for sure I don't reduce until I've been feeling good for a few weeks, maybe a month. Over the last six months I've found I can do more without any repercussions and that helps you to take the next step. The last four years I've split my dose mornings and evenings. Makes it a little more difficult to decide which to drop, again I take that as I go. I feel soon I might change to once a day when perhaps I'm down to 3mgs. One thing for sure I don't want a flare as it takes so much longer to get back down. Don't know whether this helps, but hope so.
Thanks again. This is exactly the type of advice that I've never gotten from any rheumatologist! It's so helpful to hear how other people deal with these PMR problems. Since I just reduced to 5 mg after a DSNS taper from 5.5, it sounds like a good idea to wait a while before tapering again. I'm hoping that I can stay at 5.0 and then less and that I can avoid a flare.
I was fine sticking around 5 mg and was reducing down to 4.5 when BAM Covid happened and all kinds of stress kicked in. Stress, for me, makes a huge difference and so, here I am trying to balance the pains and stiffness of a flare and figuring out my "new" dose and what is my new normal. But again, the stress is ongoing (not just Covid) on various levels so I'm back up to 5.5 and 6, floating between the two to find the new "normal". I'll wait until I can get the vaccine before attempting reducing again. I like the DSNS method while playing close attention to stress factors!
Good luck to you! It's so hard to figure out the right dose when a flare starts up. Sounds like a good idea to wait for the vaccine before reducing again. At least we know that there's a vaccine available even if we have to wait a while to get it.
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