My typical taper problems....
Posted , 13 users are following.
Hi folks. As is my norm with having problems on my pred. taper, I'm once again reaching out to those I consider "experts" in this whole PMR journey.
I managed to get to 5.5mg(again) for about 4days. the pain in my shoulder's been excruciating, to the point I'm lifting my right arm with my left just to reposition in bed!
3 days ago, I caved, and went up to 12.5. the pain still remains, but is much more manageable.
my doctor is gone, and for the time being, I've got NO plans to leave the apt due to Covid19.
my question is, should I up the dosage again(to my original 15mg), or just hang tight for awhile?
also, when I start another taper, can I go down fairly quickly to maybe 6-7mgs?
sorry to bug you, I'm just tired of trying to do this(along with everything else) on my own.
thank you, and I hope you are doing alright in these challenging times!💕
0 likes, 26 replies
Tinapoly1 lynda62707
Posted
Hi Lynda, Your body will dictate if you are ready to go down & how fast you can go down. When I got PMR 2.5 years ago I was put on a high dose but I was able to go down on my dose very fast until I hit the wall at 7.5 mgs. which I was on for a while . It took me 18 months to go from 7.5 to 5 mgs. . My doctor told me to taper down off of 5mgs. & I tried for 3 months taking 4.5 & 4.3/4 mgs & I was in more pain but want so much to get on a lower dose since I am loosing my immune system & getting so sick all the time. I lost 95% of my thick ,long hair last year & so happy I have 4 new inches but worried that I'm loosing that now. I didn't mention to my rheumatologist that I had severe headaches for days over my right temple , behind my left eye & the entire top & sides of my scalp were so sore to the touch & I had no idea what was happening. In reading posts on this site I found out that I was having sever GCA symptoms. I went right back up to 5mgs. but heard I should go all the way up to 60mgs to prevent a stroke or blindness. I hate being in this situation. I am up 50 lbs.which is giant for me since I was always thin. Best of luck to you & I hope my story helps you with what I have been though with lowering my does.
Heron82 lynda62707
Edited
Hi Lynda,
I had GCA in Nov/Dec and had to up my pred from 5mg to 60 mg pd, now down to 25 mg and struggling to get down to 22.5mg. Started developing the left sided temporal headache after 2 days on 22.5 mg using the DNS method. Waiting to see if it persists before adjusting the dose. I was surprised to learn on another forum that GCA can persist for up to 2 years. The advice seems to be go to a dose which gives you symptom relief and stay on that for 2 - 4 weeks then start again. However, I'd wait for Eileen to confirm as has the most informed and sound advice on this forum.
A GP friend told me that under 20mg of pred most of the symptoms start to subside (ie, weight, fatty liver, face swelling, etc), and the advice from the NHS in Cambridge is that only individuals on 20mg pred pd for 4 weeks or more need to be on the highly vulnerable list for self isolating in the UK. This must mean also that the immune system recovers as the dose of pred is lowered.
I hope this helps.
Best wishes
Helen
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EileenH Heron82
Edited
"the advice from the NHS in Cambridge is that only individuals on 20mg pred pd for 4 weeks or more need to be on the highly vulnerable list for self isolating in the UK"
Not quite - it is all about history - even someone on 5mg pred may need to shield if they have been on pred a long time or have other health problems. And other health problems DO play a very significant role here.
Heron82 EileenH
Posted
Many thanks for clarifying.
BR
Heron
EileenH lynda62707
Posted
You should be able to get it under control where you are - when you overshoot the official advice is add 5mg to the dose where you flared for a week. Then you can drop back to where you were - except it is silly to go back to that dose if it was so borderline. Go back to 1mg above if you were fine there before. This is such a low dose there really isn't much to worry about .
But if this has happened at the same dose twice - stop playing with fire. It is your body telling you you have reached the first stop on your journey, Patience is the name of the game.
lynda62707 EileenH
Posted
thank you Eileen for your timely response.
What Do you mean by, first stop?
at 5.5, I was having problems.
when I "caved" the other day, I upped it by 7mgs. that's STILL not working (it HAS eased it), but, it's been 4 day's now, and I'm wondering how to proceed. I'm now on 12.5mg.
do I up it again(maybe to the original 15, or just wait and see what happens over the next week?
I'm well aware of the extra stress this Covid19 has created for me, but I'm very conflicted about what to do.
thanks in advance for your input.
btw...how are things going in your part of the world now with this incredibly nasty virus?
EileenH lynda62707
Posted
First stop - the first time you have found the right dose for now, not your final destination, the terminus of zero pred. There may be other stops on the way - no way of knowing though.
You've done the recommended approach - which works when you overshot the "right" dose. Either you have to be patient or you have to wonder if this is not a flare because you overshot but a flare in actual disease activity because of the stress.
We are getting there - they have relaxed the restrictions as of today - shops can open tomorrow subject to various rules. I can get in the car and go for a drive just because I want to rather than having a medical or food justification. The furthest I've been since early March is the 4 miles to the GP surgery!!!
Blockhead lynda62707
Posted
First thing is are you splitting your total dose into twice a day? When I was taking pred. my Dr. had me take it in the morning and later evening which worked well, total of 20 mg.
After abouth 7 Months I started weening off by lower the total dose 1 mg at a time every week which worked very well.
Unfortunately after being PMR free for a year, it has now come back but I'm holding off taking any pred and trying to deal with it through good diet and slowly getting back to exercising.
AllyCD lynda62707
Posted
hi Lynda, your situation is sounding very similar to mine. after 3 years I managed to achieve 4.5mg, down from 15, but started to feel the pain again. went up to 7.5 for a week, then back to 5mg. only trouble is this won't control pain for full 24 hours. Wondering about splitting the dose but not sure of quantities. Have you tried this?
EileenH AllyCD
Posted
The usual suggestion is about 2/3 and 1/3 - but if you were OK for 24 hours at 6mg then that is a sign that 5mg isn't quite enough.
AllyCD EileenH
Posted
ah didn't try 6. was okay on 4.5 until gp suggested further drop which coincided with stress incidence, aches returned so went to 7.5 for week then dropped back to 5mg following advice that didn't need to taper. Will now try 6 and see what happens. Am learning patience slowly. many thanks. oh is it better to take all in one go or should I try splitting 4am and 2pm?
EileenH AllyCD
Posted
If you try to split, the timing is a bit variable - unless you are awake at 4am that isn't necessary because by splitting you are using the second part of the dose to extend the effect to last 24 hours. So you may be able to take the bigger bit with early morning tea or breakfast and the rest with lunch, or tea or dinner - you have to experiment a bit to find what suits you best. Sometimes the later dose might affect your sleep - but there are people who can take their entire dose just before bed and still sleep like a baby!
lynda62707 AllyCD
Posted
thank you Ally....and, no, I've not tried that. however, it's 9am and I've not yet taken any meds. I think I'll try splitting it (I'm back to 10mg) so I'll do 5 now, and 5 later. we'll see how that goes. the worst that can happen is it won't make a difference, but at least I'll be at the same dose! TY
AllyCD lynda62707
Posted
Hi Lynda, am also trying a split tomorrow (British time) 3.5mg in the morning and 2.5 mg top up in the afternoon, thus making the 6 mgs suggested by Eileen. Hoping I'll be one of those who sleeps like a baby. Let me know how you get on, good luck. This PMR is a real pain.
alebeau lynda62707
Posted
I too am discouraged by the tapering which is it seems very unique to each of us. I am again struggling at the 10 mg mark and my ESR has risen slightly to 10, CRP is OK.
Am holding off increasing the pred again till I video conference with my doc on Friday. I expect she will bump me up to 12 again which seemed to be good last time I flared. I am taking Tylenol 3's in the meantime to get through the day. I was hoping the pains would subside after hitting 10 about 2 weeks ago but no let up yet. Chest pain is returning not to mention extremely sore shoulders,
PMR started Nov 2018 for me.
Good luck all 😃
EileenH alebeau
Posted
It took me over 4 years to get below 10mg - and now I am stuck nearer 15mg. I'm OK-ish at 12mg but much better at 15mg.
alebeau EileenH
Posted
Thanks for that info, I had been thinking I was going way too slow in the reduction but you have taken a bit of weight off my shoulders, I think based on your experience I should go back to 12 mg as I was fine there before. Then when (and if) I feel better I can think about trying to reduce again to 10
Thanks for your continued input on this forum.
EileenH alebeau
Posted
But next time do it 1mg at a time - and try a slowed taper like this one:
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
Softly, softly, catchee monkey ...
Twopies EileenH
Posted
eileen, i am trying the modified dsns version that takes only 30 days to reduce 1/2 instead of 54. things are not going well, at least they dont seem to be. i was so hoping it would get me lower by the end of summer but doesnt look like its working. (im at 7, trying to get to 6 1/2, year 3 1/2.)
EileenH Twopies
Posted
You are not going to get below what you need at any moment in time. And for some people that means a VERY slow reduction to fool their body.
The median duration of management of PMR with pred is just under 6 years. Some 40% of patients still require a low dose of pred after 10 years - not my figures, from the Mayo, Rochester.
At year 10 1/2 on pred and 15 1/2 of PMR I'm at 12mg. I'll swap ...
Twopies EileenH
Posted
sigh. i know. thought the 30 day plan would work, then stay at 6 1/2 for a month before moving on. brilliant! but it isnt going to happen. stay safe, stay well, thank you for your kind help.
EileenH Twopies
Posted
Unfortunately, for some the lower they get the harder it is. Perfectly logical - you are getting nearer your ideal dose.
AllyCD EileenH
Posted
tried replying earlier but think gremlin got in the works. After seeing on internet (never sure it's a good idea) an article which said immune system and cytokines did their thing at night when we sleep I am trying taking pred at 2 am, reasoning that I may be closing stable door before horse bolts, and then topping up later in day if necessary. does this make any sense or is steroid brain taking over?
EileenH AllyCD
Posted
No - perfect sense! That's what I recommend if anyone wants to be bothered with waking up then and is able to get back to sleep. The peak pred level is then about 4am (providing you are taking plain white non-coated pred at least). If the effect doesn't last until the next dose is due, then splitting that dose is probably better than "topping up" - means you manage on less altogether. Another option is to wake early, take the pred and settle down for another couple of hours until it works.
But the real question is - what dose are you on now and how long does the effect last?
AllyCD EileenH
Posted
presently on 5 mgs. Lasts until early evening when neck stiffens a bit and a general ache sets in but nothing I can't cope with. Do wonder if it is better to cope with lower dosage or knock the whole thing on the head with more preds. OR could try 3.5 at 2 am followed by 1.5 mg early afternoon? The combinations are endless, does anybody ever taper seamlessly?
EileenH AllyCD
Posted
Very occasionally people start with a slow taper and get to zero without a flare - I do know a few. But they all used something like the DSNS approach and were very aware of any hiccups, going back to the previous dose if there was any doubt and trying again later. You won;t ever do it by rushing or by denying there is a problem!