I have tapered totally pain free from 25 in sept -18 to 5 mg now in April. Trying to go slowly 5/5/3.75/5/5/3,75 pain was returning in one side of the neck and lower back.
Now I have stopped my tapering, upped my dose for 3 days to 6,25, but it is still there, the pain. Not as much but still. My aim is to go up for a couple of days and then be on 5 mg again, where I was pain free before. I hope that I will succeed with this. My reumy told me to just go back to 5 again but that’s not enough to break it.
Any experienced people in here who have something to share with me?
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Pirnilla
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I usually go up by 5mg for a while. If things ease I wait until they are back at the best i have felt on pred. Once things settle I taper as normal. I know it takes as long as it takes. What is the point in taking just 5mg or 6.5mg if it doesn't work. Think of it this way. Body's natural dose is up to 7ishmg. So if you are at 10mg then really you are adding only 3mg. If you take 3.5 and still have pains and aches...you are missing 3.5mg that your body needs. When adrenals are trying to get going surely they need a bit of help sometimes when PMR still active?
I don’t know if this is sound advice but having reached the dizzy depths of 5 mgs and completed a long haul flight last week, I was kind of in denial about how much pain I was in. I attributed it to Sydney airport where we couldn’t find the hotel bus and we ended up dragging heavy cases up and down curbs for too long. I think the last straw was yesterday morning when I couldn’t move my middle finger or make a fist because of pain and stiffness. I have also gone back to needing to sleep a lot, so all that quality TV I dreamed of has been slept through. Yesterday I took an extra 5 mgs, a first for me. I have awoken this morning like a completely normal person - flexible, cheerful and pain free. I have an imperative to reduce because both my Rheumatologist and my Endocrinologist wish to address my underperforming Adrenals. Their methods require a slow or fast reduction and replacement with Methotrexate or Hydrocortisone respectively
Maybe I have zapped the reactive inflammation. I am going to behave as if I have and return to 5 mgs.
Sorry I realise this has been all about me, but the 5 mg zap worked a treat. I don’t think 6 would have touched it.
I am glad a boost helped. Pray tell why you needed to raise your middle finger.....
I think it's karools that decided to just have pred for adrenals after a trial on hydrocortisone. So pred alone must be a choice (please correct me if I am wrong).
😂😂😂 and the fist! My body is saving me from my self. You are right about our old friend Pred. The Endo did promise a 95% chance of complete recovery from the underactive Adrenal. However, is that dependent on the Adrenal friendly, PMR unfriendly, Hydrocortisone ?
My story is somewhat like yours. DX in September whilst living in France and was started on 30mg per day, then 25, 20 and 15 after a few weeks on each dose. Tapered 1mg a month until I got to 3mg. Then I had a flare - that was June/July last year, I had to up to 7mg to stop it. Like you I was symptom free until the flare. Since then I have reduced by the very slow method advocated on the forum and have remained symptom. I am now on 4.5 in the middle of reducing to 4 and as all the experts on here say, particularly PMRpro - it's not a race to get to 0!! Good Luck.
This sounds a very familiar story. I had got down to 6.5mg from 30 mg in November. Felt very achy and the tell tale signs of increased large muscle pain. Went up by 2mg to 12 mg last week and this accumulated in having ‘a‘do nothin’ day yesterday, nearly not going out for a special occasion last night, I gave in and took an additional 5mg and what a difference! Back to 12mg again today and managed gardening, dog walking and the usual Sunday stuff. Looks like I will have to start the slow reduction again. Good luck with yours.
Adding 5mg to the dose where the flare symptoms appeared for u to 7-10 days is a recommended approach. You can then drop back to just above where it flared without tapering - unless that is it is a case of increased disease activity rather than having overshot the dose you need.
I know that 5 mgs is the absolute minimum for me now. I don’t see Sarah ( my Rheumatologist) until mid June. Perhaps I could get it all done and be back at 5 mgs by then? I had an awful struggle weaning my body off 10 though, my body loved it there.
Sorry I meant that I have been at 5 mgs for 5 weeks. 10 mgs for one 24 hour period, back to 5 now but stiff. The order in which these posts appear is confusing to say the least.
My recent flare after 12 days at 5, I did 10,9,8,7,6 then stuck at 6.
My feeling (nothing scientific) is that the day at 3.75 is leaving you vulnerable due to the low dose.
Look at it this way: 5+5+3.75=13.75 over three days=4.5 per day. Why not aim for 4.5 each day? And give your body stability. You may have to toggle the 5/4.5 for a week or so first.
Yes, that’s a good solution, I just have to ask my reumy to order 1 mg-tablets for my. They are not a first choice here in Sweden. The smallest ordinary tablets are 2,5, that’s why I tried to do it this way.
I may have asked this before...is it that coated pred is significantly different and does more damage if cut or is it just that it nullifies the reason for taking coated. I.e. tummy issues?
Thanks. Just thought if that's the reason I would risk it if no 1mg available. Big spoon of yoghurt with crush 1/2 pill followed by a couple more spoonful.
The tablets here är not coated so I should be able to cut the 1 mg-tablets in two IF I can get them. The problem is cutting the 2,5' in Four Pieces as they often turn out to be very uneven in size.
If you can get a pill cutter it would help you. Mine pretty much cuts everything even if you put it in straight. It catches the bits. I have a bit of purple material that I tip them onto....after spending a lot of time trying to spot tiny bits I had to do something. ⚪
Yes, you need a good pill cutter. Mine is a hinged box with an embedded razor blade cutter inside and a v-shaped channel to hold the pill. When the pill is in place, lever the cutter down very gently, very slowly. Open box and then you have a neatly cut pill. works for cutting into quarters as well. Can keep the half or quarter measures stored in the box. Too bad you can't get 1mg pills- they are convenient when tapering really slowly.
Can I just throw something else into this thread? I am trying to reduce from 6mg to around 5mg. A month ago I got down to 4.5mg (a bit too fast!) but morning stiffness in shoulders and hips took me back to 6mg. I have been stuck at around 6mg for about 3 months with regular attempts to reduce. Over the past two weeks I have been testing something out. If I take 400mg of Ibuprofen at bedtime I have no morning stiffness on the 5mg days but I do think that the symptoms I get are Adrenal Insufficiency rather than a flare. I say this because for me, my ESR and CRP mirror my symptoms and currently my bloods are fine. I am getting mood swings, sweats, and if I get into a stressful emotional situation I almost shut down. My brain goes to mush, I can't think straight and my heart races and I get light headed. I think at that moment my body is begging for a natural release of cortisol (which would be the normal response to stress) but it's not happening due to AI. Having read loads and loads of papers on AI I'm sure this what's going on and since the Ibuprofen sorts out the stiffness surely that can't be a flare? Otherwise I'm fine, I play tennis matches, mow the lawn, walk the dog etc. As I see it the the lack of endogenous cortisol or synthetic prednisolone is in some ways worse than the illness. The symptoms are so similar but to keep upping the pred is continuing to suppress the HPA axis leading to a vicious circle. So I'm going to keep going with DL's tapering schedule and the Ibuprofen and see what happens. The one thing I've learned with this pesky illness is that things are constantly changing!!
Me: PMR/suspected GCA Nov 2017 Started 30mg now 5.5mg ish.
This is exactly my concerns as well. I have One sided pain, before I started Pred medication I was clearly double sided. And My lower back pain subsides by taking TENS-stimulation which never worked before Pred. Maybe it's just the adrenals giving me a Hard time. My bloods are perfect, though they have shown clear marks both before Pred and while I was off it last Summer for new investigations. Thank you for sharing!
Sorry if I skimmed too quickly over earlier comments, but you Do need to get the 1 mg tabs to cut in half and try a slow drop to 4.5 mg. (As Soraya also mentioned).
Try to keep the drops at 10% (impossible as you get lower, but then go slower). Good luck!
And Happy Mother’s Day to all!
-Enjoying this cool rainy morning with the wood stove going.
Radiator sprung a leak yesterday so all pipes turned off; plus our water gets heated thru furnace too. Cold showers til fixed!
I will try that next. Sadly the 1 mg-pills in Sweden are capsules which are not able to cut in half. Still it will be easier for me to taper with them instead of the 2.5 mgs which are the smallest I have right now.
I have been so lucky, able to taper down to 5 mg without any pain. I think I got a bit over-confident.
There are people who use accurate scales to split the contents of capsules which can be pulled apart. My village pharmacy will make up any dosage you want using large denomination tablets for grinding and filling into capsules for a small charge. But you will be fine with 1/2mg steps down to 2mg using multiples of 1mg plus 2.5mg to make up each dose.
so you double the dose without first trying 1 or 2 mg?? I thought when I said I was going up from 6mg to 8 everyone said why not try 1mg first?? And then how fast do you taper back down?? Not as slow as usual right?? Anyway, I went up 2mg and it seemed to work...it gets confusing with whats a flair and whats my old OA and bursitis in the shoulder thing, but the PMR also seems to bring a generally crappy feeling to go with the additional pain too...but fingers crossed, I'm at 5mg and doing well...exercising, spring has sprung and the sun feels good, unfortunately I still eat really crappy at times...chips, etc...my downfall...Happy Mothers Day all yo Mothers..
I once had this problem while wheening off Pred last spring and then I was ordered to go up to 7.5 for 5 days and then go straight to 5 again as that was the last dose that worked for me. So no tapering actually but a kind of shot to break the pain.
Hi Pirnilla, understood. I tapered from 100 mgs speed to 2mg medrol per day. Was diagnosed w biopsy proven Temporal Arteritis 2012. It took 3 years to taper down using the slow method. Several flares. I also have PMR.
I actually tapered to 1 ng/ day.
But it seems the PMR gets pretty bad.
I have Cushing's syndrome, due to medication - medrol, because of the initial situation.
I so don't want to up the speed, but I may have to.
Hi Pirnilla, Android "correct text" is useless. The word "speed" doesn't belong there - must have come from the ozone, for ever is working the "correct text", because I never said it. Apologies -- no "speed" ----
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