Severe hand pain on reducing from 3mg to 2mg
Posted , 11 users are following.
Having started on pred at 20mg 20 months ago I have been reducing well, going more slowly since hitting 5mg and using the DSNS method over 7 weeks, with only one minor blip. Over the past week or so I have been hit with severe morning hand stiffness & pain, useless hands really, no dexterity or strength and difficulty even closing to a fist, not becoming usable until mid afternoon. I used to split my dose taking a third at night and the rest on waking but stopped this when I got down to 4mg as I read that a split dose might make it harder for my adrenals to step up to the plate and start working again.
Being unsure whether what I was experiencing was/is a flare or another problem, as I am a retired physio who has OA in the small joints of the hands borne of 40 years of manual therapy/massage - but previously no pain in the hands - knobbly fingers, yes, but no pain, however my rheumy suspects I may have sero-negative arthritis on top of the PMR; I'm not so sure, although there is definitely inflammation present as all my rings are tight and hands are warm. So a few days ago I returned to split dose, having 1mg at night and 2mg on waking; this has helped a lot although the hands are still not normal. I haven't had an increase in any shoulder/hip pain (which was my original diagnostic pattern), so my question is how long should I wait to see if the splitting is enough or do I need to go up a dose; if this is a flare is it common to affect new joints without returning to old pains and if I go up a dose, how long to stay on it before trying again?
Thanks all 😃
0 likes, 20 replies
EileenH karenfizz
Posted
At those levels I doubt it will affect the return of your adrenal function. Can you take your second dose late afternoon/early evening and it still work?
karenfizz EileenH
Posted
I haven't tried this yet as only had 2 days on taking 1mg at night but it's definitely better today, so will try early evening and see what happens. Thanks
sharlane76878 karenfizz
Posted
I took have recently found knuckles in my right hand swollen and sore. These joints were previously not affected. I am not on prednisone using celebrex, so cant help with your question. I am wondering as yourself if it is OA. An appointment to rheumy to try to determine. I hope you find relief. Take care.
nick67069 karenfizz
Posted
Last 2 years I have had similar issue at low doses. First year hand/fingers pain started at 3mg. This year it hit me at 1.5mg. Each time I had to go up 5mg for several weeks to squash the issue and then tapper down. At first rheumi thought it was some form or arthritis, but then changed diagnosis to synovitis . You may try the same increase and see if it helps. At the low dose of 3mg or 2mg, there is hardly any side effects, so why not increase the dose to handle inflammation ?
BTW, at 3mg one should try tapper in smaller steps, like 0.5mg. It DOES make a difference.
Anhaga karenfizz
Posted
I have known for many years that nsaids shouldn't be taken for osteoarthritis as they interfere with cartilage regeneration. It is only recently that I read somewhere that pred also is bad for cartilage. I'm assuming that this, coupled with the low dose of pred I'm on now, explains why OA seems to be more troublesome than I remembered it from pre-PMR days. Of course pred helped all my aches and pains, even those from OA. An excellent physiotherapist has been helping me through the various stages of recovery.
jillian92038 karenfizz
Posted
Not sure I can be of any help but to agree that this seems to be a problem with low doses. I too hit this problem first when going down to 3mg. My doctor said it was just old age ( 67) and nothing to do with PMR as some of my knuckles are knobbly. I know this isn't the cause as the knuckles themselves give very little discomfort. It is the whole hand- particularly base of thumbs so holding anything ( breakages are becoming common place in my kitchen) or trying to chop etc is increasingly difficult. On increasing my dosage twice, as a result of flares, the hand pain completely disappeared but has now returned as I have reduced to 7mg.
Am due to see a Rhuemy on the 2nd so will let you know if he comes up with any answers!
EileenH jillian92038
Posted
You sound like me - and pain like that is a sure signal I'm flaring. It was there at the beginning, goes with a decent dose of pred and comes back if I get too low for the current disease activity - and at present it is back by 12mg!
karenfizz
Posted
Thanks everyone; I have gone back up to 4mg to see if that settles it as I wasn't having the hand pain at 4mg, if not it will have to be 5mg. How long should I stay up for?
I also take the point that to reduce by 0.5mg now would be a good idea, although I have been doing DSNS method over 7 weeks, but I guess its still too steep a drop. Disappointing as so far I have avoided any flares and also stayed away from omeprazole & methotrexate.
lynda62707 karenfizz
Posted
hmmmm, interesting.
I've got a couple questions tho'.
Is there a problem with Omeprazole? I've taken it for YEARS, and never had any doctor tell me not to. and, I take it daily as prescribed!
Secondly, from everything I've read, (on other threads too), I've seen many people up there dose, or EVEN go back on pred when they start experiencing more pain.
is this (pred) now a life long medication, even when you've finally gotten off it?
I'm not being disrespectful. I'm just Really wondering. it almost seems like taking aspirin for a headache, except it's NOT.
And, if you do go back to 5-6mg for a week, do you still have to taper all over again?
Ugghhh....sorry, but these are the things that confuse me!
Anhaga lynda62707
Posted
One week at a higher dose doesn't mean you have to taper all over again. But it's probably a good idea to drop down to just above the dose where the flare happened. Sometimes it's not that we're tapering too fast, it's that we've reached the lowest dose which manages our symptoms while PMR chugs away in the background. I was on around 2.5-2 for a couple of years. Only recently have I finally been able to taper successfully again.
Omeprazole can cause bone thinning = osteoporosis. It was not intended for long term use although many doctors prescribe it this way.
peggy_56092 Anhaga
Posted
The problem with abruptly stopping Omeprazole, when you have an ulcer, is the ulcer can reopen, bleed, and cause an emergency, which happened to me. I have now been on it for almost three years, in addition to pred and vitamin supplements.
lynda62707 peggy_56092
Posted
Ah, haaa....this is precisely why I'm on it!
I found out just about a year ago that I've got Osteopenia!
Great! one more thing to be concerned with.😖
peggy_56092 lynda62707
Posted
Just keep taking your meds religiously, take a daily walk, and be happy that your can.
peggy_56092
Posted
Yes, I have Osteoporosis, which is worse, but I find that after a hot bath, and a long rest after breakfast, I am able to walk for a while. Having a dog helps or another friend who also needs to walk and eat for health. . . use it or lose it.
EileenH peggy_56092
Posted
Stopping omeprazole should never be done abruptly after longer term use - i.e. more than a couple of weeks - as it can lead to rebound production of even more acid than previously.
But Anhaga doesn't say anything about stopping omeprazole - she has pointed out one of its adverse effects and that it is not supposed to be used long term as a result.
EileenH lynda62707
Posted
Omeprazole stops the production of acid in the stomach, the body needs an acid environment in the stomach for good absorption of calcium, so taking omeprazole long term may lead to the development of low bone density. It was not designed to be taken forever and that is reflected in the data notes where they say it should be used for not more than so many weeks at a time although there are problems where it is needed for longer. Stopping it after a long time is also problematic.
Pred is not necessarily a lifelong medication - if the reason you are taking it has resolved you will probably get off it. In my experience I don't think MANY people go back on pred, some may be persuaded to stop it too soon and then they need to go back on it. Many doctors think PMR lasts 2 years so after that it must be gone and the patient can stop pred, in fact about half of patients take just under 6 years to get off pred, 40% still need a very low dose after 10 years but that may be poor adrenal function rather than PMR or possibly that that very low dose keeps other symptoms such as OA at bay, giving them a better quality of life. Other people go back to a higher dose when they have overshot the dose they needed during a taper. The way you find that correct dose is to reduce until symptoms resurface at the next dose down - and you go back to the previous dose.
If you use a higher dose for a week to clear things out (so to speak) then you don't need to taper but it would be a bit silly to go back to the same dose where the symptoms flared up - it was obviously not enough. That's part of the reason we say SLOW, you need to know the new dose is still enough to work and you need a few weeks to know that.
lynda62707 EileenH
Posted
thanks Eileen, that helps make it clearer.
as far as the Omeprazole, yes, I'm aware I've been taking it for an unusually long time. it's due to a bleeding ulcer I had Years ago. in fact, that's where ALL my health issues began! the procedure I had done, to clamp off the ulcer, went awry. the wire they inserted nicked my Phrenic nerve and caused my diaphragm to become partially paralyzed. and "BaBamm"! I was off and running with one problem after another!
Arrrgggg!
anyway, that's why the long term use of the Omeprazole. in fact, in the last few wks, I tried going down from 40mg to 20mg. nope! that acid was back within a few days......and I DON'T want ulcer problems again!
and, so it goes.
happy 2020 to you.🎉
Anhaga peggy_56092
Posted
Oh I should have clarified - you do have to taper carefully off a PPI and substitute a different medication, like ranitidine, in order to avoid the effects of rebound acid production. Thanks for pointing this out.
peggy_56092 Anhaga
Posted
And now they say ranitidine causes cancer! I have stopped trying to get off my 20 mgs Omeprazole for the time being.
EileenH peggy_56092
Posted
I think you will find it isn't that ranitidine causes cancer but that supplies from some manufacturers have been found to be contaminated with tiny amounts of a potentially cancer-causing substance. That isn't the same thing at all - it's a bit like whether a bacon butty would cause cancer - maybe if you ate a couple of dozen a day for life.