Once again my tapering from 10mg to 9mg has backfired.
After the first setback went back on to 10mg. for another month, then tried the reduction back to 9mg, but after just 2 weeks have had to admit it is not working for me.
SOOO tired and pain in hips returned. so back to the 10mg dose again.
Any experience or advice on this step down from double figures (10) mg to single (9mg) would be gratefully received It seems to be a milestone I cannot achieve atm. 😌😔
You could try reducing by only 0.5mg and one for the slow tapers we always talk about.
Plain white 1mg tablets can be cut -or you can mix and match with 2.5mg & 1mg to get the odd 0.5mg.
Two tapering plans here -
healthunlocked.com/pmrgcauk...
healthunlocked.com/pmrgcauk...
But give yourself a few more weeks at 10mg before you try again
You are never reducing relentlessly to zero pred - you are tapering the dose in a process called titration to identify the lowest effective dose for YOU. That is the lowest dose that works as well as the starting dose did. Everyone is different, we absorb different amounts of pred and if you are a low absorber you appear to need more pred than your neighbour who is a good absorber. For the moment your lowest effective dose is 10mg - it doesn't mean you won't get lower, just not yet. Don't fight it, repeatedly forcing a taper step that fails can make it more difficult to reduce the dose. Just be patient, Wait at least a couple of months and try 1/2mg and very slowly using one of the slowed tapers if you aren't already (under Tapering in the FAQs).
thank you is there a scenario then that I may need to stay permanently on 10mg. If that is the lowest dose that seems to be effective for me ?
As Snazzy says - don't think that yet. As I said, it doesn't mean you won't get lower - just not yet. You can only get to a lower dose when the underlying autoimmune disorder becomes less active which it tends to do slowly over time. The more active it was to start with, the longer it usually takes to get to low doses. The median time to get to 5mg is 15 months - that means half of patients are at 5mg within 15 months. The other half take longer. To be at 10mg in 6 months is not unreasonable. Smaller steps down and longer timescales seem to work better than rushing at things like the proverbial bull in a china shop.
Hello, I wouldn’t be thinking in terms of, “well, this is it, 10mg forever” just yet. I had a look down your posts and only 6 months ago you said you had been recently diagnosed with PMR, so well under a year. That’s really not long so perhaps your expectations are causing a lot of your distress. DL says try 0.5mg with a long tapering plan (served me well), PMRPro said, you are not aiming for zero, you are aiming to control your symptoms. I’m saying, hold your horses, it is early days, take the pressure off yourself.
For what it’s worth, it took me six months to get from ten to nine mg.
There was a study, I seem to remember from my early days of pmr, which recommended patients of pmr to stay on ten mg for a year, and this gave a better outcome at the end of the day.
I have, more than once, said that pmr requires patience, more patience, then more patience still!!! Very frustrating, I know, but you cannot hurry pmr. And yes, reductions of just a half mg would probably work better for you when the time is right.
The 10mg for a year is part of the protocol that Bristol used in the reign of Prof John Kirwan. The paper was written by Vanessa Quick as a student and we know she still uses it as Professor of Rheumatology at Luton and Dunstable hospital. She specialises in GCA and works closely with Prof Sarah Mackie who also espouses the concept of slow tapering.
rcpe.ac.uk/sites/default/fi...
Yes, that is the one I was thinking about and it was helpful to me as I went through that stage. Sometimes it's all about managing expectations.Thank you.
I'm sure the reason it works so well is that there is no pressure on the patient to reduce come what may at a point many patients still need more than the rheumies think. And I'm positive avoiding flares is crucial - more flares seems to lead to longer journeys and not just because you have to go back to a higher dose which obviously takes longer.
I got stuck on 11mg for 6 months. Beginning of every month I would tentatively try a 0.5mg drop. It was very dispiriting. But then one month it worked. I am now very slowly tapering down. I won’t make 5mg at 15 months but any drop is a big achievement.
You don’t need to make 5mg in 15 months…. and you shouldn’t be pressurised to do so [even by yourself ].
Sounds like you have worked it out, and as you say any reduction is an achievement…
15 months is just a statistic - half of us take longer ...
Of course. Sorry. It’s my wry sense of humour - I have learnt to take each day as it comes. Not expect too much and fully expect to get stuck at some point again.
Interestingly it was a dose of Covid that unstuck me this time around. It gave my immune system something else to think about.
I am desperate to get off Pred as I have gained 5 kgs in 7 months and it is causing the pressures in my eyes to increase putting me at increased risk of glaucoma. I also get flushes and sweats with it.
My rheumatologist has me tapering from 9 mgs to 8 mgs and then another 1 mgs every fortnight. I have been tapering for the last five days and I am finding I am getting stiffer when sitting and my neck is getting sore again. I have been on 20 mgs of Methetrexate although he has dropped that to 15 mgs as I was getting terrible fatigue with it. He has added into the mix Plaquenil 200mgs daily.
He is seeing me in three months and has discussed putting me on one of the bio meds which I need special permission for in Australia. I have to try the combo of Plaquenil & Meth first before I can qualify.
I am constantly fatigued and I don't know if it is the meds or the PMR itself.
12 months ago, I was a fit and full of life 54 year old - not now and it really gives me the sh*ts.
To lose weight you need to cut carbs - sometimes drastically. Had you asked the question a bit earlier when you first started to put it on you would have got plenty of advice and may have saved yourself some grief.
There is info here [from FAQs]-
healthunlocked.com/pmrgcauk...
Although you want to be off Pred asap, the tapering regime will only give your PMR a chance to flare - which in the long term will do you no favours - you may well require more to get it back under control.
Many have raised eye pressures initially, but they do return to normal as the Pred decreases.
The fatigue could be a combination of the meds [MTX is certainly a culprit] but also poorly controlled PMR.
Plaquinel is used for RA and LUPUS, not sure how successful it is for PMR though.
Cut your carbs - it really does work with pred and I lost 35lbs while still on pred. It is all very well being desperate to get off pred but it is the best option for managing PMR, even taking the new and very expensive options. I know, I have tried both.
As for your eyes, you should have been started on eye drops to reduce the pressures. They work very well.
The other symptoms you mention are as likely to be the PMR as the pred - I still suffer them despite being on tocilizumab, fatigue and sweats have never gone away.
I tried MTX, I had to stop it because of the fatigue and the fact it actually made so-called pred-effects worse, or, to be more accurate, I had pred effects I had never had with pred alone in the previous several years: I had never really gained weight on pred, I had gained weight with 5 years relative inactivity because of undiagnosed and untreated PMR (so no pred) and it rearranged itself on pred but I gained no more. I had to switch to methyl pred when I moved to Italy because prednisolone wasn't available here and then I gained a lot of weight as well as having other very unpleasant adverse effects. As soon as I switched to prednisone and cut carbs, all that disappeared and I lost the 35lbs. On MTX I was constantly hungry and gained 1kg in a month! It caused aches as well as the overwhelming fatigue so I couldn't function.
I have been on tocilizumab/Actemra for nearly 2 years. It has allowed me to get from the nearly 20mg pred I had required to be able to function while my husband was terminally ill and I can manage well on 7mg pred. But any lower on pred, I have now tried 3 times, and upper arm and shoulder muscle pain returns after a couple of weeks. This is because PMR probably has more than one underlying cause of the inflammation, in the same way GCA does, and tocilizumab only works on one, the IL-6 component. It doesn't work on the others and pred is required to control the inflammation due to them if they are involved in your PMR. It applies for half of patients with GCA who are on tocilizumab - they continue to need about 8-10mg pred to manage all their symptoms. In that time I have lost about 5kg but very slowly - maybe I need to try harder and cut carbs more.
Don't assume that tocilizumab/Actemra is a magic answer - it isn't necessarily. I can't say I have any side effects but there is the injection every week, the inconvenience when travelling. After 2 years of injections the skin on my stomach has changed - I feel the needle going through the skin surface now. I haven't gained any weight but studies have found that visceral fat (the fat around abdominal organs that is associated with heart disease) increases in patients on TCZ and I think the fat roll above my c-section scar is bigger - you know, the one you'd have a tummy tuck for!
What Im trying to say is that you can probably sort out some of the weight gain now - don't have to wait for the mills of the Australian health system to grind - LemonZest11 can tell you all about that as she has been there to get tocilizumab. And even with it, you may have to put in the same effort to lose weight, you might not get to zero pred and it does have its own adverse effects as others here will tell you, it can cause diverticulitis problems. I'm very grateful for mine, as are a lot of others who have had it for GCA, but it isn't always magic.
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