In quick summary I was diagnosed just over three years ago with PMR. I have had five failed tapers without the benefit of this group. After no pred for 10 months I restarted 10mg last month for four weeks with a review scheduled for 22 November.
I wonder how to be best equipped for my appointment. My main concern is tapering/slow tapering. What do I need to know and what questions should I ask my rheumy?
Also I had a GP appointment last week on unrelated stuff. I asked about 0.5mg pred tablets. Seemingly the answer is to cut a 1mg in half. Is that the way it is (in the UK). By the way this GP is excellent - she diagnosed my PMR within a month.
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You can get 1mg tablets in UK but not 0.5mg. As you say you need to cut the 1mg in half. You must not have the enteric coated tablets though if you are going to cut them.
Like Piglette, I cut my 1 mg tablets in half for a slow well spaced taper. There is a whole section on tapering in FAQs that you can access on this page.
I would want to know more about the research study I took part in and how it may have impacted on my current state of health. Was it Actemra which is licensed for PMR and GCA in America I believe? If not, would Actemra be available to you now?
I would also be concerned about GCA, Extra Cranial GCA in particular. This condition is very much a sister condition to PMR and often goes undiagnosed although it can affect one in five PMR sufferers. It is also explained in FAQs
My own extra Cranial GCA was diagnosed because I remained unwell after 4 years of treatment for PMR. It was diagnosed with a vascular ultrasound scan.
The study used a drug called ABBV-154 not Actemera. I do not know if I can get that. I am going to do tons of research on tapering and GCA before my appointment. Thank you for your helpful thoughts.
As well as the 0.5mg steps we suggest one of the following tapers, similar but approached slightly differently… whichever you prefer - but aim is same [to get from current dose to lower one in the easiest way without flaring]-
The one I have looks like the photo. It cost me all of £3.50 at the local chemist, and they had several diferent makes and models in stock, all at a similar price.
Pill cutter, showing a pill in the cutter and two halves in the storage area
I think that the crucial thing when reducing your dose is to do it very slowly. Use a slow tapering plan as posted by DL (the second one worked for me) but I would add that at the end of each taper, maybe wait for a couple of weeks before starting the next taper just to be sure that your body has adjusted to the new, lower dose of Pred.
Sometimes it is easier to cut a 5mg tablet to get 2.5mg and add 1mg tablets for the 1/2mg drops. There are 2,5mg plain and e/c tablets but the e/c ones are cheaper than the plain ones do sometimes the coated ones are issued so you have a mixture - NOT a good idea.
To have had 5 failed tapers in 3 years tells me that your doctor hadn't a clue. It isn't a case of getting the symptoms under control with a high enough dose of pred and then simply tapering to zero and stopping. As I'm sure you have gathered by now, pred is a management strategy and you taper to titrate the dose to find the lowest effective dose. Has the 10mg achieved good symptom control?
That cutting regime is easier - and I would never have thought of it... But your remarks have made me think. I am sure I was prescribed 2.5mg tablets when I first tapered to 12.5mg. If my recall is accurate I wonder if they are still available.
A little bit more history. The GP that diagnosed me three years ago went on maternity leave soon after. With the exception of the last flare (where my rheumy put me back on 10mg) another GP handled all of them. His advice was to go back to 10mg and I did that four times with him getting down to 4/5mg in 1mg 4/6 weekly steps each time before flaring. Getting to the lowest effective dose and pausing has never been mentioned. But I now feel much more empowered to say what I think my body is telling me.
Yes the 10mg is working very well which has always happened - quick and excellent response to the increase in steroids after every flare.
Thanks for the warning. This may sound silly but does the packaging or leaflet state if they are enteric coated. I have just checked my tablets and it just states active substance is prednisolone and "Prednisolone BP 5mg: White, circular flat bevel edged tablets with breaking on one side plain on the other."
Plain pred is almost always white, though one company makes 2.5mg pale yellow tablets. Enteric coated are red for 5mg, dark brown for 2.5mg and I think 1mg are yellow. They look more like small Smarties in shape.
I must admit, the idea of dropping 1mg in 4/6 weeks sounds frighteningly fast. I usually take at least 8/10 weeks between each taper, and then only by a maximum of 0.5mg at a time. The old expression 'slowly, slowly catchee monkey' comes to mind for some reason, as does the story of the tortoise and the hare. The slower you go the more likely you are to finish and not end up flaring.
Also, as has been said by much more knowledgeable people than me on here, it isn't a race to zero, but a very slow taper to find out the minimum level you'll need in order to maintain a good quality of life.
Thank you - yes that is the message which comes over loud and clear from this forum. I have sort of slipped sideways from my clinical rheumy (she was on holiday at my latest flare) to my clinical study rheumy. Having seen him every fortnight for about 6 months until last July I have a slightly different relationship. We'll see how it goes.
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