I have just seen my rheumatologist (we will know the blood results in a couple of days), and she suggested I start alternating between 15mg and 10mg for the rest of this week (my week starts on Monday) and drop to 10mg from Monday. When I dropped from 15mg to 12.5mg a couple of weeks ago, it took almost all of this time to get back to the way I was on 15mg (which is almost as good as new). I am seeing her in 5 weeks' time and I am to remain on 10mg for the test of this period. She informed me that she will be moving very slowly after that. Any thoughts from this valuable forum?
Also, she told me to get a flu vaccine. I have not even had a tiniest sniffles for many months (never get a cold during summer months) inspite of both my husband and daughter having colds this autumn and inspite of being on steroids). I have never had a flue vaccine in the past (I may have had flu once, but perhaps it was just a particularly nasty cold). What do you think?
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TheMoaningViolet
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Thank you, I think you are right on the reduction plan. I will continue on 12.5mg (now that I mastered splitting the tablets) and may do your tapering schedule from Monday to get down to 10mg slowly (I have been on 12.5mg for the past 2 weeks). I was terrible on day 2 of the first reduction and as it takes me 2 weeks to settle to a new dose I don't want to risk a flare.
If you’re now ok on 12.5mg then use my taper to get you down 10mg - obviously the problem was steroid withdrawal as discussed in other post - so with a bit of luck you might reach 10mg without an issue.
But from then on, definitely only 1mg every 2 months, or 0,5mg every month.
And please get a flu vaccine - the last thing you want on top of PMR is the flu!
I always get the flu jab - wouldn't consider not getting it. Seems a tad late in the season though - and it takes about 3 weeks to develop the immunity .
But if you couldn't cope easily with going to 12.5 two weeks ago - it isn't going to work any better now and to send you from an OK 12.5mg to 10mg by using 15 and 10 mg doses is just crazy. Asking your body to deal with alternating doses that are 33% difference is not fair. I see why she is saying 15/10 - but I don't think it will work as she thinks it will.
I think she imagined I would be getting the correct dose over a 48 hour period. I will try the DorsetLady protocol from Monday and see how I get on with that. Thank you both. Vx
Well yes - but each day you will be getting wildly differing amounts and experiencing withdrawal each time. A lot of doctors have very strange ideas about what a patient on long term pred can tolerate - it is very different from being on pred for a few weeks and changing the dose each week,
Thank you. I spoke to my GP. Apparently, even though I am on steroids I am not eligible for a free vaccine and I can go to my local pharmacy and have it administered by the pharmacist. Probably getting it tomorrow.
When I was instructed by my former rheumy to drop from 15 down to 10 I had a huge flare and ended up back at 15 for 6 weeks. She refused to give me 1mg tablets so I cut uncoated 5mg tablets into 4 which allowed me to drop 15, 13.75, 12.5, 11.25, 10. This took about 4 months to complete the taper down to 10mg with no problems.
Like I said, she is my FORMER rheumy as this was just one example of many issues I experienced with her.
Advocate for your health...you are the one living with the symptoms, and know your body best.
I know I have seen it specifically mentioned that alternating doses is NOT recommended for PMR although it can work well in other conditions. I think it was on one of the good websites like Medscape or WebMD, will try to find.
it says " In contrast to other rheumatic diseases, alternate-day administration of corticosteroids in PMR has largely been unsuccessful." - I believe that a large change in the dose falls into this category. It's not like the tiny changes some people make when they are tapering. I wasn't able to manage alternate day dosing at 2 mg with a change of .5 mg on alternate days, although some people can successfully taper this way. Swinging between 10 and 15 is asking for trouble.
I think you are thinking of Alternate Day Dosing as opposed to using different doses on alternate days to reduce. ADD means taking a double dose on alternate days with nothing on the other days. It is said to lead to fewer adverse effects and does work in many conditions where pred is required long term. It doesn't work for most patients with PMR because the antiinflammatory effect doesn't last long enough - for some people it doesn't keep the symptoms under wraps for 24 hours never mind 48.
And a large change in the dose doesn't work either because the underlying disease isn't necessarily improving at all, we are just trying to find the optimum dose to keep the symptoms suppressed.
Thank you all so much. I will continue with 12.5mg until Sunday, why change it when it's working fine. On Sunday, I will start the more gradual drop to 10mg. Regarding the flue jab, it does seem that I should be able to argue for a free one (thank you Piglette) but PMRpro made a valid point that it's a bit late in the season, so I will discuss it with my husband who always seems to know what to do event though he is only an ophthalmologist.
So far I was addressing my diet in the spirit of avoiding steroid-induced health problems (like diabetes), but perhaps I should look at autoimmune diet options as well?
My rheumatologist is a little bit tetchy and blunt, we locked horns as soon as we met, but we understand each other and she has been super nice to me calling me on a Sunday to give me PET results, calling me periodically to check on my progress; all of this is somewhat beyond the call of duty. A bit like all of you giving me all this advice. Thank you again.
The AIP diet is very hard to stick to - it excludes a LOT and that makes it particularly difficult. There is also little evidence it can cure - it may help the symptoms. I eat low carb, have done for several years, and I do seem to have fewer problems than many others. But the PMR is still there and flares when I go to too low a pred dose. But everyone is different - omitting certain foods helps some and not others.
Flu vaccines are random and the CDC never really knows which one is out there until it has gone “Viral” personal decision for you. I turned up with PMR shortly after a Shingles vaccine shot so it’s up to you what you want in your body.
I get the flu shot every year without any adverse effects. I have 2 prescriptions for prednisone, one for 1mg and the other for 2.5mg (I have a few 10mg tucked away for emergency). I am now on 5mg and hope to soon go down to 4.5mg. Easy with this combination of pills.
I took the flu vaccine and glad I did, given over Christmas I was surrounded by kids and adults who were sick with nasty colds and not something I wanted to add to things going on in my body; a decision you'll have to make for yourself, it seem to help me stay healthy
Thank you. My main concern is that getting a flu will mean increasing the steroids. I would quite like to avoid that if possible. Also we will be travelling abroad for February half term and I find I am less resistant to alien bugs.
No it doesn’t always mean you increase steroids - unless the flu causes a flare in your illness. Flu is best “treated” with paracetamol, plenty of fluids and rest.
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