Hello Everyone, I have been off prednisolone for two weeks now, with my 3 weekly jabs of TCZ continuing. I took PMRpro’s advice and remained on one mg once a week for a couple of weeks but then thought, oh dang it, let’s give this thing a try. I have to say that I do not feel like my old self, although I am free of pain (if you don’t count the old age twinges and a couple of headaches). I’m taking 200mgs ibuprofen early morning because my knees are sore, not PMR related, but apart from that I seem to be OK. I’m just hoping that the old inflammation tap is not dripping away in my bucket!! Next adventure will be to start stretching out the TCZ jabs. I still have access to ample jabs so not in a hurry, but when do you think I should start to think about this? Seeing Rheumy in June, she’ll be expecting me to have a handle on this by then, 😂 !!!
Two weeks off pred …: Hello Everyone, I have been... - PMRGCAuk
Two weeks off pred …
Well as we know 1mg can make a lot of difference, so might have been sensible to drop down to 0.5mg for a few weeks before going to zero….[even with the TCZ].
But it may also be your adrenals still stuttering a bit, they can take anything up to a year after finishing Pred to really get back to full function….and a very slow taper on very small doses also helps them.
So maybe stick with it, and just take each day as it comes, but don’t let it get out of hand.
..and good luck, sure you will soon get a handle on it!
Thanks DL, I had been on .25mg for 6 weeks after similar on .5 and .75, so it hasn't been rushed. PMRpro suggested 1mg once a week, which I did for 2 weeks.
okay -fair do’s….
Even one of the doctors at the surgery was surprised I wasn’t tapering faster. But I’m doing the slow 1/4mg reduction over 4 to 5 weeks. I could not make such a leap from 1 to 0.
Well done for taking the plunge! How are you intending stretching out the jabs? Adding a day or two to each interval?
Probably just a day at each interval. Bit nervous about this, that's why I'm asking. Might leave it for a while.
One day at a time with the gap you are at isn't much and you can always take the next one on time. Go for it!
Haha, if you say so!! I'm thinking I will give it another 2 x 3 weekly jabs and then add on a day. I know I sound timid, but I flared last time I tried this. Next jab on Saturday, then give it 1 more at 3 weeks and then bombs away!! 🫣 Thanks for the moral support, I was looking for that.
Everything crossed for you LemonZest11. I am feeling a tad lonely. X
Me too Jane, I'm back on 5mg pred after being off both pred and TCZ for 9 months. I've been on MTX since then, but still needed to add in the pred 8 weeks ago.
We need the patience of a Saint for this. It makes me cross that someone who found Tocilizumab so helpful could not continue with it like RA patients. It seems so cruel and random. Onward my friend!
Yes, but good for LemonZest11 who has managed to get some extra TCZ, but not without a great effort!
Rugger, it might be worth a try for you. After exhausting all political avenues, it was the direct approach to Roche that was successful. I told them my story, they considered it and then my Rheumatologist needed to work directly with them.
That is what I'm worried about but I guess I have to be happy for the moment.
Jane, Dont be lonelly, im still here!!😅😅
So you are! 😘
Thank you Jane. Hang in there, my last tapers were tiny, Rheumy thought I was mad.
Mad all the way to recovery. Well done for your enterprising approach to the Actemra supply. Hats off to you ! If you don’t ask, you don’t get. Xx
Rugger and I were just talking about you - think of angels. 😇
Thank you Jane. I'm not yet there, could all go pear-shaped, but we have to try, don't we? I'm thinking of you, always so positive and kind. Xx
But it worked which is all that matters!
Because of you!! I hope you realise your worth on here?? You are the balanced, gentle mix of wisdom, sympathy, humour and discipline. Thank you.
Oh well done. Good luck with this phase. Fingers crossed.
Thank you powerwalk, I am hopeful, but in no hurry to come off tcz, which has been wonderful for me
Dear LemonZest, really good to hear that you are off pred. Not sure if it is an option in OZ but here in Germany my rheumy is convinced that serum calprotectin is a valid marker for GCA/LVV activity under Actemra (as it is not Interleukin-6 dependent) - so I got it measured in December (where it was in the normal range) and again last week - if it is still ok (it takes some time to get the results) he wants me to go from every 10 days injections to every two weeks - then after a couple of months, calprotectin will be measured again and then - if still ok (and certainly if I hopefully continue to have no symptoms) the interval will be prolonged again.
Oh DeepThought2 thank you so much! You have given me something to go for. My jabs are 3 weekly because tcz messes with my neutrophils but when I attempted to extend by another couple of days last year, I flared. I don't see my Rheumatologist until June, perhaps I will just plod along as is until then and then put it to her. It would be great to know. Thanks again!
a few scientific papers on serum calprotectin (focusing on RA):
arthritis-research.biomedce...
frontiersin.org/articles/10...
Thanks for this. I have been doing a bit of research, will follow it up with my Rheumatologist. Very much appreciated.
Wishing you all the best.
Thank you Merryfield, and the same for you.
I have been on steroids for few years (PMR)I was originally told.
I have other issues. Anyway I had been reducing to see how things went. I got down to 3mg and was taking it slowly and going well. Then I had appt come up for some pain injections and was told in November that I needed to be off Pred before they could be done. So I then continued to reduce slowly and eventually stopped. Had the pain injections in January which solved for now the issues I was having.
Just recently everything has gone haywire. From the inside out and back in again!!! I won’t elaborate! I have lost a lot of weight and muscle. Seeing GP who quickly did tests and appt with a new rheumatologist. I don’t know how I got there but I could hardly get from the car park to the office. I was at rock bottom not something I write easily. My other half thought I was going to expire on him.
After examining me and a good talk and bloods again she put me on 20mg of prednisilone for a month reducing and booked me for scans which I had the next day! Amazing NHS. Thank you so very much.
I am on day three of 20mg of Pred. Still very tired no energy but eyes are less swollen and sore.
My insides have not worked yet. Hoping for some movement soon. Questionable at this moment in time.
The munches have returned as it does with using Pred. However pain is reducing and I can stand up unaided once again.
I am not sure what the future holds but 🤞.
Maybe it’s my adrenal function maybe something else! I will wait for my next appointment and see how things will progress.
I wish things had worked out getting off the Pred but we are all different.
I wonder if this sort of thing happens very often?
Thank you for reading. Sorry if a bit long winded, still very tired even though I sleep at night the 7 hrs I need.
Absolutely typical of a threatening adrenal crisis and the immediate treatment should have been an infusion of hydrocortisone. Whoever told a long term steroid patient to come off 3mg suddenly was seriously amiss. And a return to 5mg would probably have done the job.
What pain injections were said to be incompatible with pred? There are some that I think shouldn't be used with dexamethasone but that is different stuff.
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