I have had a complete relapse. Some of you might know that I have struggled since getting down to 5mg and then 4. Attempted a taper from 4.5 to 4 unsuccessfully. Went back to 7mg but then gave myself a blast of 10 for a week and then began the taper again. At 6.5 mg, I just felt sick and so today I made the decision to go back to 10mg, wait until I feel better and hold on for 4 weeks to see how I feel and if all OK, get the blood test to check my CRP. I have had this test request for a few weeks now, waiting to feel better to hopefully get a result closer to acceptable. I haven’t been back to my GP, just using this fabulous site and the help of the women here. I sacked my Rheumatologist in July because she just didn’t give a sh#t, and my GP is lovely and supportive, but a bit in the dark, even though she is the one who initially diagnosed me. I felt awful this morning but after taking the 10mgs I feel better this evening. I am hoping that finally accepting that I have to stay on 10 for a few weeks will help. Just one question ... it’s been a while since I was comfortable ... are we working towards absolutely no pain, or do we accept that there can be a level of discomfort? I just don’t know any more. Thanks England, Australia loves you!!
Back off the horse ... : I have had a complete... - PMRGCAuk
Back off the horse ...
Some of us are never totally pain free, we all differ, especially our reaction to steroids as well....
Loved your "I sacked my rheumatologist"...previous post about a horrible GP....well, hope he gets sacked too....
Hope you find some ease soon....good luck......we all battle this beast one way or another!
No, my GP is lovely. I would never sack her, that might have been someone else. Thanks xx
Just had to say the U.K. loves you too. I hope your present regime works. The pain free question is interesting. I have found that other pains like arthritis join the party 4 years on, but keeping active is effective and painkillers do work.
I envy you the vit D that is pouring out of your sky at the moment - leave off the sunblock for 20 mins each day. I hope you get relief soon. Hold those horses, this thing takes as long as it takes. Pred is just a fancy painkiller really, although it checks the harmful inflammation too.
Thank you Jane, yes we have loads of sunshine to share. I am such an impatient person and the news about pred makes me more so, but I have just had such a horrible couple of months with flare that I am prepared to get back some relief ... haha, whatever it takes. Xx
This is one of the things that I shall have engraved on a headstone:
You are looking for the lowest dose that manitains the level of relief you got with the starting dose. You should never feel worse at the end of a taper step than you did at the start.
AND: You are NEVER reducing relentlessly to zero. see above.
The result you achieved after a couple of months at your starting dose - providing of course it was a sensible one - is your yardstick. What is left then is probably something else - although bursitis may take longer, mine too probably 4 or 5 months - but I was still at above 10mg for that long. A higher starting dose should achieve it more quickly - that's all.
You will get there eventually but it may not be in straight line and you may have to take a rest and enjoy the view on the way. You might even have to double back a time or two - especially if you wilfully ignore the "do not trespass" signs you meet.
You have identified where you went wrong: "I have struggled since getting down to 5mg and then 4. Attempted a taper from 4.5 to 4 unsuccessfully"
That was your body telling you that 5mg was where you needed to mark time for a bit to be sure it was still enough. But you forced the issue and having sown the wind - you are reaping the whilrwind. If you'd accepted that 5mg was a good result in the time, was a safe, physiological dose (less corticosteroid than what your body makes naturally) and you were doing well, then you possibly wouldn't have had the melt down and might never have had to go back. Though I suspect you probably needed 6mg rather than 5mg.
Below 10mg it pays to stay at a dose for a week or two at least before starting the next reduction step. Be sure you are still good at that dose. If you aren't - WAIT. Once you have had a warning, it pays to stay at each dose approaching it for a month, Maybe more. This isn't a race, and even if it were, remember the tortoise beat the hare. If you overshoot and have to go back to a higher dose to manage things, within a few weeks you have lost all that perceived benefit of pushing to a lower dose. And you had the agony of the flare.
One top guy in the UK likes to keep patients at 5mg for up to 9 months once they get there. Anything below 8mg is a good dose, not causing much in the way of trouble. Pred is your friend - not your enemy,
With respect PMRpro, when I was at 5 it was just like all the other reductions, no problems and so I felt safe to proceed, as I had done with each prior reduction. So I haven’t been speeding or rushing, just moving forward as we all try to do. It was at 4 that I felt the pain. So yes, I have been on a confusing path and trying to do the best I can. Thanks for your advice, I really appreciate every word shared here.
That was what I meant - 4 was too far, so 5mg was where you needed to go back to for a while. It was you saying you felt unwell at 6.5mg that made me wonder about 6mg. It was quite right to try moving forward - but it was you who said you had struggled since 5mg. Not me. As soon as you start to struggle, then it time to not just stop but go back a bit.
OK then, can you answer my question ... do we seek the level at which we feel no pain, or do we cope with discomfort? No one seems to want to respond to that question.
I have answered the question: you are looking for the lowest dose that gives the same result as the starting dose did. I said that right at the start of my first reply. I can't tell you if that is totally free of pain or not for you, only you can know that.
Some people are free of PMR pain - I'd say I was - others aren't. There are other factors in how you feel too - you assess how you feel at the beginning and then seek to maintain the same level. If you feel worse at the end of a taper step you have probably gone too far and should go back to the last dose where you felt good. Then wait a bit and try again - eventually it will work.
Hi LemonZest,I am with you in spirit.My 2 sons are in Aus (Gold Coast) and visit often.
I had to post a question today too.This PMR is a bi.ch isn’t it?
Sending ❤️
Lovely to hear from you ... yes, it’s tough. You should join your sons in Aus, we would love to have you. Xx
There are men on this site too LemonZest11
Oh really? Haha, I know that. I have three sons, no need to tug my coat. Men are not as active on this site though.
The ones who are here are pretty active - and you may not recognise them from their user names, Nor the other way round given Gary is actually a lovely lady!
Lol, a very secret and elusive society to belong to, men masquerading as women on a PMR forum.
As for myself, I, even though I have Palandromic Rheumatism and not PMR, hang around this forum for the excellent advice on steroids etc.
I have only found one active forum on thr whole of the Web for people with PR!
😎
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