No pain killer I have ever taken has ever touched the agony during a flare, nor has it ever enabled me to use that specific joint or joints until the flare subsides. One particular day over 20 joints for about 14 hours, sobbed a lot that day. Not because of the pain but thinking "is this it" is this the life I have in front of me ... a few months ago I found "my" answer.
Had RA getting on for 3 years now, I have had a mixture of most of the RA drugs often mentioned here, its all about finding that "right balance" and as we know this can take months or often years for some.
From day one my "main" drug has always been Prednisolone, taken in tablet form (no injections ever offered) seems to be quite the norm for lots in here.
I started on 20mg, I stayed on that dose for ages then one day I was seen by a different doctor at my local surgery, he said, "wow!, you cannot keep taking this drug at such a high dosage", he explained the pitfalls of Prednisolone
I am down to 7mg now but, and here is "my" answer (and my doctor is ok with it too) When I know a flare is coming I just take 10/15mg, within 1 hour it kicks in, I may need to do it for 2/3 days until the flares subside, then I go back to 7mg and all is well.
Now I know "my" RA's Achilles heal, I no longer have to take any anti- depressant's too.
As I have said from the start, its my answer to RA, everybody is different as we all know ...
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PeteC
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Hey Pete, what lovely doctor allowed you to have 20 mg prednisolone, I love the way the stuff makes me feel, but have never been allowed more than a very short, sharp course or a jab! Seriously though it does gradually muck up the bones. I've lived on NSAIDs most of my life,( think these muck up the bones too) and am being put through the wringer the past couple of years by the new drugs! Ever the optimist ( not really sure why, ) I keep trying. Here's to the power of cortisone. Jenny.
As I said Chubby, down to 7mg now. Right or wrong I worry about tomorrow....tomorrow. Do I sit there crippled or do I take the "fix"
If I was younger (I know lots here are older then me :)) but I 50 + by a midges, and as I also said, it's "my" solution, but hey ... it works for me
Hey Pete, I admire your strength (albeit with desperation)) I know the pain's a killer. Here I am at almost 60+ and still like a schoolgirl in front of the medics, doing what I ' m told, good luck, Jen.
I have been on steroids since my diagnoses in 2006. I have taken them orally anything from 30mg to 5mg daily depending on flare and have had intermittent injections and steroid drips, infusions. without it I can't move let alone function.
I bounce between being scared and grateful for this drug as the long term side effects can be daming but I guess that at the end of the day I take what I can to get through each day.
It's a horrid disease that can be isolating and scarey but it helps to know we are not alone in our struggles.
Well done for getting off the anti depressants .
Thanks for sharing
Good post Pete like you i find the prednisilone a great drug but my consultant hates it and will not allow me to stay on it for more than 4 weeks at a time. 20mg and two days later i am great, even at 15mg it is not too bad.
You have taken control over your pain and i think that gives you such freedom, I haven't the confidence to do that yet but i am getting there.
When i think of the side effects of the dmards and pain killers, the steroids don't seem that bad.
Hi Pete, when I was coming off of the prednisolone I increased the dose back up to the previous number for a couple of days if I was in so much pain. Found out that this is often how people cope with the decrease. Eventually was able to come off it totally. (I was taking them for polymyalgia rheumatica).
That being said that was a few years back. Now I am having the steroid injections due to sciatica. I had to ask for the steroid injection .......... I was then told by my rheumy nurse that the injections were not as bad for the bones as the tablets. I do wonder if steroid injections are something we have to ask for ?
Good luck with tapering the prednisolone dose
Judi
Hi Pete - well done for managing things with your own personalised recipe. My 20 year old son came home with Prednisolone the other day for his terrible all over eczema - 20mg for 3 days only and powerful antibiotics for the infected areas and it reminded me that I used to live on steroids in one form or another in my old eczema days.
Perhaps this is the reason why I now have little tolerance for them and go completely bipolar in the first week of taking steroids, either in injection form or tablet? I was on 1200mg ibuprofen per day for 8 months when my RA started and then had a great big gallstone flare up and came off it and it went away. Ever since if I take them (Naproxen, Diclofenac etc) I swell up with fluid retention, can't wear shoes etc and get terribly bad constipation so avoid them too.
Luckily for me I have a high pain threshold! I also find they work very effectively with swelling and pain if I take them very sparingly on a needs must basis. I have Pred and the others in my drawer for emergency flare ups only but by the time I'm in the middle of one I panic about all the side effects I'll suffer on top of the flare so I don't usually bother with more than a co-codimol or two. My GP doesn't like drugs much and always advises extreme caution - said he'd never let me take Prednisolone for any length of time because it's so hard to come off it. TTxx
Hi Pete,
Thanks for the post. It is interesting that many of us seem to have taken control of the administration of our drugs. After all, we are the ones who are able to judge our quality of life v's risks from drug side effect. It is a balance that is going to be different for all of us as we all live separate lives. Provided we are well informed about our meds I reckon we are the experts about the effect they have and how they influence what we can do at any given time.
I'm not on prednisolone anymore but was on 20mg for some time which the Rheumy team were very unhappy about. My GP was ok with a maintenance dose of 7.5 as he said that was the amount of cortisone that our body would naturally produce and that the pred had taken over from it.
Judy
Hi Pete,
I don't know much about Prednisolone, except that if you take it constantly you must never stop suddenly as your body "forgets" to make its own sort. We learned about this when my son used to have steroid tablets for his severe episodes of asthma.
But I do agree we can make our own judgements about our medications, as long as we know enough about the risks, as I am sure you do.
I recently decided I would only have my MTX injections once a fortnight instead of weekly as they made me so ill. I reckon that as it takes ages to pass through my system it might be effective enough, and it was.
Did you know that Vitamin D3 is a steroid. I take high doses of D3 and I am sure it has helped my pain and fatigue levels.
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