So much negative has been said about the use of steroids in RA treatment but it seems that that is not the whole story.
A new look on the use of Predisone: So much negative... - NRAS
A new look on the use of Predisone
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Simba1992
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I guess we will never have the full story and drugs will come in and out of fashion as does everything else. There are plenty of opportunities for research thats for sure. It seems some people feel great on steroids but then can't come off them and have other unpleasant side effects. No drug is a miracle or a devil as far as i can see.
Simba1992• in reply to
Lots of new research on the effects of long term low dose predisone that have infact uncovered facts of importance. What is also new are studies how to minimize side effects through different dosing protocols and so on.
It seems to be that the watch word is to use all these drugs intelligently, as any kind of blunderbuss treatment is most likely to cause problems. And this paper does seem to suggest exactly that, for example short term use of lowish doses as part of the early control. So not giving a blanket approval to all uses of steroids.
And the linked paper included this phrase about people on long term higher dose steroids.....
"He also showed that the mortality rate was increased in those patients receiving steroids versus those who were not (but this is less often emphasized). A study of patients with early RA followed over 15 years found that 39% of those patients who died had been on steroids compared to just 3% of those who were alive."
There is a lot of controversy around the use of corticoids, much more than I had thought until reading different research results and the history of steroid use through the years. But a change and a more diversified look upon the use of steroids is quite evident. Here a recent article on the subject about EULARs standpoint as well.
There is definitely a use for short term use of Prednisolone to get through the first few weeks after diagnosis. But just increasing & increasing the dose as relief of inflammation & pain, whilst not investigating the various Dmards available is unfortunately quite common.
But of course there is a lot of negativity & so many scary stories about DMards, it's not surprising people hang on to Pred & stay on it for so long, it then becomes hard to progress away from.
The addictive properties of Pred were known 50 years ago & sometimes it seems as if nothing has progressed.
On the other hand, long acting steroids like Depomedrone & Kenalog do have their uses when Dmards are still waiting to kick in.
But not everybody gets the 8/12 week relief necessary to give the Dmards time to work.
To me it has seemed more like the scare mongering has been around the use of predisone.This is also what studies say and that one reason may be that no clear rules exist on the treatment protocols with steroids. They have been overused and underused.The possitive effect on disease slowing with early corticoids with Dmrds has been shown in research. The notion that steroids only take away symptoms but does not have an effect on disease progression seems to be incorrect. Interesting in my view.
I also have concerns that not all steroid side effects are reported. The registrar said the side effects experienced couldn't be related to steroids. It wasn't listed, therefore it wasn't. There was nothing else that caused it. I would have filled in a yellow card if it was clearer whether it was Prednisolone IM, Prednisolone tabs or Kenalog, all given within a month. Maybe a culmination of all. It resolved a few weeks after, but was disturbing and he would be very reticent about going there again.
I came off Pred a month ago after over two years. I'm taking 3 DMARDS and I'm really struggling again. Even a low 2mg a day of Pred allowed me to function. I'm barely functioning now and don't know what to do. Yes, I have a stash of steroids in the cupboard but I'm reluctant to take them again. What a conundrum .
Long term low steroids seem to cause less trouble than thought earlier.
The article is interesting. I am allergic to Prednisolone (and to a lot of steroids, synthetic and animal-based). It did not work either, perhaps because the allergy prevented this.
When I had a corticosteroid injection, I got very severe thrush. Apparently, it impairs the glucose system and you cannot have more than about four injections. It did work though on an inflamed shoulder for ten weeks, about 90% effective.
I don't think it is wise to stay on any medication for too long - it just loses its effectiveness. At the least, you need to have a break and then resume it if you are not prepared, or can't, use an alternative.
Did you ever try low oral doses?
The Prednisolone was oral, about 15 mg daily. I've known various doctors say they have given it to babies but I was highly allergic to it. I am allergic to all forms of HRT and various steroids I have had for other conditions.
A friend developed a stutter on Prednisolone, which was for ulcerative colitis. No doctor would accept this so on her behalf I contacted the manufacturers who said a stutter was a known side effect and got them to write an e-mail which we could show to her GP who in turn sent it to her consultant - and what a battle it was. The friend said she was on too high a dose and that a very small dose did not have this effect but that it stopped working after a very short time.
By the way, when the Prednisolone did not work for my RA symptoms, I was told that there could not be anything wrong. I feel basing a diagnosis on the effects of a drug is pretty poor - my friend got the same attitude.
My goodness, a patient should not have to fight like you did. There are doctors though that do believe studies that say listning to the patient gives more accurate information that diagnostic tests do.
The patient in this case was my friend and she could not speak up for herself because of the stutter caused by Prednisolone. In fact, the first consultant (a private one) was just having a laugh and had never heard of Prednisolone causing a stutter. I went with her to her GP with the e-mail from the drug company which confirmed that a stutter is a side effect and she faxed it to the NHS consultant who had actually heard that the stutter is a side effect. Some of these consultants are very stubborn and arrogant and full of their own important.
I’m aware this is anecdotal but I’ll say it anyway. Prednisone controlled my symptoms very well but I was getting different blood tests results. I think it was by low white blood cell count which rheum said is normal on pred. Yes my diease was well controlled and my CRP was 1 but.......I couldn’t sleep at all. My face was hugely bloated, although I was losing weight due to a stomach problem. My mood was very volatile, to put it politely. I was on pred from June 2017 to March 2017and weaning off it was so hard. On balance, DMARDs came without side effects for me. I wouldn’t be against a low dose but anything higher than 20mg is a no-go.
Have understood that taking your pred dose between 2-3 at night makes often a big difference in side effects because this is the time your own cortisone begins to rise. This is why slow relise corticoids have been a new product where you take the steroid in the evening but it comes to effect around two o'clock at night.
This article is dated 2013 so it really isn’t such a new look. I really wish steroids were safe to use for ongoing treatment. I feel so much better on them than off, but my doctor says they just mask the problem, so you feel better even though you aren’t really better. And they cause a host of other problems later down the road. She says they are best kept for emergencies, unfortunately. Nothing she has tried so far has made me feel as good as some good ole prednisone.
Me neither - and to be honest, I'm quite happy to mask the problem. Being able to function daily now weighed up against 'possible' future issues is almost a no-brainer. Potentially staying as I am every day is no life at all and my world has reduced.
You have a wise & caring doctor.,,,het 'gets' it.
These days if Pred stops the pain some GP's claim they have 'cured' you & go on prescribing It....& then they increase the dose when the pain returns.
X months/years down the road we read of the difficulty in stopping taking it.....& the side effects it can have.
I am so grateful that when after about a week on Pred I was a neurotic mess , I bypassed my GP & paid to see a Private Rheumatologist who decided straight away it was the Pred causing the cns problems & took me off it immediately....within a week I started to think rationally.
That was many years ago....admittedly I did have pain until a Dmard that suited me was prescribed. Now I have very little joint damage,am on a Biologic ,need few Painkillers & hopefully am neurologically sound.
So if you can struggle on without Pred..until you find a treatment that works I think you might be grateful in the end.
It's no walk in the park.....but it can work.
I am lucky to have a good doctor who is young and up to date on her knowledge. My former dr had me on steroid shots every two months. When I moved and changed to my current doctor, she was horrified and sent me right away for bone scans. I can’t say I was happy at first because of the pain, but I do now appreciate the future problems she has saved me from suffering through. Steroids are definitely not the friend they seem to be.
I won't say it's easy but when I read on here how people suffer from over use of Prednisolone I'm glad I had such a bad reaction to it very early on.
It must be very tempting if X mg of Pred enables you to carry on apparently normally, but I preferred to rely on painkillers until I found a Dmard that really controlled my disease & didn't just mask it.
I do hope you find "your" drug very soon.
thanks for this post Simba,
predisnilone injections into the glenohumeral joint have worked really well for me, 3 moths of normal me again each time ,
although I have 3 completely torn tendons in my shoulders which won't be operated on due to worry about healing.
I have been on sulphasalazine for 26 years, and was fine,unfortunately i had to undergo interferon 10 years ago for treatment for a viral infection
interferon is contraindicated with RA and I was very ill and developed joint /tendon damage , after clearing the viral infection, I didn't take sulfasalazine for 2 years and had no pain and swelling , then a period of stress caused a flare up again in 2010 so I started back on sulpha and hydroxycloriqhine and 3 injections a year into the shoulders, 2 years ago my knees started swelling 24 years after being first diagnosed , I'm resisting methotrexate because i would have to take an antiviral on top to stop any recurrence, my rheumatologist said I could carry on with injections , which make me feel human again and last fro 3 months ,at the risk of kidney damage if used long term ,or take methotrexate or a biological and and antiviral,
Im not sure which is worse? if the virus came back plus risk of other infections ?-against weakened kidneys which are fine at the moment?
MY question is
do pred injections stop further joint /tendon damage ?, or is stopping your immune system on methotrexate or biologics with all the risks , effective in stopping joint damage? I know people on methotrexate / and naproxen who are having to have hips / knees replaced ?
has anyone else been offered regular pred injections
as an alternative to methotrexate?
A summery of a Cochran review on steroid use may also be of interest.
Here another good link for those who want to dig deeper and see the whole present picture on GC use in treatment of RA.
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