Prednisone or not

[Rika2020]

Hi everyone I have tried so many of the best drugs and most expensive eg.cellcept, cyclosporin to name a few including the biological injection actemra but have just relapsed my only saving grace is prednisone but it comes with the obvious side effects is anybody in the same predicament do you just stick to the prednisone? Or keep trying new things

[stbernhard]

Hi Tina, when you say you have tried many drugs, did none of them help in any way?

[Rika2020 in reply to stbernhard]

It only helps for about 6 months every new drug cocktail then I relapse the only constant is prednisone

[Suevs]

Hello Rika2020, I know Prednisolone isn’t everyone’s favourite medication but it’s the only thing that’s given me some quality of life. I have been taking prednisolone for 25yrs. At the very beginning I took a very high dosage (can’t remember how much it was) but now and for the last 20yrs I take 5mg a day (also Athrotec 50mg. The two together are my perfect cocktail )and if I forget to take it I know within hours. So for me Prednisolone gave me my life back. I also take Benapalli, but for me those are the two main heros.

[Rika2020 in reply to Suevs]

Thank u for replying to me I feel that I only have some sort of life on prednisone. I'm glad to know that there's others who have the same experience with me I'd like to try arthotec as my mum has been taking it for years aswell.

[sylvi]

I have had it put on my records not to give me steroids as not only does it pile the weight on me it also affects me mentally. xxx

[Neonkittie17 in reply to sylvi]

I’ve only had it once for ten months with a very long taper off it, and it was needed to enable me to move when my rheumy team didn’t get me in fast enough for an infusion in 2015 and I plummeted fast, but it made me gain three stones in weight. It’s friend and foe at times but I would want it again unless the last resort. I know it can work well for many but but it’s not for me either. xx

[LesBev]

Hi. You must do what works for you but after four years on prednisone , and after my second hip replacement, I was very ill. They diagnosed adrenal inefficiency due to the steroids. Luckily, it seems a very slow weaning off process may be kick starting my body to start producing its own steroid .

Also, I have osteopenia, potentially caused by long term steroid use.

All I’m doing her is saying consider long term effects, and, if you choose to continue maybe make sure you keep informed re blood results and bone scans etc.

Good luck with this and my warmest wishes. Lx

[helenlw7]

Prednisolone, which I presume is the same as prednisone, is the only thing which has allowed me to keep working and moving. I also take mtx and inject Enbrel, a. Biologic but these have only worked with prednisolone. I am not pain free, and haven’t been since 2004, but with painkillers it’s bearable.

Of course the steroid comes with it’s own problems. I’ve put on weight and have the moon shaped face, but I’m now steroid dependent because my body can no longer produce it’s own natural steroid.

Looking back I wouldn’t have done things differently. I was able to work in busy, stressful job as a primary teacher until I was 57, when I started with severe asthma and the combination of the two meant I was unable to work, and because of the Coronavirus I’m having to shield, but life is still good, even if I rattle!

[AngelWings]

Hello Rika2020. If Prednisolone works for you. (RA and the concoction of drugs seem to be personal to each person) carry on. The only comment about myself is that I’ve been on steroids for a long time and for the last year trying to come off them. In January I had a really bad cough and by the first week of February I was in A&E with a cracked rib and back again a few days later with burst blood vessels. I have only just recovered from the excruciating pain. Cracked rib is due to weak bones from the long term steroid use. I had no fall or injury. Just a bad cough and a 3 stone weight gain which all added to my dilemma. RA is a difficult Illness and not one that other people really understand or the difficulties the disease entails. Whatever you decide to do. I wish you pain free and well. Stay safe in these current time’s. 🌈 xx

[oldtimer]

If you just use prednisolone you have to realise that it does not prevent joint damage. It is good at reducing the pain, stiffness and swelling caused by the inflammation. It comes, of course, with its own problems at higher dosage, but at low dosage is probably safe for most people.

I have now been on it for nearly fifteen years after several tries at stopping it altogether and promptly having another flare. I also had problems with my bone marrow stopping working, put down to Rheumatoid Disease also for which the treatment was steroids. So I'm on 5mg now with no problems such as bone thinning or diabetes. Occasionally I need to increase the dose when I have a flare.

But I'm also taking azothiaprine and I don't have joint erosions, so that seems a reasonable balance, although (as the rheumatologist said) the disease is not as well controlled as he would like it to be. Daily pain has to be lived with but I recognise that as I get older some of the pain is now osteoarthritis from earlier joint damage. And I still get occasional flares that are disabling (and extremely painful).

[Mmrr]

Prednisolone is the only thing that has worked for me.

I'm in a similar situation to you, I started tocilizumab 2 weeks ago, my 6th DMARD/ Biologic. Of course I'll follow this through and keep my fingers crossed. But some of the side effects have been awful and the quality of life mediocre at best.

If tocilizumab does not help sufficiently, I'm thinking maybe just prednisolone too. It gives me the best quality of life I've had.

I'm 61 years old and would prefer a few 'good' years now, maximise what I can and deal with the future in the future. I don't see much point in extending mediocrity, dealing with side effects and often being stuck at home, just to maximise a poor life.

But we are all different and not an easy decision.

[Seashoreshanty]

It has done wonders for me i am on 5mg Prednisolone per day, When pain is overwhelming I have to take more. Been on it for a couple of years now. Also on Tacrolimus

[Neonkittie17]

I was always told by my old senior rheumy that oral and injectable steroids only “dampen down the fire” and as soon as you stop them the flames return. They are a “good stop gap” she said but you need to be on something that will control your arthritis other than oral steroids. For some it’s the only thing that will work but I hope they can find you a need it combo of RA meds they can work for you. I took steroids for ten months in 2015/16 and never lost the weight gain. Made me very depressed too. Good luck. x