what next?

[Pange63]

I was diagnosed with PMR five years ago and my gp kept me on Prednisolone for two years which resulted in a catalogue of side effects including glaucoma and cataracts. My diagnosis was confirmed as RA shortly after. I have been taking methotrexate successfully since. However my condition has worsened over the past six months resulting in a one month course of Prednisolone to try and zap the knee pain/lack of mobility. It was wonderful to feel normal again but of course the pains are now sneaking back in. My consultant asked me to try hydroxychloroquine but I suffered constant headaches and came off it. So what next? Has anyone tried steroid injections into the knee joints which sounds like the next course of action? Grateful to hear your experience and if there is any hope of a treatment which supports normal living without dire side effects!

[oldtimer2]

You need to be considered for treatment in the same way as for Rheumatoid Disease, no matter how it presented in the first place. Have a look at the treatment pages on the NRAS website: nras.org.uk/information-sup...

The other DMARDs are likely to be tried, sulphasalzine, leflunomide, etc. I went through them all...and ended up with azathioprine as the only one tolerated. Then with insufficient control, I went onto a biological injections (adalumimab) which was wonderful.

Unfortunately, I have developed vasculitis as well now, so struggling with prednisolone reduction again ....

[Amnesiac3637]

Local steroid injections usually work very well and don’t have the accompanying side effects of oral tablets. It depends on how wrecked your knees are as to how effective the injections would be - bone on bone doesn’t tend to take the injection up very successfully but if you’ve still got cartilage to inject then you might very well benefit greatly for a few weeks/months.

As for treatments which support normal living without dire side effects……

Well, there are many if you hit on the right one and most treatments have minimal side effects which in the great scheme of things you can cope with and live with but it is a matter of trial and error over sometimes a long time. It’s a rotten disease to have to live with but persevere because there are new drugs coming along frequently, many are targeted like the new JAK inhibitors and at some point you’ll be given one which works for your particular set of disease circumstances.

Keep on asking questions of your rheumatology team, make sure you know what you’ve been prescribed and, if it doesn’t work, stop taking it and move on to the next. Best of luck!

[Runrig01]

I had a similar story to yours. I was treated with steroids for polymyalgia, and then GCA. 4yrs after starting steroids, they felt there was an overlap with another rheumatology condition. I was then diagnosed with ankylosing spondylitis after X-rays and scans.

Steroid injections can help, but you can only have a max of 3 into a joint, partly because there’s an increased risk of tendon rupture from repeated injections. I’ve had 2 to my knee, with about a years relief each time. The injections do still carry the risk of osteoporosis, diabetes etc. I unfortunately had a severe stroke, which was found to be due to an adrenal crisis. I was then diagnosed with adrenal insufficiency, due to steroids. When my cortisol was checked, it was undetectable, when it should have been >450. There is no way of knowing who will develop adrenal insufficiency, but basically steroids switch off the production of your own cortisol, and the cells can atrophy and not recover. It’s a horrible condition, good or bad stress can leave you unwell, with nausea, lightheadedness, headaches, low BP, and you continue to deteriorate till you take more steroids. I have to carry an emergency intramuscular injection at all times, and family have been trained to use it. I’ve already had to use it over 10 times. So personally I would advise anyone to avoid steroids, if there is another option. Obviously with PMR & GCA that’s not the case. You get all the same side effects with intra-articular steroid injections, with the exception of gastric issues. I know of some who havd developed AI after just a few injections, or a month of tablets.

There are many dmards to try. I used to take Azathioprine, but at max dose it caused liver issues. I was then switched to methotrexate which I’ve been on 7.5yrs, with no side effects from either. I also have a weekly biologic injection with no side effects either. So there are still plenty options, and although they all list side effects, it doesn’t mean you’ll get them. Most tolerate the meds well. 🤗

[fred42]

I have a similar back story, diagnosed with PMR , steroids removed all the pain but every time I tried to reduce them back it all came.Eventually I went to Rheumatology and was diagnosed with Polymyalgic onset Rheumatoid Arthritis, now happily settled on a biologic drug but it was a long journey.

My personal advice is to work hard to get a proper diagnosis and medication and to slowly ditch the steroids under medical supervision but it won't happen overnight unless you are incredibly lucky.

Hope it all works out.

[Pange63 in reply to fred42]

Which biologic drug are you on and do you have any side effects? I am on methotrexate which agrees with me

[fred42 in reply to Pange63]

I am on Cymzia which I find very good. I am unable to take Methotrexate too many digestive side effects, you are lucky as it is always described as the gold standard.We are all so very different. I love steroids and react very well to them but the long term effects are not good as other people have said.

[Sureshj]

I am suffering from RA for last 2 1/2 years. I take prednesol - 5mg and lefra 20. I dont hv any serious issues so far. I have not taken any injections so far. Prdnesol caused my glucose level to go up and i had to start insulin.

I had also used HCQ and biologics for some time, for me they were not effective. If u use HCQ, you need to have your eyes checked periodically.

My gucose levels have increased tremendously for last 9 months. Now after change in medicines(diabetic), glucose seems to be in control.

I am worried about log term effects of prednisole.