Yet another AI disease

[Smell65]

Hi All,

I have just been diagnosed with this two days ago. My GP sent me to A&E as she thought I may have had a blood clot as the pain across my chest, shoulders etc was quite bad and my chest sounded ok. However blood tests and X-ray ruled this out. I was showing inflammation across my rib cage and also stomach and legs plus the stiffness throughout my body was horrendous. I already suffer with Sjögren's syndrome and ulcerative colitis so I have thought for a long time that these symptoms were due to these AI diseases but it seems not. Medication wise I take hydroxychloroquin plus mtx injections for my sjogrens and mesalazine and infliximab infusions for my UC. The hospital stated for this new AI that I should be taking prednisone on a daily basis however I can't take it due to long term use giving me sialadenosis of my salivary glands so instead I am to have a steroid injection every 4 weeks. Is this normal if you can't prednisone? Are there any other meds that help? I must admit though that the inflammation has gone right down and the stiffness is a hell of a lot better.

I've always said that when you have one AI the rest just follow😓

[Amkoffee]

I'm fortunate enough to be able to take prednisone by tablet. But yes the results of taking it are often times that quick. I wonder if in your case since you're getting injections if your pain will start to return towards the end of your 4 weeks. I guess you'll just have to wait and see. There really is not a replacement for prednisone unfortunately. They will often times treat with Methotrexate in addition to prednisone but you're already taking that. So I'm afraid you're stuck with the four-week injections of steroids.

[Smell65 in reply to Amkoffee]

Will they taper an injection too as I've been told I will have to have them for a year. I guess I will just have to wait until my next Rheumy appt. Thanks for your reply 😊

[piglette in reply to Smell65]

PMR normally lasts for two years or more, so you will be very lucky if you can get off steroids in a year. You may be one of the lucky ones though.

[PMRpro Ambassador]

There is someone on the patient.info site who has been managed with injections and I think there is one man on this site. It is now mentioned in the recommendations as well. And no, sorry, nothing else that works and if there were - you are already trying all of them!

As piglette says - if this really is PMR the chances of you being off pred in a year, or even two, are minimal.

[Smell65 in reply to PMRpro]

I think I have had it for some time.... Always thought it was due to my other AI. Thanks for your help

[PMRpro Ambassador in reply to Smell65]

I wouldn't be surprised!