Control freak.

[Researchfreak]

Have RA since June 2023. Take steroids but tapering down to 4 and a half mg. Woke up with quit severe pain on top of shoulder. not injured shoulder. Is this part of RA not impress if so. Am so stiff and have pain in other joints but manageable. I just think what else is round the corner. I am lucky I do not suffer with mental health issues. I’m a very positive person with a high pain threshold thank god. I just need to know what is going on and I can then deal with it. Thanks

[FamilyHistorian]

I’m not a medical person but after over 40 years of RA I found pred to be a critical part of my medicine.

I started to be weened off the dosage but it was very slow eg .5 mg alternate days for a month then next month stay at that dose then .5 alternate days. Eventually I got down to 3.5 but I was then suffering flareups and severe pain in my case in my elbows. If I felt this coming of I would take one big dose (in my case 20mg) and that settled it so I carried on with my 3.5. However I have now gone back to 5mg Dailey as this seems right for me.

Really you need to discuss this with your rheumatologist it’s all about getting all your medicine right. In our area the team have a help line which means if necessary you can get an appointment at short notice.

[Researchfreak in reply to FamilyHistorian]

Thank you for the information. I really need to read into this disease. At this present moment my shoulder is giving me some serious discomfort and for no reason. That’s the problem for me, no logical reason for any of it. One minute you’re fine then the next minute you’re on your knees. It takes over your life and ruined any plans. I don’t like this as it’s so unpredictable. Thanks anyway.

[rdf56]

Is there a reason that you didn't mention that you're taking anything other than steroids? What about plaquenil, methotrexate, biologics? It's pretty unusual to only use steroids to treat full blown RA. I hope that you are getting the most effective treatment. Things are usually worse when you're tapering steroids. I hope you are feeling better soon

[Researchfreak in reply to rdf56]

I have also been prescribed hydroxychloroquine.. but I don’t think they are any good. Things have changed for me. Been in hospital a couple of times each time for one week . They were pumping large doses of hydrocortisone into me for another ailment and I think it has done something for the ra. I’m just thankful I don’t have the pain anymore . I’m tapering and on five mg day dropping by 1 mg a week. I just see how it goes and act accordingly. I don’t doubt that I had full blown ra at first because I couldn’t stand because ankle pain was excruciating and hands were the same.

[rdf56]

Maybe the doctors will think its time to begin biologics. That's what made a difference for me. Some folks don't respond to methotrexate. I didn't think much of it, but when I had to stop my plaquenil, (after 32 years, for retinal toxicity), I had a lot more joint pain, so I know that plaquenil made a difference for me. Good luck

[Researchfreak in reply to rdf56]

Not heard or know anything your talking about. I have stage four liver disease along with four other autoimmune conditions. I was fit healthy and very active then I got a cold flu attack no sneezing runny nose etc and I just got worse. But hey ho someone is always worse. I bit the bullet and get on.

[rdf56]

Well, now you have said that you have stage 4 liver disease, that is a lot more informative. Many of the drugs used to treat these types of autoimmune issues are too much for the liver to process safely. I'm sure your doctors can give you more information on this.

[Researchfreak in reply to rdf56]

I’m fine I manage my situation don’t worry I’m ok. Thanks for your concern.