Hi there good folks, I have been on 400mg hydroxy now since Jan 19 and it has worked very well , last appointment with rheumy was last July and he suggested I try to reduce 2 days of tabs back then but I started to have problems with tendonitis and went back up to 7 days and had kenalog in November even though my bloods were normal at that time , so all was ok for 8 weeks and then I started to feel things like finger and thumb on left hand swollen then small finger on right hand plus wrist hurting and top of back underneath my neck feels achy now both arms painful when I reach back so last week I had my bloods taken and the levels were slightly higher than first diagnosis so I have an appointment for 12th march to see consultant , I am able to control most of the pain with anti inflammatory and paracetamol but I just wondered if this is classed as a flare or uncontrolled disease if that makes sense , do these flares pass or is it likely that I need more meds, sorry for such a long post , thanks for taking the time to read and I hope I have helped you nod off x Jayne....
My first big flare since diagnosis a little advice pl... - NRAS
My first big flare since diagnosis a little advice please anyone.
Hi Jayne, I am just beginning to recognise what might be a flare (usually the result of uncontrolled disease) and poorly controlled disease.
I do get mini flares ie joints complain and hurt, if doing too much or stress is greater.
The differences are still confusing to me after over four years of trying various drugs.
But if you are on DMARDs and have been feeling better, then feel worse without a change in medication, likely a flare.
And if your symptoms were controlled, doses were reduced and pain etc increase, probably not a flare but inadequately controlled RA.
Others might have different experiences though...
it’s good you seem to have contact with your Rheumatologist who is the best one to help you through.
That's a very good explanation there charisma very helpful thank you, guess I'm just hoping that it resolves and dont need anymore meds , just a case of wait and see for me ....thankyou
Uncontrolled disease, absolutely. When medication is working you should not have swelling, but you might still have pain. It is the swelling that needs to be controlled as that is progressive disease activity.
Don't worry too much about bloods. Mine rarely change, even when I have obvious swelling.
Be insistent about notching up the medication though.
Thank you for your reply brushwork , it has given me some understanding of how this all works at first I was thinking that I may have overdone it a few weeks ago when I was still under the influence of the kenalog injection but it has gone on to long now , yes I will be assertive next week at my appointment x
Hello. I was taking 400mg Hydroxychloroquine daily until a few weeks ago when I saw my Consultant and he reduced the dose to 300mg. A week later I felt more stiffness, I had a blood test and it seemed I was having a flare up. I thought I would be put back to the higher dose but instead they increased my Methotrexate from 12.5 to 15mg. I now seem o.k and my aches and pains have subsided but I am being monitored more closely. I was told it could be uncontrolled disease or a flare up.
Well fingers crossed for you I hope it works x I had a good few months last year with no symptoms at all but now it's gone haywire so guess different meds for me now ....thanks for your reply
Every one has different flares.... can only suggest you wait until you see your rheumatologist...maybe your drugs need adjusting...or changing.
Sounds as if it might be the Kenalog wearing off .....not long to wait now.
Thanks for your reply AC , cos I'm new to all this I was trying to see if you can have a flare but disease still under control , but yep your right were all different and as you say not long now ....x
If everyone wrote in describing their flares Patsymay we’d be here till next Christmas!
There is no set description or feeling for a flare.....it can be anything from pain, to swelling , to feeling like you have flu.
Make a note of every feeling and then you can explain to your rheumy.
It’s quite normal to go blank the minute you get into his office!
Yep will do thanks x