Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I'm very nervous about going to Northwestern Medicine for a second opinion about my RA. I love my rheumy and feel very comfortable with her but nothing seems to be working. I want to get a second set of eyes on my case but I don't want to mess up my relationship with my current rheumy. Also its not knowing what this new rheumy is going to be like. I'm just scared that nothing is going to work and I'm going to be on steroids forever. I'm currently on 4 immunosuppressants and 40mg of methylprednisolone. Hoping the new rheumy or my old rheumy have some new ideas for me.
Just Worried and Scared.
Just Worried and Scared.
It can't hurt to get a second opinion. It doesn't mean you're changing Rheumies.
Not quite sure what you mean when you say you are on 4 immunosuppessants. Do you mean 4x MTX tablets or your fourth biologic?
I was dx 5+ years ago and, like you, I haven't been able to find the magic "drug cocktail" to control my RA.. My Rheumy has treated it aggressively from dx and I'm now on my 4th biologic.
I know how you're feeling but hang in there until you've seen the new rheumatologist and see what he has to say. You are so young
which makes it so much harder.
Gentle hugs
which daily collective immunosupprpresesants? you mean imuran,dmards? biologic?
what is your daily cocktail?
. i have only had 40 mg as a daily dose while hospitalized for pneumonia and on oxygen - this type of dosing makes my disease disappear. how does it feel to you?.
are you in a wheelchair or unable to walk without the high pred?
happy for you that you are getting a second opinion. go in with strength and curiosity - work on your fear and reticence - so you can garner the most information. who can go with you to take notes and also listen?
hugs
depot
Depot
I hope for you that the rituxan will come around so that you do you have to wait the full 6 months before bailing on this biologic. all good thoughts.
did any of the biologics work for you without 40 of steroid?
good luck on your consult.
I am not sure if the second set of Rheumie eyes could troubleshoot the control you are not getting yet with this aggressive treatment but I think like the other posters you are brilliant to go get a full review of your chart. I am worried about your adrenals with this mega high steroid thing for so long.
do you think there is a diagnosis they are missing? when you were diagnosed at age 25 with RA what was your bloodwork and imaging like? is it hard to move around at work?
did the current rheum that you like, has she MRI'd any joint areas yet so you could know the status of any erosions from the disease?
I know this must suck, particularly, at age 29. you are a full time nurse? are they supportive at work? I hope so. I hope you live close enough from your family to get their support now and then. And I hope you have fabulous friends.
depot