Just over three years ago I was having horrible face rashes which the rheumy said was lupus. They said I was in remission so I could come off infliximab and methotrexate - just like that! Within a month my RA was much worse and my knees (OA) wouldn't work. I became virtually housebound.
The rheumy started to play hide and seek with me, first hiding behind scan appointments for which there were long waiting lists. She started to postpone appointments.
In the meantime being an enterprising sort of person I got my GP to refer me to a dermatologist who laughed off lupus and referred me to a photo sensitivity clinc. A week of early mornings for tests and they'd excluded lupus completely and identified allergy as to do with the perfume in skin products including sensitive skin sun cream.
The rash has not returned, I use E45 or Dermol and a broad brimmed hat in the sun. However my RA is raging on, better controlled by ritiximab for most of the six months, the OA damage to my knees is half remedied, one replacement in November, the other in about 9 weeks, fingers crossed!
I say this is a cautionary tale because a lot would not have happened if we'd checked out the reason for my skin rash first. And if the dr had suggested a cautious withdrawal of the meds.
I insisted on a second opinion and am now seeing a very thoughtful, experienced consultant. I think that if the second knee goes as well as the first I may be somewhere back to where I began.
My conclusions- don't let Drs mistake remission for cure.
Don't assume every problem is RA/meds related.
Don't hesitate to ask for second opinion
Don't put off a joint replacement if they advise it.
Don't be like Cathie!
All very helpful, Cathie. Thank you. I know I have become much more sensitive to products since getting RA and Sjorgren's. Whether it's the disease itself or the drugs, I don't really know, but I have to be very careful with face-creams, detergents and cleaners.
I do hope you are back on track soon.
Thanks ,Jo. We're having a couple of weeks in the highlands in the new house which is great. The underfloor heating AND the views are stunning. We've had a couple of inches of snow the night, but were stocked up and don't need to go anywhere!
I've still no news of he knee op, I see rheumy next week and hoping for some relief from awful bruising inflammatory pain. Just got to keep distracted. Ideas for paintings, but lack the push
I hope you're well - and you can avoid potions that make you react!