Hi Jenni i have tried Azathioprine a couple of years ago but i had to come off it as it didn't not work for me, i too have unusual RA i am told as i also have Lupus the joints that have been affected badly are knees, hands wrists , i am getting pain in my back which i think is my right hip this happens every so often , there are more but not as severely, i also have Ibs , osteopenia due to long term steroid use and have been having extreme pain in my abdomen every month for a couple of years i have seen a gynecologist last March and a bowel specialist too had a ct scan done and they found a cyst in my left ovary he said not to do any thing and see if the pain went away , well it hasn't and i actual fainted last week this time its my right side i have an appointment on February the 11th to see another gynecologist i dont know if it polycystic ovaries or endometriosis but i do no i can not put up with that pain every month and need some thing doing, i just wonder is it all the medication i have been on all these years that have caused all my problems.

Sophie x

Hi jenni

I'm sorry I can't help with your query, but just wanted to say that I hope your new treatment will work really well for you. It really is time that you had some respite from all your problems

Love Lyn

Hi Jenni, wow!!! you really are going through it!!
I was told my RA was not reacting as normal. Thats when they looked into MCTD. I dont get redness in the joints, but alot of pain and swelling. The rheumy said its not the usual symptoms for RA, but still waiting for more test results.
At the moment nothing is working and having maj0or problems getting seen. Take care Jenni, I hope the new meds work for you, will be thinking of you x

Hi Jenni,

I would say reading your post that your RA presents itself as almost Lupoid too. It is strange that you have so little erosions but then, as we all know RA is infamous for it's mysterious nature.

I also have strange RA. Having had it from a small girl I have also been told I have much less erosion in my knees that should be expected. That said it attacked my hip so severely that I went from never having a twinge of hip pain to (apparently) substantial erosion there too!

In it;s presentation it is also odd- I have hardly ever had finger and feet pain which is (usually) the starting point for RA. It has only concentrated itself in my knees and elbows, then my hip and at times my ankles!

Due to the auto-immune factor I would say that many people have what they perceive as 'odd RA' as we are all so very different and unique.

Love,
A

Wow, that makes me feel lucky to have relatively ' normal/ standard' RA! The thought of all that systemic inflammation is quite scary - no wonder you feel so poorly. I find it amazing how the medics keep on finding drugs to fling at this disease - I just wish they weren't so toxic and cause as many problems as they solve.

I agree with Amanda, that the very nature of auto-immune disease tends to make us all so different, with some parameters of common ground. Although new to RA, my endocrinologists for the last 20 years have scratched their heads and described me as one of their 'very complex' cases!

My very best doctors are those who have looked outside the box and treated me creatively and individually. I've learnt from you all that RA is no different and feel lucky that I hit upon a similar rheumy first time.

I hope it has helped having that honest conversation and logical explanation with your rheumy and the new drug does help.

take care
Alison

Dear Jenni,

I am so glad that there was something left on the shelf which is to be tried in an effort to help you. When do you start and how is it delivered?

With the serious kidney problems that you have endured, and also the family link, it is more than possible that you do have lupus but I suppose that it is the problem which presents as more serious at this time which needs treating primarily. The name of the condition does not matter so much as getting you some decent quality of life my darling.

Hope that it is all happening soon and that it is successful.

Eleanor x

Hi Jenni,

I have a very similar problem. My Rheummy has said I've got about 95% RA and a little bit of something else thrown in for good measure, probably Lupus.

Apart from all the usual RA compaints, I have quite severe inflammatiion of the lungs, bowels and my eyes are affected too. Like you, the damage to the joints is minimal by average standards.

I have recently had to stop Infliximab (anti-TNF) because I developed an allergy to it and the Rheummy has suggested I start Rituximab (another biological drug) as it is one of the drugs that would be most helpful in treating the inflammatory side of the disease that seems so active. My first dose is on the 1st of Feb so I'm hopeful that it may do the trick.

I think it may be a good idea to have a chat with your Rheummy about the biological treatments that are available and perhaps you can talk through the possible impact on your other organs.

Hope you start seeing some light at the end of the tunnel and those wrists start to go down!

Joanna