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[Guest guest]

Hello Everyone,

My name is Debbie and I am from just near Sydney in Australia.

I was diagnosed with a very rare form of Rheumatoid Arthritis (Entro

or Enthropathic). This started about 6 years ago but I was diagnosed

around 6 months later after numerous tests. After all these tests I

was told there was no specific medication for this so they just trial

and error with the normal med's for severe Rheumatoid.

There are only around 20 people in Australia with this and less than

500 world wide.

I would love to know if anyone on this list has this form of

Rheumatoid or you know some one.

I don't know what to expect from this in the future and the doctors

can not tell me as there are not enough people in one country to do

studies.

I do not suffer any more or less than someone with bad rheumatoid but

I am finding that there is more to this every month with my own

experiences.

I went off my med's for a operation (total hysterectomy). The doctor

told me to stop them 2 day's before but to start them again the night

after the operation. I was in a lot of pain before surgery but

nothing after. I went back on my med's that night and I thought every

thing was back to normal. I came home 8 day's later and had the first

day at home and I was fine. I woke the next morning in agony and

could not move. I was like this for 4 week's with the local nurse

coming around twice a day to wash me and get my medications.

My family and friend were here to help me in every other way but the

pain was the worst to date I have ever experienced. When I started to

be able to sit and stand with support I had rails put in on the

stairs (out-side)and the shower and toilet. In total I was like this

for 3 months. It turned out it was a major flair up of the arthritis

for which no one was expecting. Not even the Specialist.

I am of interest to the doctors because it is so rare this form and

they don't get to see this.

This effects from my jaw down to my toe's

Great lot of help to me.

I have had a knee reconstruction 4 years ago but it is back to as bad

as it was before and the other knee is just as bad now. My hip's are

a major concern and my feet. I have huge lumps in my muscles in my

arm's and leg's and large dint's. They tell me it is all from this

form of Rheumatoid A.

I have other problems as well. Crohn's Disease, Glaucoma and Eschemic

Heart Disease.

My medication's for the Arthritis are as follow.

Methotrexate Injection's weekly ............25 mg

Dolobid 500mg .............2 tab's twice daily

Plaquenil 200mg ...........1 tab twice daily

Prednisone 5 mg ...........1 tab daily

Has gone as high as 180 mg daily

Folic Acid .............10 mg daily

I was on Celebrex but they did absolutly nothing for me.

My pain med's are.

Panadine Forte....3 tab's every 4 hour's

Endone.......2 tab's as required (usually twice daily)

Tramal.......150 mg.....1 tab twice daily

Morphine tab's 60 mg......1 tab when required

I am on a heap of other medications for my other problems and I am

sure I rattle when I walk.

I have been on these set med's for 18 months now and they seem to be

doing most of the job so far. I still get exhausted very easily and

there is very little I can do with my family but they are very

understanding and supportive.

Sorry to go on and on but I did not know how much you would what to

know straight off.

I hope some-one can advise me and I hope I can be of some help to

others. Just looking to talk this through with others in a similar

situation.

Thank you for taking the time to listen.

Debbie. (Australia)