update

[Guest guest]

Hi All,

It's been a while since i contributed as I've got my son, daughter in

law and grandaughter moving in with us this week. By the end of

the week, there will be 6 adults and living here. Been busy

finding space and moving rooms etc, well I've been doing the organising

LOL. So far so good. Anyway, I'll get on with my update.

Diagnosed with RA 1997 and commenced on MXT tablets 25mg per week

(YUCK), plus Etoricoxib 120mg daily and Dihydracodeine 120mg daily and

Amitriptyline 25mg nightly and Folic acid. Progressed to Sulphasalazine

6 tablets daily and Leflunomide 25mg daily plus Etoricoxib 120mg,

Dihydracodeine 120mg and Amitriptyline 50mg and Omeprazole 20mg in 2000

and Prednisolone IM injections every 6 weeks,( with much weight gain) as

I became much worse and more or less bedbound for the next 3 years and

unable to walk with lots of joint damage in hands, feet, knees and hips.

Then in early 2004 commenced Humira injections plus all the above, but

Humira had to be withdrawn after 3 months as I became much worse. I had

to get a total hysterectomy as I had a 10lb Fibroid growing in my womb,

which was thought caused by my medication. From 2004 til March this

year, my meds consisted of Sulphasalazine,Leflunomide,Etoricoxib,

Dihydracodeine, Amitriptyline, Omeprazole and large doses of

Prednisolone IM injections every 6 weeks. In March this year I started

50ml Enbrel injections weekly, and had a marvelous 2 weeks which saw me

improving and being able to walk outside for the first time in years,

previously I could only go out in a wheelchair. Now, is a different

story, the Enbrel has stopped working and given me a few chest

infections. I had a Rheumy appointment 2 weeks ago, and got a lot of

blood work done, resulting in me now possibly having another auto immune

disease and the RA is now affecting my eyes(the gel part is

disintegrating). I am back at the hospital 5 August, when it will be

decided where they go now. Apparently, there is a drug that's not

licensed yet, but there is talk of me trying it. I'm still trying to

think if that's what I want to do as it's a lot to get my head around.

Normally, I'm quite a positive person, but this has got to me.

I hope, for anyone newly diagnosed, the above doesn't deflate you, as we

are all different. Some of us (the minority) have problems getting the

right cocktail of drugs. There are plenty of good drugs around, but some

of us just take longer to get there. I know I will bounce back, but for

now my wings are clipped lol.

Anyway, I have a lot to be thankful for, I have a good supportive family

and the most gorgeous 5 year old grandaughter, who I'll be able to see

every single day and night for the forseeable future. God sent her to me

as a gift, far better than any medication.

Love and hugs to you all

x