Update and Thankyou

General
1

Just a quick update and a huge thankyou.

I’ve really appreciated everyone’s help (particularly from those who have been on this roller coaster so much longer than me).

The advice so many of you gave me when I was trying to decide on a promotion when things were headed steadily downhill helped me keep my sanity.

I did take the promotion, and was just hanging on by my fingernails, and just over a week ago had finally accepted that it wasn’t sustainable unless something changed.

Then last week I finally got my hands on Enbrel. I’m sure it doesn’t happen for everyone, but there was an enormous change literally overnight. I took it at 6.30pm, and woke up the next morning almost symptom free.

I’d been having a pretty good couple of weeks, and before the Enbrel I didn’t think I was stiff, just a bit of a niggly pain here and there. After the Enbrel I felt positively floppy!

I got to play chase with my little girl, laugh again with my husband - so very exciting!

There have been a couple of slight side effects, but nothing I wont happily endure for these results.

I was supposedly a MTX responder, but always still felt unwell and exhaused from the disease while on it. Finally I don’t have the sensation of being sick - and I seem to have so much more stamina!

Now I’m looking forward to the next injection (Wednesday night), because unfortunately it had started wearing off by Saturday night, so bits of me are starting to feel a bit shabby again. Hopefully a few cumulative doses and it won’t wear off as fast.

So again, a huge thanks to all of the people on this forum who helped me keep my sanity while I was looking for some hope (and I’m sure still will in the future).

2

Dear Jen,

I am so very glad to hear that Enbrel is making a difference, I started out feeling fabulous too, then I began to feel a 'drag' a day or two before my next shot, still do sometimes. So I know for sure that it is working.

My Rheumatologist wants me to use it another 6 months (9 in total) before he decides to keep me on it, this will take me to the end of January, so it will be tested this winter. I am on the max dose of 50mg, he said there is another med I can use 2 shots a week if necessary, did not mention the name, but wants to give the Enbrel a chance, and so do I, it is the first drug from the Rheumatologist that did something positive for me, and I am very grateful!

I still have some good days, and even some very good days, much depends on the weather with me and it always will, I have to expect and accept this, and know that there will still be bad days, and movements that will give me pain, as there is a definate dysfunction of the spine, and I also have to consider that this is not my only autoimmune disease, so I have to be realistic.

I hope that you will get that fabulous feeling back, just remember even though it is working, you still cannot wear yourself out! I know it's difficult not to go for the feel good while it is there!

Wishing you all the best,

SK

3

What wonderful news, JenAus! Thank you for sharing it with us. Your story gives the rest of us hope too.
Seenie

4

Wonderful news! Thanks so much for sharing! It's great to read stories of good outcomes and improvements in people's lives! :) I hope you continue to improve!