Hello all

I just wanted to tell you about my positive appointment yesterday with my new Rheumatoid Consultant. We are very lucky in the Telford and Wrekin area to have been given a new building for our RA team and we now have two Consultants, RA Nurse, Practice Nurse, Physiotherapy and Occupational Therapy. The RA service is open five days a week and you can always get hold of someone. I would highly recommend our service to anyone who is looking for an alternative.

I saw my new Consultant to discuss my next stage of treatment. I failed on two anti-tnf's last year and as I had a knee replacement in January I have had to struggle on with Methotrexate alone. I did go into "remission" following my operation but for the last five weeks my RA has been as bad, if not worse, than when I was first diagnosed. I am having to take Tramadol during the day whilst working which I have never had to do to try and get the pain under control. Unfortunately it is not working very well. After a long discussion with the Consultant he said my next option is Rituximab by infusion. He said that this was the strongest thing he could offer which is available on the market. He said other versions of this were available but if I failed on this he could not see that the others would work either. He did mention that they were running a Research Trial in Telford and that I may be eligible for this if I fail on the new medication.

I am getting to the stage that I will try anything to try and get this under control so that I can continue working. I am the only bread-winner in my family and we all know that getting benefits is going to be harder and harder.

I am now waiting for an appointment in two weeks with the RA nurse so that they can re-do my DAS score - NHS protocol for being eligible - and then waiting to see when they will do the infusion. I have been warned of the possible side effects but nothing ventured nothing gained.

Here's hoping ...........

Jackie
xx

Hi Jackie
So pleased things went well at your appt.. I was in hospital today having my infliximab infusion and got chatting to a man who was having Rituximab and he said it was a wonder drug for him as he had failed on so many others and 2 years ago was in a wheelchair..Now he goes line dancing!! So lots of positive thoughts and fingers crossed for you!! xx

Hi Jackie

Glad you had a good appointment. Your support team seems on the ball. You must take a lot of comfort in that

Good luck

Love Sheila x

Hi Jackie - hope you get through all the hoops soon so can get started. Glad to hear Telford has got itself sorted re RA - we used to live there before I had problems with RA & the healthcare I did have there incl 2 carpal tunnel ops and having my 2 girls was excellent. When I had my 2nd lot of Rituximab in April (in Hereford where we nw live) I met someone from North Shrops who has been coming all the way to Hereford since her Shrewsbury Consultant left some years ago so she'll be pleased to hear you news that they've got it sorted now. Hope rituximab works for you - whie its not made the RA go away its a lot better than it was on Humira, and despite having a reaction 1st time, since then i've got away with just a very slight increase in temp while having the last pair of infusions. Good luck!

Jackie

Sounds great., A lovely bit of pampering . Just what you need. - Great.
I had a pedicure last week and have a very dark plum colour varnish on my toe
nails with my big toe with nail art of a small 'light flick' in white . Enjoy

Rose

Oh Rose - you hussy you - dark plum toe nails AND nail art! xxxxxxx

Just want to wish you lots of luck Jackie! Everything crossed for you xx