Grumpy Update

cthornley

Sorry haven't been around much lately thanks to a combination of a busy work life and rubbish health

Rheumy put me on mtx & ciclosporan a while back .....bleugh not good!
I gave it a chance but after nearly 3 mths no improvement but a whole lot of side effects making me really quite ill.

Just come back from the hospital and my inflammation is up...I could have told her that without the bloods. So ciclosporan is off the menu and now on the road to anti - tnf

Mixed feelings about this - really reluctant to go on it for many reasons but I know that for some people its been great. One of my main worries is the day that it comes down for the test for eligibility that my joints won't be swollen enough.... they have always been very up and down in relatively short cycles, it seems to be a pattern its always been in. The rheumy said this to me, She wanted me to know that she has no doubts that its the way to go and that I am a candidate for it, but she's warned me not to be stoical about the pain (apparently she thinks that after all this time i've just got used to it ) she's probably right but oh i dunno I have my doubts.

I guess we'll see how it goes, I want to have my fingers crossed but i don't dare get my hopes up. I'm not sure I can remember pain or fatigue free its been so long
Chrissie

kathbee

Hi Chrissie

Sorry to hear how you are feeling, and that the latest drug didnt do anything for you. Not one I have tried Cyclosporin.

Last year I was eligible for anti-tnf, my joints were not swollen on the day of the tests. so dont worry about that. Like you they swell often but not all the time. The main eligibility for me was having tried a few DMARD's that didnt work and also my bloods, mainly the Rheumatoid Factor which apparantly was very high.

Unfortunately the Humira, (self injected once every fortnight) didnt do for me, too many side effects so am currently waiting to see what is offered next. I believe Rituximab to be one of the drugs that lots of peeps do well on, but at my hospital its not an option, probably due to resources.

Hope you can get something that works for you and you
feel much better soon.
I dont know how you manage your career and have a child to care for as well, it cant be easy.
I am retired and have a hubby who does the main of the housework, cooking, shopping etc. I am very fortunate indeed.

Kath

dreamdaisy

I was on cyclosporin for about a year (I think, I cannot actually remember but it was a goodish while) before my consultant and I decided that not a lot was happening results-wise. I did get very hairy. :shock:

From what I have read on here the anti TNFs work better the earlier they are given: I am on my third version and although it has done a great deal for the inflammatory markers it's done very little else. I was promised all kindsa things about the humira, none of which have come to pass. :roll: Never mind.

I have never once thought about the possible side-effects. I am closely monitored, any trouble will be picked up sooner rather than later, the only trouble I have had is with bruising but that's my fault for injecting too close to blood vessels. I would say try it. You never know until you try.

I hope all is well with the Cardiologist. DD

mp1952

Hi chrissie

I dithered about starting on an anti tnf but finally bit the bullet and started on humira on Easter sunday and it has worked very fast for me..by the second day nearly all my symptoms had disappeared. It was amazing. I have done the third injection this week and the only side effect really has been a runny nose.

I have to confess to worrying about the longer term side effects and keep my eye on the research from the 'biologics register' which is held by the arthritis research unit at the university of Manchester.

The deciding factor for me going on humira really was talking to two rheumatologists (not my treating rheumy) who both said if if was them, they would go on an anti tnf.

Marion