no mentions of some of my medication

[jerryc]

i have had Hughes for the last ten years and feel relativly stable with things but after reading some of the blogs and stuff i am confused about differing medications.. more to the point i find no mention of my meds apart from warfarin... i am currently on warfarin,steroids,and azathioprine..i would like to throw the whole lot in the bin but that just is not possible... awaiting atos interview and am so angry that i and others are being put through the needless worry this entails..

[MaryF Administrator]

Hi there, I have APS, but it is relatively low key currently and I get buy on 2 x aspirin a day, however my other four diseases cause me problems and I can't cope with plaquenil for my lupus or sjogrens due to severe allergic reaction, although it suits other family members. However I have just started a new drug which I hope may improve things.. Atos..we all know the whole thing is a farce in terms of correct medical assessment. Best wishes to you. Mary F x

[jerryc]

firstly.. yes i do have lupus so now the medication differences make more sense,thanks a lot for clearing that one up.. the atos thing is just an ongoing attack on people on benefits.. i have chest problems connected with lupus and i have just managed to get my local hospital to catch up with what my body is doing to me.. suddenly after a number of years they have decided to run various new tests again.. i will wait and see what comes from it all. thanks for the reply. i knew that this site was here but i never got to using it. i never really realized how isolated i had got as regard s hughes .... thank you jerryc

[Zaney3622]

I've been on the same meds for about 6 years now. I agree with above we all have different issues. My main issue was lungs - I was on oxygen for 24 hours a day for about 4 years. NOw I only use oxygen at night. My doctors are great. My current meds include: coumadin, prednisone 5mg daily (at one time it was 80mg daily!), and cellcept (500mg 2x day) this is an immunesuppresent drug. Good luck. But know that this disease affects us differently, so our medications may vary.

[TrishM]

Hi Jerry,

I just thought I'd chip in, if it's at all helpful.

I was disgnosed with APS last year and subsequently put on various doses of - amongst many others - steroids ( prednisolone) and immunosuppressants (Hydroxychloroquine and Azathioprine).

My consultant, Prof. Kamashta has very recently suggested removing the Azathioprine because he considers that I am Primary APS (without Lupus) and after a year it hasn't shown any significant improvement in my symptoms or results. He does recommend, in my particular case, that I stay on Hydroxychloroquine though.

Hey ho...onwards and upwards. The goal is there, just don't give up on it.

Trish.