Still hopeful......

[Tinat3]

Hi all. Hope you are coping well in this heat!

Had my 4 week visit with the Rheumy Nurse yesterday which helped me a lot.

I've been on mtx now for 15 weeks and my symptoms are getting worse rather than better. Not sure if this is due to coming off steroids 5 weeks ago which I had been taking since January.

Due to the nausea, headaches and extreme hair loss, she thinks it would be better to come off the mtx and try Leflunomide instead. Have also been on sulphasalazine which did wonders in six weeks but unfortunately I reacted very badly to with the sun in 7° weather!

Part of me would like to keep trying the mtx but as the nurse says, it isn't having the effect is should on my PsA. My DAS score had gone from 3 to 14 in 4 weeks with a very sore swollen elbow and other joints.

I'm desperate to return to work as I have been off now for 6 months and I have a meeting with my Headteacher and HR on the 14th for a written warning about my absence. I know that my Head understands and sympathises about what I am going through and that this is protocol but it doesn't stop the anxiety about desperately trying to get better.

I have an OH app with a doctor within the next two weeks so will see what that brings.

When diagnosed in January I never dreamt that this far down the line I would still be struggling and not at work.

I have always remained positive with the expectation that I would be as near normal as I was with the help of the medications. I'm still hopeful that this will be the case, I'm not bloody ready to give in to this crappy disease for a long time!

Is anyone else taking lefluno mode and how do they find this please? ?

Have a lovely day

[ballyboy]

i was leflunomide for 6weeks but had ci am on steroides ome off them as my bp went very high .i am on steroids for 10 years and can not get off them .do you know any other thing i could take.

[Tinat3 in reply to ballyboy]

Yes have read that it can make your blood pressure high. Mine is always raised when I get it done at the hospital so should be interesting!

[popsmith1874]

I know how you feel I'm on Metz and sulfasalazine been on them since November and am worse in stead off getting better ,went to my Reims appointment last week and doctor decided to wait another 3months before they change anything I've been off work 3 months now so just waiting for a letter from hr to drop through the letter box,no way i can work at moment as I'm a manual worker

[Hidden]

I too am very hopeful about returning to something close to my normal life. I was diagnosed last November and was assured that hydroxychloroquine would do the job...it didn't..I am now starting my 5th week on sulfasalazine with hydroxy. I have not noticed any change in my swollen hands or feet.... I might have to go on lefluomide in a few months.

[Tinat3]

Its rubbish isnt it Suzanndale. I dont want to keep swapping my drugs but really havent a choice. Think im running out of options now lol. Will let u know if they put me on leflunomide how i get on x

[gillpalmer]

I was like you on metz for two years tabs and then injection had to stop because of side effects Went onto Leflunomide and have had only one problem. I had to stop for a few months as my white4 cells went very low after three months went back on and have had no problem for the last 2 1/2 years. Hope they get you sorted.