Log in
22,364 members17,759 posts

So unwell!

Been having a real hard few days and rhemo won't see me and well my gp hasn't much 2 say or do 4 me with lupus and fibro. Kilt with pains and keep fainting lupus rash has appeared on my face again was rushed into a&e yesterday but all they did was check my bloods give me fluids and home, I even fainted coming out the hospital door so they put me in a chair and pushed me out. My steriods have been upped to 20 mg I was on 10. How long will this take to kick in? Really think am ready 4 a nervous breakdown and 2 make it worse my work is forcing a date out off me of when am gonna go back to work even low I have a sick line in 4 the next 8 weeks !!!!

6 Replies

Hi Ruth, it sounds like it's time to change your rheumy if they won't see you. I changed mine when she insinuated that I was swinging the lead and have never looked back.


Hi Ruth

So sorry to read you are very poorly.

It shouldn't take too long for the extra dose of steroids to start to work , a few days for it to build up. I agree with Margaret you need a new Rheumy if they won't see you!. Why is that?. If your worried could you talk to them on the phone?. Sounds like your GP needs their guidance too could he not talk to them especially if you don't improve?.

I hope you feel better soon.X


Lupus plus fibromyalgia is very unusual and it may be that you are suffering from SLE with lupus myositis - the symptoms would mimic the coupling you suggest. Not all Rheumatologists are au fait with Lupus so you may wish to consult a specialist in the disease. 20mg daily of prednisolone is a relatively low dose for lupus in exacerbation - I usually have to up mine to 80mg in a reducing schedule - you will know if the dose is correct as the symptoms should disappear within a day.


I forgot to mention that employers consider a sick line of more than 4 weeks with suspicion; it means that the GP cannot be bothered to review you regularly and that augurs badly for future employability.


I am a veteran( 12 years) Put your steroids up to 25 mg then increase by 5mg until the symptoms are better. They should kick in in 24 hrs if you are taking enough. I have stopped flares like this. You will learn to listen to your body and be able to stop flares before they take hold. You need a new rheumatologist. If you can afford £200 go to see one privately. I had to do that in 2002 after 4 years of getting nowhere. They should l take you on their NHS list after the first consultation. I hope this helps. You can get help from the Lupus nurse online from ST Thomas's Hospital.


Hi Ruth_lderry,

Have you had a look at our employers guides for lupus? You can download digital copies at lupusuk.org.uk/latest-news/... or you can send me a private message or email paul@lupusuk.org.uk with your name and address if you require physical copies.

They may help your employer to understand lupus better, and will give you better insight into your rights as an employee.


You may also like...