GOLD OR CICLOSPORIN?

[Jeanabelle60]

Well now a few months back I was put on steroids as being sero negative there were no more Bio's that I would tolerate. NOw I was on here a few times telling everyone that I was afraid of these and really didn't want to take them. Lets face it we can hear some stories about what different meds can do to us. Anyhow, I have a brother in America who was quite ill and lived on his own so I started the steroids before going over there to look after him. If I hadn't I would of been any use to him at all now would I?

I have to say that the steroids were in fact great. They allowed me to keep going and except for the odd stab or twitch I was doing really well on them. I think I should say that I have had a mental health problem since I was in my 20's, I'm now 65 and am on a very, very effective medication for that condition. Steroids can have a negative effect on people like me...I was also very frightened of putting on lots of weight, another ongoing problem since I was young. As I have become older I have settled into a weight and eating programme that I'm happy with and didn't want to mess that up either. They were my reasons for not wanting to take the steroids but we all know that with this disease 'needs must'....

Now, the steroids were great but have been waning in the last week or so. So much to the extent that I though I had a tooth infection but it turned out to be my Rheumatiod jaw problems. I now have pain almost everywhere.....so I foned my wonderful Rheumy Nurse Bronagh and she fit me in yesterday. She said doesn' t want to keep upping steroids so she spoke to the Doc and they have decided to have a look at DMARDS again. Two they came up with are Ciclosporin and good old fashion Gold Injections.

Bronagh told me that Gold Injections are making a bit of a come back. I remember a brother-in-law getting them back in the 70's!!

Now I would love to hear from you about you experiences and/or advice concerning these two treatment forms. I did the internet thing and got more or less the same informations as I got from the two leaflets that Bronagh gave me. I would be gratefull for any comments at all........thanking you in advance and hoping that you are all as well as possible. Jean XXX

[farm123]

Hi

I have never tried Ciclosporin but going back a few years I had gold injections between my two sets of kids. Around 1992 - 1999. I stopped due to pregnancy but I do believe my body was getting used to it and it was not as effective for the last couple of years. Unfortunately so much has happened RA wise in the last 3 years I really cannot remember too much about it and probably protocol has changed since then. A nurse at the GP surgery gave the injection and regular blood tests were involved. I am sero negative and cannot tolerate MTX. Farm

[Jeanabelle60 in reply to farm123]

I can't take MTX either. My Rheumy nurse told me that I would have to attend the hospital weekly and blook test weekly too. She told me to read the booklets and decide which I would rather have......they don't sound much different from one another except the hospital visit every week. The Ciclosporin requires weekly bloods too. I think I'll do what I always do and leave it to my much loved and respected Rheumy team......I think going by my history that either of these two options will go down the same road as all the other drugs I've been on, they either don't work, cause some serious side effects or they work really, really well.......for a short time! Awh well, back to the drawing board....thanks for your reply.

[Judetheobscure]

Hello Jeanabelle

Gold was the first drug I was put on in 1976/77 with incredible results ie I felt as good as new from about 12 weeks onwards. There were no apparent side effects but unfortunately, after 18 months or so I had to come off this because it affected my kindneys (that should read kidneys, though I rather like the idea of an organ full of kindness).

I imagine by now the use of this drug might well be refined or dosages adjusted. At the time I understood that many people were able to tolerate this drug for years and with great success so I suppose once again it's a question of whether it suits your makeup.

I've not had any experience of Ciclosporin. Maybe NRAS has some more information on this and the re-emergence of Gold injections.

Good Luck with the choice. Jude

[Jeanabelle60 in reply to Judetheobscure]

Thanks, I will have a look at the NRAR site and see what they have to say. My nurse did say that it has been 'revamped' and made a new comeback so it may well have been modified in some way. Thanks Jude, hope you are well. Jean.

ps love the name Jude......I'm an old Beatles fan!

[Jeanabelle60 in reply to Jeanabelle60]

Meant to say too that I have an 'iffy' liver.....too many years of partying!! That is the reason why I can't tolerate MTX so it could be a bit of a problem down the line......but sure if you don't try you'll never know.......X