Help about which meds as alternative to Gold please.

[Vonnie55]

Hi, could do with some help please.

I have appointment tomorrow with rheumy nurse to discuss medication options. I have seronegative RA and was diagnosed 14 yrs ago. However, my consultant now seems vague about the diagnosis as i don't quite fit the critera, i have some neurological things going on in my hands from my spine. My hands are not like swollen RA fingers, in fact my fingers are very thin and the muscles appear 'wasted'.

In the past i have had Sulphaz, Methotrex up to 25 mgs injected, leflunomide, none of which lowered my ESR, was 40-60. Then i was put on Gold injections which actually lowered my ESR, i was on it for 3 yrs, but was still having flares although more infrequent and pain in other joints in general. I felt it wasn't helping me much and it was stopped anyway prior to surgery on my foot.

After 18months rest from the Gold and my pain and mobility much worse, consultant decided to restart me on the Gold. I should have been given a smaller dose to start with again, but a different nurse gave me the normal dose, which i queried, but was told i would be ok as i had it before.

I then had real difficulty breathing and had to have course of steroids for lungs. I was told by nurse, who after conversation with consultant, said i had reaction to gold, which can soetimes happen after a gap!!!!

Now, he won't give me gold because of it and its back to the drawing board. My ESR levels are rising again since stopping the gold 18 months ago.

Biologics were discussed and at the time, 2 years ago, just missed out on the scores by 2, so couldn't have it.

Any thoughts on which medication as alternative to gold would be appreciated?

[Hidden]

snap almost!!!! my gold stopped working after sixteen months for me.. I couldnt tolerate mtx, or sulpha, in sero negative I am the same but I am being"considered" for anti tnf"

you like me if not considered have penicillamine, least horrid, or azathioprine,. then more horrid drugs such as cyclophosphamise(chemo) or mycophenalate( could you take hydroxy? my registrar said it would be too weak for me?

[Hidden]

Get them to re do das score. book week of work as I have been advised to withdaw all pain relief and steroids to make sure I HAVE MAX CHANCE of passing assessment x

[Hidden]

Two years ago is a long time. As Summer says ask them to retest and you may qualify now. Sounds like a hellish situation - I hope they do something for you very soon. Keep pushing them and good luck. Tilda x

[allanah]

Good luck today hope it goes well x

[Munchkinella]

Wishing you all the best for today Vonnie. Agree with Summer and Tilda, push them to retest you my lovely. Love Janet xxx

[Hidden]

Hi there, I'm with the others on asking for another DAS score - especially if consultant is now vague about your diagnosis ..... DAS is specific to RA so if he's not 100% sure that's what you've got it seems unfair to apply DAS rigidly, could he not cut you some slack? (I believe they do have some leeway).

All the best, Luce x

[Vonnie55]

Thank you all so much for the suggestions and well wishes for today.

Summer, its great to know someone else is very similar to me, these symptoms can get very confusing and are not all associated with flares. I sometimes feel very alone and doubt my original diagnosis of RA, i get the impression they want me to tread water, as they don't know what to do with me cos i don't 'fit the box'

Good idea to redo my DAS scores again, especially now my ESR is on the up and the only meds i'm on are Tramadol & Paracetamol, can't take any NSAI as stomach probs due to long term use, only been on these pain killers now for 18months!

All these drugs are new to me, so i will have to research them, don't fancy coping with the side effects on top of everything else, but something will have to change.

Thanks again and will report to you any news after todays visit. x

[earthwitch]

If he is questioning the diagnosis of seronegative RA, then he might be thinking spondyloarthritis instead - especially if you have had spine problems. If you are female and diagnosed 14 years ago, they might not have considered spondyloarthritis or ankylosing spondylitis (one of the forms of seronegative spondyloarthritis) as it was widely believed that it was a disease of young men. It still is more common in young men, but now recognised that the ratio of men to women is a bit closer and women do get it, but may not be as easily diagnosed.

If it is spondy, then the criteria for anti-tnfs for that are different anyway, so its possible you could meet the criteria.

Don't worry yourself about "choosing" different drugs. There are an awful lot of different DMARDs and anti-tnfs, so your rheumatologist should have enough to choose from that he can offer you something that has a chance of working. Just make sure you have made a list of everything you have tried already, with notes about why you stopped each thing.

[Vonnie55]

Hi again,

Well, i had my appointment this afternoon with rheumy, turned out to be a waste of time really.

She did my DAS scores by asking me some vague questions very quickly and said it was too low. I'm sure when it was last done, it was much more detailed. My ESR from last week was normal apparantly, can't understand it!

She went to ask consultant and he wishes to see me, to go right back through my history, to be able to decide what course of action to take.

The difficulty being the diagnosis, she said things can change as time goes on.

I will report back when i have more news on this, in the meantime i have to continue to control things with Paracetamol and Tramadol!!

Oh, yes, he has tested for spondyloathritis and it was negative at the time.

Thanks again for the support x

[Hidden]

oh gosh.. ruled out spondy? could you have oa and or fibro?

[Vonnie55]

Definately got OA as secondary to RA, Inflammatory arthritis or effects from previous op to foot. Had to have fusion to joint in foot as it showed quite clearly, damaged caused by RA, they said my foot was basically a 'car crash' of a mess!

So, i am very confused about the whole thing.

Was checked for Fibro ages ago and didn't have it then.

I just wish i had a definate diagnosis summer.

[Victoria-NRAS Partner Moderator NRAS]

Hi Vonnie55

We have an article on our website, which lists different medications given in RA and may be of use to you:

nras.org.uk/about_rheumatoi...

Kind regards

Victoria

(NRAS Helpline)

[Vonnie55 in reply to Victoria-NRAS]

Thanks very much Victoria, I will definately check it out. x