Gold injections ?

[Prairie]

I'm seeing my consultant in a few weeks time to try me third time lucky i hope on a medication...to control this horrible disease which may suit me...he's not sure himself what he thinks I can tolerate as I've had no luck in the past with couple of dmards one been methotrexate.. He mentioned gold injections.. Which when I've read up on this drug it's not used as much now as we all know there are newer drugs...I'm just wondering if anyone has tried or heard of anyone on this drug... Thanks again Nicola

[summer32]

I had this due to problems with other drugs.. it worked well for about eighteen months but then it gradually stopped working.. it is quite slow to start working also x

[Prairie in reply to summer32]

Thanks so much for your reply...did you find the side effects ok to tolerate I know we all different on different drugs but I couldn't tolerate methotrexate at all..I'm hoping if he does start me on this it will help me...I have to go on something but like a lot of us it's finding the medication which suits...I was just curious about this drug as its an old one..thanks again..Nicola

[summer32]

I didnt have any side effects with this drug unlike some others I tried x

[Prairie in reply to summer32]

Thanks again for your reply...I hope if this is the one I have to try I'm like you as there are some horrible side effects...x

[Vonnie55]

Hi, i had gold injections for about two years until i had stop with it prior to surgery. It worked for me for about two years. The only problem i had was when i was reintroduced to it again after a two year break, i started with chest problems so had to come of it.

What was interesting for me was, it was the only drug i has taken, which brought down my ESR, methotrexate didn't bring ESR levels down, also i had no complications with it.

Good luck if you decide to use it.

Vonnie xx

[Prairie in reply to Vonnie55]

Hi vonnie thanks for your reply. I know we all tolerate drugs differently but it's always reassuring to have some advice from someone like yourself who has been on gold injections...and at first worked for you..That must have been a worrying time for you when second time on the drug it affected your lungs...the scary thing is we don't know how our body's are going to react.. We have no choice really other than to give these drugs ago. I've been reading some of your recent posts and I wish you luck on starting your new medication.. When you mention scoring and been accepted for a newer drug...what does that mean..? Anyhow thank you for your reply and good luck Nicola x

[Vonnie55 in reply to Prairie]

Hi again Nicola,

I think i was referring to the DAS scoring system, (disease activity score) used to assess how the disease is progressing. Its done by a series of questions the rheaumy nurse asks and examination of the small joints in the hands and wrists mainly. I'm not sure if i have explained it well enough for you, you can check out all about it on the NRAS website. There have been some very informative responses to this question by members on this site also.

One of the conditions to be accepted for the anti-TNF drugs, is the DAS score has to be a certain level, i could be wrong but i think it has to be over 6.

I am pleased you have received some good feedback on this drug.

Let us know how you are progressing with it.

Vonnie xx

[Prairie in reply to Vonnie55]

Thanks again vonnie. Ahh I see I will have a read up on it. It's good to be linked up with people like yourselves. I will let you know how I get on...thanks again big hugs tc Nicola x

[Victoria-NRAS Partner Moderator NRAS in reply to Prairie]

Hi Nicola

If it helps, we have information about disease activity score (DAS) on our website:

nras.org.uk/about_rheumatoi...

nras.org.uk/about_rheumatoi...

This is part of the criteria used for the 'biologic' drugs. In addition to having tried at least 2 DMARDs (one of which must be methotrexate), you need to have a DAS of 5.1 or above on 2 occassions, measured about a month apart.

Hope that helps

Victoria

(NRAS Helpline)

[Prairie in reply to Victoria-NRAS]

Thanks Victoria for this very helpful website

[sallyeb]

Had terrible issues with these injections . I had awful diaohrea and meant I only lasted a couple of months. Sorry I couldn't be more positive. I have been through most of the older drugs on my ra journey before I have finished up with lefluomide which at the moment seems to be working ok.

[Prairie in reply to sallyeb]

Thanks for your reply its nice to know what side effects or what works I suppose when we haven't already tried... I hoping it works for me I guess we have to put up with some side effects until our body's adjust. My consultant also mentioned lefluomide but wasn't sure to put me on it as one of the side effects was weight loss and I'm battling to keep my weight on...thanks again Nicola.

[Tillytop]

Hello Nicola

I couldn't tolerate mtx either and I had gold injections for a while, in combination with some other DMARDS (Cyclosporine and Sulfasalazine I think although it was a long time ago and I can't quite remember what I was taking when). That combination seemed to help me and I had no side effects from the gold other than ultimately being "over immunosuppressed" apparently which resulted in a nasty case of shingles. But that may well have been due to the combination of drugs, rather than to the gold itself. I know this is an older drug and doesn't seem to be used that often these days but I would be happy to have it again if needed. I also know of someone for whom it was a real "wonder drug".

You may already know this, but gold isn't a drug which can be self-injected cos it's a deep intramuscular injection so it means regular trips to the GP or hospital (I think my injections were fortnightly but I may be wrong). The injections aren't very pleasant (in fact they flippin' hurt) and I seem to remember the blood test requirements for gold as being quite rigorous (ie they wouldn't give the injection until they had the result of the last blood test)

but I meant what I said above in that I would ask for gold again if I needed to come of my current meds for any reason because it seemed to help with no apparent side effects..

Really good luck if you do try gold injections and hope they help you.

Tillyx

[Prairie in reply to Tillytop]

Hi Tilly thanks for your positive reply. I mentioned earlier its always good to find out what works or doesn't work for some people as we all know we all tolerate things differently. I'm hoping if this is the one I try it helps me. Thanks for your good advice...I'm ok with needles but I always felt sickly when having to inject myself with methotrexate. I feel quite happy that I don't have to do this if my consultant puts me on gold injections. I know this is an old drug but I guess if it works for me with less side effects I will be happy to get this horrible disease under control...thanks again Tilly for your reply...it means a lot Nicola x

[fossil321]

Hi there Nicola, I was on myocrisin (gold) from 1990 until 2008 (18 years). I found it wonderful and was sorry that eventually it rejected me. I started at weekly injections, then fortnightly, then monthly. After which I was so well I quite often went two months !! I am now on biological (Enbrel) which is good but I still don't feel as well as I did on the gold.

[Prairie in reply to fossil321]

Hi there thanks for your reply. I hope I'm like you if this is the one I'm put on. Fingers crossed. Trying something new is always worrying but it's great to hear people's experience on theses drugs. I guess it's what works best keeping this horrible disease under control. Thanks again for your reply it means a lot...Nicola x

[fossil321 in reply to Prairie]

Good luck Nicola