Penicillamine

[Mackymay]

I was diagnosed with seropositive RA in July 2020 and since then I have tried methotrexate tablets, methotrexate injections and leflunomide, all which had adverse side effects. I can’t take sulfasalazine due to tinnitus and vertigo. I am currently on hydroxychloroquine which I am tolerating however it is not doing enough and I still have symptoms. I have just had a phone review and they have now decided to start me on penicillamine. I don’t know much about this drug however from what I’ve read, it is not prescribed much anymore due to toxicity! They told me they’re running out of options for me. Does anyone have any experience of this medication as I’m feeling quite anxious about it.

[KittyJ]

Blast from the past there Mackymay. I was on penicillamine many years ago now. It’s always worth trying any meds that you are offered as even if it doesn’t suit one person it might be the magic drug for you. You will be monitored of course too. If you read up about any drug you will find terrible side effects but of course they may not happen to you. Let us know how you go 🤞🏻 for you

[allanah]

I agree with Kitty, they must have a reason for offering you the drug xx

[oldtimer]

Are you not eligible for biologics then? That would seem to worth exploring next?

I'm stuck on DMARDs too and am on azathioprine (after having problems with other DMARDs over the many years). This helps but doesn't stop some flares and I have to have steroids as well. Not ideal.

[Kags1068]

Hi there Mackymay

Penicillamine really is a blast from the past. I took it for about 5 years from about 1984-1990, between the ages of about 15-20. It was commonly used then after you had first tried gold injections. I took it on it's own for about a year, and then (because the disease was very aggressive) my rheumatologist added Salazopyrin (sulphasalazine) to it after sending me for a second opinion from a paediatric rheumatologist. I used to take it first thing instead morning every day. It did make me feel nauseous, but other than that I had no major or long-term side effects. I was taken off it when Methotrexate became widely available for RA. As others have already said, all the rheumatoid drugs can cause issues, but you will be closely monitored and there's every chance you'll be absolutely fine. I can appreciate you may feel a bit apprehensive though - I think that's a natural reaction. As other members have said, your docs think it's worth trying and fingers crossed, it may be the drug for you. Good luck. 😊

[HockeyNut]

I use Cimzia which is a biologic, rogether with 1,000 mg sulfa per day and 7 mg methotrexate per week. Feel pretty good on that. You can do combos.

[Hidden]

D penicillamine gosh I was on that donkeys years ago. I don't remember any side effects. I'd give it a go then if you don't tolerate it hopefully you'll be offered biologics. You never know it may work for you. Fingers crossed 🤞