Looming Rheumy Appointment

Had the bloods done 2 weeks ago. Don’t think I’m going to get good news bah!

I’ve been to a Podiatrist because I have a lot of foot issues, and with one foot in particular. He gave me the delightful news that he believed that my RA was uncontrolled, so obviously 4 months of Hydroxychloroquine isn’t cutting it. Problem foot is now bad, orthotics in shoe are now too tight hmmmph!

Also currently have a 24/7 finger splint to sort out a flexor tendon problem

This means I’m now faced with Methotrexate, as I’m allergic to Sulfaslazine. Damn!

Not happy, like my red wine, dislike nausea etc., and the Hydroxychloroquine is already causing massive itching and some hair loss. Have a long term depression/anxiety/PTSD problem, which not being helped by any of this RA stuff.

Thinking a strong conversation with Rheumy about foot swelling and immediate reduction thereof is possibly the only positive that’s going to come from this appointment.

It’s a struggle in Australia, we have few support systems in place. You guys in the UK (despite some waiting issues) have so much support - rheumy nurses (what are they ), telephone support and your wonderful online forum, which I’m using right now (Bless the NRAS). Here in OZ, if you have a bad reaction to a medication, you’re on your own, unless you want to call an ambulance - let’s face it, nobody’s going to do that.

So disheartened.

[Mmrr]

YanniBaci, I'm sorry to hear of your situation. It is hard enough here in the UK even with some of the support we have. Thank goodness for the NRAS !

[popsmith1874]

I hope you get things sorted as this horrible disease affects everything and it can be a struggle at times but this forum is a godsend as we all understand what each other is going through wherever we are

[helixhelix]

But maybe methotrexate will be your friend? It has been mine. And yes I stopped drinking for the first 6 weeks or so, but then slowly introduced the occasional drink. And my liver tests have been fine, so I can now drink a little bit a couple of nights a week. And after the first couple of weeks the nausea passed off.

Sounds like you've not got much choice as getting damage is really not good news.

[Benbecula]

Hello there. Obviously individuals have different reactions to the various drugs, but I have been on methotrexate for 26 years and I never gave up the wine. I never drink to excess, but often have a glass with my evening meal. Liver function tests have always been ok, and I seem to think I have read somewhere recently that there is no need to give up alcohol entirely. I too had problems with hydroxychloroquine, scabby and itchy scalp and inside my nose and conjunctivitis. It takes a long time to clear when you stop the drug, as it stays in the system. Don’t be afraid to try the methotrexate and see if it suits you. I have found it an invaluable help, along with the biologic.

Good luck.

[Hidden in reply to Benbecula]

Thank you for that. I just seem to have a tendency for being in the less than 10% who react to medication (of many types), so of course, Methotrexate doesn’t appeal to me, for that reason. The Plaquenil is driving me nuts because I get these random side effects - prickly itching on an arm wakes me up at 3:00am and won’t go away, next time it’ll be my ankle! Wandering around trying to wear minimal clothing in the middle of winter, because I’ve got random prickly itching on my arms and legs - that lasts for 4 hours sometimes. It’d be easier to deal with if there was improvement, but there is zilch.

I won’t dismiss the MTX, but I certainly want to discontinue the Plaquenil. All I want is to be able to do the activities that matter to me. I’m a golfer and physically active. ATM I can’t do a lot of things that are important to me. I’m heading to the place where, if I can’t, then what’s the point.

Thanks for your thoughts, cheers Deb

[Gnarli]

Methotrexate need not mean the end of moderate amounts of red wine and could slow or even halt the damage the RA is causing. I know its got a bad reputation for nasty side effects but you may well be one of the many who don't get any or perhaps mildly. I tried hydroxy and it was awful for me. The heartburn and nausea meant that I could only manage for a few days of it. Tried Sulphasalazine and could only tolerate that for three weeks. Yes, the methotrexate makes me feel a little nauseous but that is so much better than the pain, swelling and agony I had before.

The support I've had from the NRAS helpline and the lovely people on this forum have been an absolute godsend and I'm so grateful that we have the NHS even though it has its faults. I hope this helps

J

[Hidden in reply to Gnarli]

Unfortunately, I’m in Australia, so no NRAS helpline for me and no Rheumy nurses ( I believe there are about 5 specialist nurses in the entirety of OZ) - it’s Rheumy Specialist and then on your own until the next appointment. Bit soul destroying really, cheers

[Gnarli in reply to Hidden]

A proper b*ggeration