Quantcast

Living with Psoriatic Arthritis (PsA)

Frances is famous!

I’m so glad I got to meet @Frances last week before she got famous! Check out her Creaky Joints interview https://creakyjoints.org/symptoms/psoriatic-arthritis-foot-pain-frances-downey/?utm_source=facebook&utm_medium=organic&utm_campaign=symptoms here

3 Likes

Nice Frances, good job. :+1:

1 Like

BUT more importantly she has great taste in wine! really enjoyed meeting you in person and the effort you made to join our gathering… It was the high-lite of the week for me!

2 Likes

Wow, great article, Frances! We should have asked for your autograph while we still could! What strikes me (bang on!) is how similar my diagnosis experience was to yours. I, too, bolted to a podiatrist when I couldn’t take the foot pain any longer, and it was the podiatrist that steered me to a rheumatologist via my GP.

I’m with tnt: meeting you and the DC members who managed to battle the traffic was the highlight of my week as well. It was wonderful.

Big hugs to you

C

2 Likes

Fabulous interview @Frances. Love your ‘firing’ of doctors who don’t hit the mark too.

2 Likes

Great interview, Frances and some excellent advice for people starting out on this PsA journey.

My PsA started in my feet too; every single morning I’d keep thinking that I was hobbling out of bed like a little old lady until it finally drove me to the doctors.

I’d add something for UK members … just because you’re being treated by the NHS doesn’t mean you have to accept inadequate rheumatologists and can just as easily ‘fire’ them and move on to someone who is a PsA specialist. And there are at least three of us here on LWPsA who have done just that.

2 Likes

Made me laugh @Jules_G, (putting my hand up) as I’m one of those in the UK who did just that too. :grinning:

Guilty as charged! Worked out that I’ve seen 6 rheumys in 7 years. Would anybody like a copy of my illustrated map ‘A Partial Guide to Rheumatologists in the South of England and the Midlands’?

Nice job @Frances! And how lovely to see a proper photo of you.

3 Likes

@Poo_therapy @Sybil … And haven’t we all seen a turn-around in the quality of our medics and treatment as a result !

2 Likes

Yes miraculously. Actually it was you guys that persuaded me to do that. And for that I’m ever grateful. Seriously. It changed just about everything for the better.

I’m just reading this - thanks for noting my article. My 5 minutes of fame and it’s about PsA! :slight_smile:

2 Likes

Thanks Poo Therapy!

@tntlamb It was the highlight of my week also! It was great meeting y’all in person! Thanks for making the effort and reaching out.

Just reading this Stoney - I’ve had a bad month with PsA. Struggling to get through each day with debilitating fatigue, physical therapy still for my hip replacement that isn’t going well.

1 Like

Ugh. I’m sorry. I’ve been dealing with a flare since I was in Maryland. Not much fun.

I hope things settle down soon. Can I ask, was the hip replacement due to the PsA?

@Amos my Rheumy thinks the hip replacement was due to PsA, but the surgeon couldn’t tell me what caused it. I’m 55 and I think it was caused by PsA.

@Stoney I’m sorry - that’s a long time for a flare! Are you taking anything to calm it down?

Sadly I’m still on steroids. I had started at 20mg a day for a week, decreasing by 5mg per week. But when I stepped down to 5mg my symptoms were nearly as bad again as when I started. This week I’m back down to 10mg, and am doing pretty well. It looks like the colchicine is finally kicking back in, so that’s why my symptoms are not returning again. So incredibly frustrating. And now I’m on the doctor merry go round, because I have a some other issues going on, including the need for a nerve conduction study for ulnar neuropathy, and carpal tunnel. Fun times.

I’m still hoping, too, that when I see the eye doctor next month that we can make plans for cataract surgery.

1 Like

Never heard of colchicine - had to google it. Is it better than prednisone? I’m glad it’s helping and giving you relief - you deserve it!

I’m taking 10mg prednisone/day for fatigue. Can’t get off it - every time I try I can’t move because of fatigue.

The colchicine is technically for gout, but it’s also used for chronic pericarditis and pleuritis. Much better for me long term than prednisone.

1 Like