Rheumatology update: Just to update in... - Hughes Syndrome A...

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Rheumatology update

Chris1802p profile image
14 Replies

Just to update in case anyone is interested, following on from previous posts. I had my consultation at London Bridge yesterday with a new rheumatologist as my previous one had left. PM me if you want to know which rheumatologist.

He was very thorough, and has diagnosed me with Psoriatic Arthritis. My neck and spine are very stiff and he feels there are arthritic changes there contributing to my many headaches and migraines. I am already on 200mg hydroxychloroquine (can’t tolerate a higher dose) and that seems to be keeping my skin and joint flare ups under control, but my headaches and fatigue are unchanged.

Because I previously had a weakly positive LA, (followed by another weakly positive 7 weeks later and then just negatives subsequently) he said I should take low dose aspirin every day just in case. He has also added Mepacrin (?sp) 3 times a week to help with the fatigue, and gave me a rather undignified steroid injection in the bum. 😂.

He also said I should be receiving more treatment for my headaches/migraines (I get up to four a week) so he’s writing to my gp for referral to a specialist clinic in my area for that on the NHS.

He also gave advice about taking magnesium and doing Pilates for my stiffness.

A successful outcome I feel.

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Chris1802p
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14 Replies
MaryF profile image
MaryFAdministrator

Well done, I am glad you are pleased with the outcome, good you have been told to take Aspirin, and presumably you can stay in touch should things change in any direction? MaryF

Chris1802p profile image
Chris1802p in reply toMaryF

Yes, I’m seeing him again in 4 months

Jillymo profile image
Jillymo

I also went to London Bridge some years ago now to see Professor Hughes who is now retired. It was the only time I felt somebody understood what I were going through. Consequently I was given a diagnosis after years of ill health.

I am thrilled to hear you feel as if you have achieved something, I hope your follow appointment will just as rewarding.

Good luck

Chris1802p profile image
Chris1802p in reply toJillymo

Thank you so much

Chris1802p profile image
Chris1802p

PM’d you with specialist name. I do have psoriasis but not widespread, I’ve been on hydroxy a year with no flare ups so far. They’ve run LA test twice since my weak positives and I don’t think they’re keen to keep doing it as I haven’t had any clotting events. But he has put me on aspirin anyway, which is what they normally recommend for positive LA people who’ve not had miscarriages/clots

chelb29 profile image
chelb29

Hi can you please also pm me who you saw, thanks

HollyHeski profile image
HollyHeskiAdministrator in reply tochelb29

Hi chelb29, been a while, how are you?

chelb29 profile image
chelb29 in reply toHollyHeski

HI! Not great still trying to sort symptoms out years on, never ending issues and problems. U?

HollyHeski profile image
HollyHeskiAdministrator in reply tochelb29

I'm sorry your still having problems, happy to chat if you want to.

Take care xx

Chris1802p profile image
Chris1802p in reply tochelb29

Sure

Louloubug profile image
Louloubug

I could not tolerate the med. It made me feel like I was crazy.

Humaria, will change your life.

Chris1802p profile image
Chris1802p in reply toLouloubug

Which couldn’t you tolerate? Hydroxy? I’m definitely not at the stage where I need Humira, and I believe that’s only used once other options have been exhausted due to potentially serious side effects?

Honeymonster profile image
Honeymonster

Hi Chris,

That sounds a very thorough and successful consultation.

I would love to know which rheumatologist it was, if you don't mind sharing.

Thanks,

Honey Monster.

Chris1802p profile image
Chris1802p in reply toHoneymonster

Of course, I’ll PM you

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