Rheumatologist tel consultation

[2013mayo]

Hi everyone,

I spoke to my rheumatologist yesterday and had a very odd conversation with him, although he’s quite pleased with my progress re GCA he now wants me to start on a treatment used for lupus, apparently I have very high levels of antibodies, ANA positive, I thought high levels was a good thing but he tells me mine are way too high. I’m confused, he’s keeping me on pred for my GCA and was rather cross I’d not been taking my risonerdrate, I’ve promised to start taking it now, but I’m confused over the new treatment, hydrochloride, I thought this was for malaria, apparently it is but it also treats lupus type of diseases, he’s not saying I’ve definitely got it but says the medication will help with some of my symptoms, ( mouth ulcers), and so on.

[SnazzyD]

You mean Hydroxychloroquine? As you can see in the link it is used in lupus and some people here have had it as a steroid sparing agent to try to reduce their steroid dose when used in conjunction with Pred. More commonly they use Methotrexate or Actemra but given they think this might be lupus as well, it doesn’t sound unreasonable, from my laypersons point of view. mayoclinic.org/diseases-con...

I can’t remember, have you had a DEXA scan ever? If not, I’d request one, if only to get a belated baseline.

[2013mayo in reply to SnazzyD]

Hi,I’ve never been offered a dexa scan. He did want to put me on methotrexate , actemra (I was on this for a year), but decided on hydrochloride.

I’ll see how it goes.

[SnazzyD in reply to 2013mayo]

It seems that people often have to ask. I refused to take bone meds until I had one.

[2013mayo in reply to SnazzyD]

I’ve just found my old supply of them, reluctantly I’ll start taking them again 😟

[SnazzyD in reply to 2013mayo]

I would still strongly request a DEXA because you need to know how much your bones are affected by Pred in the future and how much your bones may already have been in trouble or not as the case may be. Due to my early on DEXA I was able to see that in the 13 years up to Pred I lost 10% bone density (due to other factors) but still didn’t need bone meds and lost a further 3% during the 4.5 years starting on 60mg Pred. Still not quite needing bone meds. Had I not had the scan it would have looked like I lost 13% in 4.5 years just due to Pred.

[Mrsd12f]

Hi. I’m on hydroxychloroquine for Sjögren’s syndrome, another autoimmune condition, which was diagnosed at the same time as my PMR. SS is similar to lupus, in some ways, so that’s probably why he’s prescribed the HCQ.

[2013mayo in reply to Mrsd12f]

Thank you

Quite interesting, really confusing it’s taken them 2 years ( I was confirmed ANA positive at the start of GCA) to decide this but from what I can make of it my anti bodies results were extremely high in this November?

[SnazzyD in reply to 2013mayo]

Unfortunately things change or have been lurking just under the radar until now.

[PMRpro Ambassador]

Depends what the antibodies are against - if they are to protect you against disease, more is better, If they are against your own body tissues - not so much!

"An autoantibody is an antibody (a type of protein) produced by the immune system that is directed against one or more of the individual's own proteins. Many autoimmune diseases (notably lupus erythematosus) are caused by such autoantibodies."

Don't know your background - this is a lovely summary but might make your head hurt

ncbi.nlm.nih.gov/pmc/articl...

Having these antibodies isn't always conclusive - many perfectly healthy people can have them, but the key is in the degree. It sounds as if you may have been in the very early stages originally and the level wasn't high enough to say it was trouble.

It may be an example of my definition of a/i disease - and you have 2013mayo syndrome ...

[2013mayo in reply to PMRpro]

HiYes I was ANA positive 2 years ago but no one said anything then but now I’ve had blood test in November he said antibodies were extremely high and it was not a good thing.

Thank you for the info, I’ll read up on it

[PMRpro Ambassador in reply to 2013mayo]

The LupusUK site and forum are very very good.

[2013mayo in reply to PMRpro]

Thank you 😍

[SheffieldJane]

We are all unique to an extent. I hope it works beautifully.

[2013mayo in reply to SheffieldJane]

Thank you😍

[AshPen9]

I've just been prescribed Hydroxychloroquine for Spondyloarthropathy. A shortish course of steroids which should have worked, didn't. I therefore need a 12 month course of something. The choice was between more steroids and three Disease Modifying Anti Rheumatic Drugs, hydroxychloroquine being one of them. My rheumy says that it is well tolerated and has been around for 50 years. He said it 'calms the system down'. Common side effects are loose bowels and a rash. He said I would definitely know about the rash if I get it. Good luck with it and your GCA journey.