Plaquenil and Connective Tissue Disorder?

[KittyB52]

I saw a rheumatologist before Christmas as my GP suspected I had fibromyalgia, and the rheumy seems to think it's Connective Tissue Disorder. She's prescribed Plaquenil, which I haven't started to take yet.

I would like to know how it helps, as the joint pains I have been suffering from have lessened in the last few weeks - typical!
I still have all my other symptoms, sadly (unrefreshing sleep, numbness in toes, lack of concentration, forgetfulness, clumsiness, thinning hair, etc.).

I'd also like to know people's experiences with this medication as I am a little concerned about side effects.

Thanks in advance.

Plaquenil is a brand name for Hydroxychloroquine. I get a generic version from GP for Rheumatoid arthritis.
Of the auto immune medicines it's by far the least nasty. It keeps my joint pain reasonably under control though it can take many months to feel the full benefit.
The only, and worst, side effect is wind . This was awful when I first took it and improved after a few weeks. I also experimented about when to take the tablets and found two at night worked best.

Oh, that’s interesting. Has it had any effect on tiredness or was that not a symptom for you?

I don't know about your condition., however fatigue is a major symptom when RA flares up. The drug keeps the flare ups under control so yes it does help. It's not an instant effect though, you have to take it for a few weeks to feel the benefit. My Rheumatologist told me that you don't feel the full effects for up to a year. I've been taking it for three years.

When it was first prescribed I had to have a session with a rheumatology nurse before I took it.

Up to a year?!

It was the rheumatologist nurse who I saw - she wrote the prescription but didn’t really tell me much about it. I don’t really know much about my diagnosis to be honest.

Will start taking it and see if it helps. Next year.

He said the maximum benefits up to a year. I noticed an improvement in 3 weeks.

I’m surprised you were prescribed it without a confirmed diagnosis. I think you need occasional retinopathy tests as there is a potential side effect to the eyes- think I have that right. I have confirmed UCTD but not prescribed it yet.

I have been told about potential eye problems, and I have a grid eyetest thing to use. I’ve just had my eyes tested and told the optician about the medication.

I think it must be an official diagnosis, I was just expecting it to come from the rheumatologist, or for it to show on my medical notes.

Pyra- there isn't necessarily a blood test that can confirm RA. I have RA but it's never shown up in my blood work. I either have sero negative RA which means for some reason it just doesn't show up or it will show up as it progresses.

They tend to diagnose on symptoms as if you wait to see results in the blood you can miss the opportunity to prevent joint damage.

I'm on hydroxychloroquine, it hasn't been a problem particularly with side effects but I take other things as well so it's hard to be sure!

And yes unfortunately these drugs can take ages to work. My rheum said you really need to give them 3 months at least to be sure it isn't working and longer to get the full effect.

@pyra I was tested for all sorts through my GP and nothing came up. He referred me with possible fibromyalgia. Blood tests done by rheumatologist we’re all ‘normal’ (aside from low vitamin D, ferritin, and folate). She based her diagnosis on symptoms and an examination. She did a scan of my hands as those were stiff and painful first thing in the morning.

There’s something ‘automimmune’ happening somewhere, I’m sure. Trying to piece things together.

Thanks for the advice re meds, I will start on it tomorrow.