I’m new to the forum but have used it for info over the last few years and it’s been a great resource.
I’m a 34y/o male from the UK. My symptoms started as dry eyes out of the blue more than 5 years ago. Mouth and nose followed suit and I began to have what I now realise are flares with nasty fatigue.
I have a good GP who was happy to treat the symptoms and I’ve been on preservative free eye drops and pilocarpine from the start.
I’m seronegative for Sjögren’s but the hallmark symptoms and remitting/relapsing nature are pretty conclusive. Up until a couple of years ago I was happy to treat my symptoms, manage my flares and wasn’t overly concerned about having a definitive diagnosis. My flares have worsened over time despite completely changing my diet and avoiding inflammatory foods.
Over the last 24 months I’ve had bad dizziness off and on(I take betahistine dihydrochloride which helps), shortness of breath and chest tightness(this only stuck around for 3 months after flare) and my most recent flare has caused limb weakness - particularly in my hands and wrists and tingling in my lower legs and feet.
I had a pretty recent MRI when they investigated my dizziness and no lesions were found. Assuming I’m having neuropathy of some kind and crossing my fingers it passes once my flare subsides.
I don’t have a rheumatologist at the moment but I’m thinking it might be time to bite the bullet and get on Plaquenil. Wondered what people thought about this? Is there any sense in holding off as I know some people suffer side affects.
I don’t make a habit of introducing myself by listing symptoms and my medical history BTW!
Hope everyone is well or at least in a good space mentally if they aren’t,
It would certainly be worth asking your GP. He may not be willing to prescribe it, though, because (despite the “harmless” hype) it does carry some significant risks. My rheumatologist wouldn’t allow me to fill the prescription until I’d seen an ophthalmologist.
But there’s no harm in asking.
You know, your history is on your profile, which only other members can see. No need to re-tell it each time.
Let us know what the GP says!
I don’t know if I would ask about a specific medication. But I certainly would go to the rheumatologist, and ask about needing to take the next step. Explain that you have been taking these medications to help with your symptoms but that you clearly need something systemic at this point.
I will second our mod support. Plaquenil as a medication that can cause retinal toxicity over time. It doesn’t happen to a lot of people but it can. It’s important to have specific testing done prior to starting the medication so that they have a baseline. It will also require visits the eye doctor every 6 months. The Plaquenil toxicity cannot be reversed, but further damage can be halted by stopping the medication. Personally I took it for 7 years maybe. I did have eye problems but they were not related to Plaquenil. Ultimately I needed a different medication to control my multiple autoimmune conditions.
Hi Malesjo! I completely agree with Stoney here in that it would be good to check in with a rheumatologist. While I can’t say anything about whether or not the rheumy will give you plaquenil, a specialists’ point of view is invaluable when it comes to looking at different medication options and monitoring your symptoms. Most importantly, a rheumatologist will be able to see your detailed medical file and discuss a treatment plan specifically designed for you.
While it doesn’t look like anyone’s made any recommendations for a rheumy in the UK yet, you could try sending out a request at our doctor recommendations/reviews category linked here:
Otherwise I’m sure your good GP knows a specialist or two! Glad that you’ve been able to come to this site for info and happy to meet you!
Thanks for the speedy replies.
I was under the impression that plaquenil was the lesser of the evils when it comes to treating sjögren’s but I’ll definitely make sure to align the opthalmology checks if I’m starting it.
At this point I’d be happy to try just about anything to slow progression and reduce my symptoms.
I’ve found a rheumatologist whose bio describes her as a sjögren’s specialist. Thought I’d start there!