Sjögren’s syndrome

Design12

Hi everyone, I am new to this chat, I was diagnosed with Sjogren’s Syndrome 12/2021 and started taking Hydroxychloroquine 2 tablets 200mg per tablet.

I have been retired for 8 years and I have noticed over that time my symptoms have gone decidedly worse, I suffer with chronic joint pain effect my knees, right side of my chest including my neck, my mobility has suffered and I have great trouble bending or kneeling often unable to raise myself up from this position without using a aid I.e. a chair.

the Hydroxychloroquine medication does not appear to have made any difference rather it has given me a nausea feeling most days.

I take over the counter ibuprofen 2 x 200mg say 4 times a day, but i am worried about the quality I am taken over time might give me another issue.

I have joined this chat to hopefully get a answer as to what else I can try

regards to all

Ken

noddingtonpete

Hello @Design12 and welcome to the community. We are a friendly and supportive group and I hope that will be your experience as well.

I understand that you have been diagnosed with Sjögren’s syndrome and been prescribed hydroxychloroquine and wondering about side effects and whether these can be attributed to the drugs. It is always best to check with your consultant/GP about this but I have included below links to some information on our website that you might find of interest.

https://www.versusarthritis.org/about-arthritis/conditions/sjoegrens-syndrome/

and

https://www.versusarthritis.org/about-arthritis/treatments/drugs/hydroxychloroquine/

Please keep posting and let us know how you are getting on and I am sure others will connect with you to share their support and experiences as well.

With very best wishes

Peter (moderator)

Bertie_brace2022

@Design12

Hello Ken,

I thought I would jump on your chat, I was diagnosed last year with connective tissue disease, fibromyalgia and now myositis, I am also now under investigation for Sjogren’s Syndrome.

I take Hydroxychloroquine and have been on them since last February, they have done absolutely nothing for me. I also take meloxicam which is pants.

I have been on an opioid pain killer since last year (oxycodone) which is very strong and seemed to be the only drug that took the edge of the pain, I am not tapering down as long term use can cause issues. I tried ever pain killer in the book and this was the last resort for me. It may be worth you asking your gp if you could try a small dose?! One thing I will say is that it’s highly addictive and can make you hypersensitive to more pain.

can I please ask (if I may) how did they diagnose you with Sjogren’s Syndrome? I have identical symptoms to you, as well as a dry mouth and dry eyes. I am curious to know as it’s taken me 12 years to get a diagnosis of UCTD and Myosotis.

Jay

xx