Question for those dealing with this - not confirmed yet but definitely have symptoms such as dry eyes, mouth, etc. and consistent swollen glands. I am on Hulio (Humira biosimilar) for PsA and was wondering what additional treatments anyone takes/does for Sjorgen’s ? TIA
The only thing that I do is more or less symptom management. I take evoxac (cevemiline) for my dry mouth and throat. This helps a lot. I basically can’t sleep without this, because I get panicky when I can’t swallow. I also use restasis eye drops, as well as a lubricating drop. I have found that some of the DMARDs help out, but the symptom management is the big thing.
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I was never formally diagnosed with secondary Sjogren’s, but used to get fierce dry eyes. One trick is to know that all eye drops are definitely NOT equal, and to ask an optometrist or pharmacist that has lots of knowledge which one to use for actual dry eye - it makes a really big difference to get the right one vs the standard ones.
Yes! On my most recent visit I had a discussion with my eye doctor about what his most current recommendations were. It will always be a preservative free drop, because the preservatives can cause their irritation.
I have been dx with secondary Sjogren’s. My rheumatologist has added Hydroxychloroquine, 200 mg bid to my regimen. It has really helped with my pain and stiffness. I also take Enbrel and a daily dose of 5mg prednisone for PsA.
To help with dry eye, my ophthalmologist put in tear duct plugs and they have helped immensely. I have tried some of the expensive prescription eye drops and didn’t like them, plus I am now on medicare and the cost puts them out of reach.
It sounds like you’re getting similar care. I was actually just switched back to hydroxychloroquine about 6 months ago. Not sure that it’s specifically making a difference but it’s better than the methotrexate.
As a reminder, taking this med means that you should be getting a baseline visual field test done, and getting monitored. Retinal toxicity (if it happens) takes years and years to develop, but because it’s not reversible it does need to be caught early. I think I have a total of 8 years on plaquenil now. I’m not overly concerned, but I am monitored. My eye doctor said he’s only really seen it in ten years of use plus, and obviously not in everyone who’s used it that long.
Yes, Stoney, it’s so important to get those eye tests done! I go regularly because I have a family hx of ocular melanoma. My dad had melanoma on his retina so I get checked out thoroughly, every year.
Yes, so you are definitely there.
I initially started seeing the eye doctor at a fairly young age because my brother was diagnosed with glaucoma when I was around 30 so I did start getting yearly checks then