Newbie, here as a proxy

[cara]

Hello, all, and thanks for hosting and participating in this forum.

I'm new here.  Overwhelmed a bit.  My husband is the one with Sjogren's, but he leaves the information-gathering up to me.  Thankfully, I'm retiring soon, so I'll have a new full-time job as his health researcher.

He was diagnosed with SS a years ago, when his only symptoms were dry eyes and mouth.  This has progressed, however, and he's going through further diagnosis now due to fairly extreme and constant pain.  He's got indications of some level of RA, as well (which at least his mother had).

He's also got low-level dry macular degeneration.  His rheum wanted to put him on hydroxychloroquin/Plaquenil, but his ophthalmologist says NO.  So we're searching for other options that don't affect his other conditions.  He's currently on low-dose prednisone but it doesn't seem to help him much and *I* have concerns about its long-term use.

So I'm interested to read other posts from people who want to try hydroxychloroquin but are perhaps concerned about vision loss.  My husband seems to fear being blind far more than being in pain (though he is constantly complaining of his pain).

Again - thanks.  I have what seems an overwhelming amount to learn.

[Carolina]

Welcome cara, 

So sorry you and your husband have to deal with this....but you're in the right place!

I was diagnosed with Immune Disorders, including Sjogren's Syndrome inla 2002.  By 2007 I began having several complications, which I won't bore you with here.

The hallmarks of any Immune Disorder are pain (in joints, muscles, etc), profound fatigue, and depression.  All of them are caused by the inflammation caused by the activity of the Immune System as it attacks the organs and system of your body.

I'm sorry your husband also has Macular Degeneration.   I was diagnosed with Dry MD in my left eye and Wet MD in my right eye in January.   I will have my sixth injection in my right cornea on Monday.  Nothing to do to treat Dry MD.

https://pubmed.ncbi.nlm.nih.gov/19846275/

"Autoantibody production is associated with a variety of ocular disorders, including autoimmune retinopathy (AIR) and age-related macular degeneration (AMD)."

Autoimmune/Immune Disorders can affect all parts of your body.

It sounds like you have good doctors, and that you are doing a good job managing all this information.

There aren't any 'quick' fixes for any of this.

I'm also dealing with low dose steroid (methylprednisolone).  If I go below 4 mg/day I have a return of my 'myalgia' (total body pain), so I keep trying to taper, but I'm still stuck at 4 mg.

Please ask your questions and keep us posted.

Elaine (aka Carolina)

[meirish]

I'm so sorry that your husband has to deal with this disease. The pain sounds like it most likely is related to RA, especially if there is a family history. It is common for people with RA to have Sjogrens disease. No one likes to take prednisone long term and especially if it is not showing any help. The Hydroxychloroquin is a good drug and I have been on it for many years. It does help with pain and fatigue, but if the eye doc says no then probably good idea to wait and maybe a second opinion later is in order.

The good thing is you don't have to jump into any thing immediately as there is testing to be done and  probably more specialists to see. The pain is the thing that is probably bothering the most and the thing that would be good to get under control. Immunologists or Rheumatologists could be of great help at this time as there are other newer drugs out there that can be given IV and a good doctor could guide this along for you.

It is so confusing when all these health issues hit a person at once as it takes time and patience to find the right doctors and treatment to help make life easier and more comfortable. Do not panic as these things can be addressed. I would not hesitate to get another opinion on the eye issues from an ophthalmologist who deals with autoimmune patients. Universities often have many of these specialists that work together for optimum patient care. Good luck and keep us updated if you have time. Thank you. meirish

[araminta]

Hi Cara, I'm sorry you and your husband are having to deal with this.

I was diagnosed with dry AMD last August.   I am very thankful I never took Plaquenil as it can very occasionally cause the same type of macular damage as AMD.  Having said that, plenty of people here are taking it without that side effect, and everything we do is a balance of risk.

I take lutein and xeazanthin tablets in the hope they might help the eye problem, although as far as I know it is more at the later stages of AMD that their benefit can be noticeable.

I don't take any prescribed medication for the Sjogrens - which in any case hasn't been officially diagnosed, as my blood tests have been negative, and I haven't yet wanted to have the lip biopsy.   As meirish says, the pain your husband feels is more likely to be related to RA.

Do feel free to pm me if you wish.

[susanep]

I am sorry for what your husband is going through. I take plaquenil , and don't have any issues. I use systane for my eyes and by prescription Restasis.  I still have dry eyes. I also have lupus, fibromyalgia, and RA. Severe fatigue along with pain that moves around. All of this started many years ago for.me. I had to quit working in 2010. (if my memory is correct on that)
I hope your husband gets the help he needs.
susanep

[Gorn]

Hi Newbie!

A few other things to consider:

Sjogren's is a serious disorder; it is far less common in men (as with most autoimmune conditions) but there is some evidence that Sjogren's symptoms may be worse, on average, in men.

Your husband will likely need treatment for depression at some point in the course of the disease, if he is not already receiving it. Men stereotypically aren't all that good at asking for help until things get pretty bad.

My grandfather had macular degeneration - things progressed pretty slowly but he did eventually become legally blind. He dealt with the loss of vision amazingly well, in part because he took the time to develop the skills he would need to manage his eventual loss of sight.

Pain management is important for Sjogren's, and you are right, prednisone is not a long term strategy - and in my case it had diminishing returns. 

A good rheumatologist is worth his/her weight in gold, platinum and a few other rare elements. Don't feel like you are stuck with the first one you see. 

Lastly, I didn't tolerate plaquenil at all - but it is possible to get to a better place without it. Hang in there.

Hope this is somewhat helpful.