Newly Diagnosed

[AnneNeville]

Greetings,

After a long year chasing answers about mystery symptoms (especially double vision), I have been diagnosed with Sjogren's, causing a sixth nerve palsy.

I spent last weekend reading, this week talking to a panoply of doctors, and started a Prednisone burst with Plaquenil. I'm glad there is a non surgical option for my vision, and the diagnosis makes sense of many minor mysteries with my health over the years.

That said, I'm also frustrated! I'm 37 years old, but the dry eyes developed when I was 15. Almost two years ago, during a bad URI, I got sent to the hospital and tested for mumps. I have hallux limits in a toe, and have had minor dental problems. I wish someone had put it all together before now.

Worse, I have a history of depression and anxiety. I've been trying to get it under control for a while via therapy, but it's been hampered by mental and physical fatigue that I thought was imaginary or a lack of character. That part--the realization that some of this was maybe real and not imaginary--may be the hardest.

I'm still new to this diagnosis and don't know what to make of it. My doctors are indicating that it is manageable, and I have the impression that after some months of treatment I may not need medication daily, but I'm not clear what the ramifications really are.

I'm glad this community exists.

[Joe S.]

Well I am glad that you found our forum, I am sad to welcome you to this disease. You can read some of our signatures to see what we are taking. I was young enough (4 or 5 maybe) when this started so I thought the dryness was normal. Dryness does run on my dads side of the family.  It took many years to get a DX of Sjogren's. Seven years after a number of insults to my body, Fibromyalgia was DX'd. A moth on my face sent me to a Rhuemy thinking it was lupus. Seven years later I got a Sjogren's DX.

I hope your journey was not this long.

[AnneNeville]

Joe,

Thank you for the welcome. I did get dry eyes as a teen, so more than 20 years ago, but the other mysterious things only showed up in the last five or so and were not horrible. I've suspected I had less stamina than I should for most of my adult life (afternoon exhaustion), but the eyesight just became an issue last spring. That forced doctors to really dig.

I'm not sure if that is a long time or not for a diagnosis. I hope the medicine kicks this into remission. Then I may know how long I've been under the weather.

Anne

[Kathy57]

Anne,

Welcome to our group.  I'm glad that you at least have a diagnosis.  You can't fight a problem until you know what it is. 

Plaquinil is a good start.  They may want to keep you on it indefinitely if it works for you.  I've been on it for a couple of years and can honestly say that it has helped.  Not a cure, but a definite help.

It may take you awhile to learn what is best for you in regards to treatment.  Hang in there because things will get better. Not back to normal but significantly better.  Please help yourself to all the good information, helpful advice, and comradery here.

There is life after Sjogren's diagnoses. 😊  I'm glad you found us.

Kathy

[Scottietottie]

Hi Anne 

Welcome to Sjogren's world. We're a friendly site! Hope you find the site useful.

Take care - Scottie 

[AnneNeville]

Thank you for the welcome! I must say reading threads has made me more nervous than I was. I had hoped with treatment to feel significantly better. Maybe not 100%, but much improved.

That said, I suspect I have been less than my best for long enough that something more modest than 100% would feel much better...

[engy]

Anne,
Welcome, we are glad you found us.  I was sick a long time before getting all of my diagnoses. After getting diagnosed and started Plaquenil and supplements I felt so much better. 

My anxiety rears it's ugly head everytime I feel ill or even have a sniffle.  It's another battle a lot of us endure.

Good luck and keep us updated!

[AnneNeville]

Thanks!

I've now been on Prednisone and Plaquenil for five days. My energy is much improved, though the double vision is still there.

I find myself looking back at recent years, and how much I attributed my fatigue to a failure of willpower or possibly depression/anxiety (which I do have). I wonder now whether much more of what I've been struggling with was from Sjogren's.

In a way, finding out that there is something physically wrong (but treatable) is a relief.

Anne

[Carolina]

Hi Anne,

Autoimmune/Immune Disorders produce Inflammation.  Your Anxiety and Depression are probably in most part the result of Inflammation.

Inflammation causes:  Pain, Fatigue, and Depression.  I can't stress enough that most, if not all, of the conditions that we often blame 'ourselves' for, are the result of our Immune Disorders and a product of the inflammation that results.

The best evidence of this is that Prednisone is an  Steroidal ANTI-INFLAMMATORY Drug.   We often get some relief from NSAIDs,which are Non-Steroidal anti-inflammatory Drugs.  But when inflammation is making your life a misery, Prednisone, and also Plaquenil can work wonders.

Welcome, and know that you are NOT ALONE.  And that you are NOT AT FAULT.  There is wondrous hope and support here.

Hugs,  Elaine

[SjoDry]

Welcome Anne,

I am glad that the prednisone is helping. Don't worry when reading the different threads. Sjogren's effects each of us differently. You will tend to see the more involved or flaring folks here on the site. I know it is a relief to find out the fatigue is part of the illness. Most of us have fatigue which is variable. In fact, many of our symptoms come and go. (Can be maddening when trying to get a diagnosis..you get to the doc and the thing you called him/her for is gone & replaced with something else).

This is a great site for educating yourself and providing support.

Take Care.
SjoDry

[AnneNeville]

This is such a relief to hear. Thanks to the Prednisone, I feel much more energetic in the mornings, but by afternoon I'm exhausted again, and fall asleep for hours . . . I'm not sure how fast the medication should help, but I suppose any improvement is welcome. The exhaustion that's developed for me in the last single month has been very bad.

Interesting to hear that inflammation could be tied to my anxiety and depression. I've been fighting these since I was 19, though the depression was controlled reasonably well. The anxiety just got worse and worse.

Amazing to see other things that might be connected, such my tendency to get lingering UTIs that are painful for months, even after bacteria counts are no longer there. If that, too, is connected to Sjogren's, then my medical "problems" connected to the syndrome go back to age 12.

[AnneNeville]

Looking back on the things I blamed myself for . . . it's a pretty impressive list. I'd even convinced myself that I had caused my own severely chapped lips by becoming "chapstick addicted" as a teen. I spent almost a year with cracking, painful lips trying to "get off" the chapstick. Finally, I gave up because it just didn't get better.

[Carolina]

UTIs are common to those of us with Immune Disorders.  I have Interstitial Cystitis which is an inflammation of the lining of the bladder.

I had chronic UTIs and was tested and diagnosed with IC.

Eventually I found D-Mannose which is a simple sugar that is as effective as antibiotics in stopping/treating UTI's.

I take D-Mannose every day, and I haven't had a UTI in four years.

https://www.ncbi.nlm.nih.gov/pubmed/23633128

In our study, D-mannose powder had significantly reduced the risk of recurrent UTI which was no different than in Nitrofurantoin group.

https://www.ncbi.nlm.nih.gov/pubmed/27424995

CONCLUSIONS:
The results of this study suggest that D-mannose can be an effective aid in acute cystitis management and also a successful prophylactic agent in a selected population......

Best wishes, Anne

[AnneNeville]

I feel surprisingly uplifted.

I had an allergy shot today, and the PA who gave it said my worsening allergies could be related to the Sjogren's.

How long does it take prednisone to come into affect? I'm quite curious to discover how many things subside as treatment continues.

I'm already feeling much better, "lighter" in the mornings, though I still get very fatigued by mid-day. I am wondering if I can expect the better energy to last longer as the treatment goes on.

[Daisy]

Very interesting what you said Carolina about anxiety/depression can be inflammatory. We learnt in a biology lecture not long ago (I'm a nursing student) that there's new studies about inflammatory meds being used to treat anxiety & depression. (Disclaimer - The lecturer was telling us about studies he had read I am not saying people should try this & please dont) I found it really interesting.

To the original poster - sorry to hear of your diagnosis, I'm in limbo land not knowing what's wrong still but I've had fatigue for years, which the Drs put down to fibro but I'm wondering if I've had SS for years. Hope you feel better soon x