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[Douglas]

I was diagnosed with Sjogrens last year but I have had this illness for over ten years, looking at old photographs the glands next to my ears have been swollen for that long. For years I have been going to the doctor with all my complaints until I stopped going as they were useless. (I had mris, the lot). I had a bad stage with acute anxiety around the time. I can remember being told that my glands were swollen by a friend. I think the anxiety has brought all this on.

My dentist late 2015 referred me to a specialist and after almost a year of tests they confirmed Sjogrens. I actually told them I don't have dry eyes and dry mouth, when they mentioned do you have dry mouth way back at the start on one of my first appointments... I thought dry mouth would mean that mouth is dry all of the time. Well now I wake up at night and my mouth is like the sahara dessert. I can't sleep and i'm so tired. I have been on Hydroxychloroquine for 6 weeks now and the itchiness is killing me. Having a bath gives me intense prickly heat for hours. I sometimes feel like I'm in a trance and I'm not much for conversation. I have the Reynauds as well.

I feel like i am going to choke and I have to vomit when I am eating. I can feel the food lodged somewhere in my throat. My legs sometimes feel like they are so heavy and my breathing is terrible.

The pills have taken away my 'Libido' as well.

Will things improve? I was told the pills take 12 weeks to take effect.

I want this itching to go away first and foremost.

Has anyone had success in shrinking the swollen glands on face?

I'm in my 40's and feel like i'm in my 80's.

[susanep]

Welcome to this board, but so sorry for the need. It has taken many of us a long time to get a diagnosis, and I have the dry mouth, dry eyes, and have to use eye drops, and take pilocarpine for dry mouth. I have daily severe fatigue. I get choked very easily, and know I have had this and lupus for many years, but it didn't become fully active in me until years later.

Everyone's body is different, so some feel much better after the correct treatment. I am now 63 so it has progressed in me, and my life consists of the simple each day.

Others here will have much to share with you.

susanep

[SunshineDaydream]

Welcome to the forum, Douglas. Have you tried Evoxac or Salagen for dry mouth? They are both prescriptions that help produce saliva.

Also, here's a thread that has a lot of suggestions for over-the-counter remedies for Sjogren's related ailments. https://sjogrensworld.org/index.php?topic=10139.0

[Douglas]

The dry mouth only seems to affect me when I'm sleeping. I think I  have a dry throat and that's why I struggle to swallow food. I will check out the links.

I used to be quite quick witted and now when I search for a reply my mind is blank a lot of the time. Is this Sjogrens that causes this?


I will read through the forum with interest.

[Joe S.]

Welcome to the forum. For most , the average time to diagnosis is about 7 years. Mine was longer also. I have had periods of Dry mouth for decades before I went to see the doctor. I treat with alternative therapies as plaq and mtx caused bad side effects for me.

I have a water bottle that I can sip from near me at all times. Sip, swish,and swallow are the three S's that help with mouth dryness. I also have a sip with each bite of food.

For your glands you may try http://www.chakraforce.com/Tonations.html#228. I played each {tone} in sequence for 3 to 5 minutes twice per day or more often if I was in a flare.

Since we have trouble with sun light, I take vitamin D3 to replace what my body would normally make.

Sjogren's affects any gland that produces a fluid. During the initial phases you can have glands that over produce. Eventually you will just end up dry. Sjogrens also affects your autonomic nerves for some interesting challenges.

[Douglas]

I will definately have to get D3. No sunlight here either. So eventually my mouth will get dryer and dryer. I have no problems with my eyes so far apart from sometimes they go blurry.

[Carolina]

Dear Douglas, welcome.  Sorry you had find us, but glad you did.

1.  Brain fog is a standard side effect of Sjogren's.  Inflammation is probably the culprit.

2.  Try a humidifier in your bedroom for dry mouth at night.  If you wake up, try Joe's 3 S treatment:  Sip, Swish, and Swallow.  A little bit of liquid can hydrate your mouth that way
I take Salagen, which helps my mouth very much, and my eyes, to some extent.

3.  Drink fluids with your food, take small bites, go slowly.  You may have some autonomic damage that inhibits your esophagus from moving food down.  I have that (it's called Achalalsia) and food just stops and I don't notice it until the last bite doesn't go down and my esophagus is filled up to the top.  It is horrible.

4.  Sjogren's can affect your legs (nerve damage) and your lungs (lung damage).  I have both.

5.  I don't take Hydroxychloroquine (aka Plaquenil) but I know that it takes a while to be effective.  Can you try an antihistamine for the itching?  Check with your doctor.  There are other medications if Hydroxychloroquine has too many side effects for you.

6.  The attacks of Sjogren's on your body cause inflammation.  Inflammation causes Pain, Fatigue (profound) and Depression.   For Pain and Depression Cymbalta and other SSRIs can help a lot.  For Fatigue, the Hydroxychloroquine is supposed to help.  Prednisone can sometimes in brief controlled doses interrupt the Pain, Fatigue and Depression cycle.

This is a LOT to absorb.  Take your time.  You have a chronic condition.  It may go into remission (meaning you won't notice the symptoms, which will be less) but the disease doesn't go away.  Many people live with Sjogren's and have few problems.  From what you've said, I don't think you're in that category, Doug.

Keep us posted.  Pace yourself.  You will find that you are annoyed with yourself and that isn't going to help you.  You didn't ask for this, you're not at fault, and you're not being punished. 

It is what it is. 

Hugs,  Elaine

[SunshineDaydream]

The dry mouth only seems to affect me when I'm sleeping. I think I  have a dry throat and that's why I struggle to swallow food. I will check out the links.

I used to be quite quick witted and now when I search for a reply my mind is blank a lot of the time. Is this Sjogrens that causes this?


I will read through the forum with interest.

Evoxac or Salagen can help with dry mouth while you're sleeping if you take a dose before you go to bed. Saliva from those prescriptions also helps with swallowing food, as does consuming food along with a sauce or beverage.

For itching from plaquenil, if you are taking name brand see if you can switch to a generic, and vice versa.

[Douglas]

Thanks.

I will take everything on board.

I find the only thing that helps me is to drink alcohol a couple of times a week. I know that sounds crazy but for a few hours I feel alive and the brain fog dissapears. The next day isn't fun though. 

I was on Quinoric the first month and I itched bad then and chemist gave me the Hydroxychloroquine on the second month and itching is still there.

I've to see the specialist for the first time in April and they will assess my progress under the medication. I just saw a consultant the last time who prescribed me the Hydroxychloroquine. The consultant said the swelling could go down on my face. If it doesn't then it ain't working. A long wait ahead for me. I'm in the uk and I see the nhs.

Hopefully another medication will remove all these annoying side effects if it comes to that.