Author Topic: Lost hope  (Read 14369 times)

Sharon

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Lost hope
« on: December 31, 2015, 12:41:59 PM »
Got the results of the sialoCT of my salivary glands today: Degenerative process in parotid glands
with certain areas of the glands destroyed and others damaged.
So if I ever thought there was any hope of ever returning to normal functioning- it's now gone.
There's nothing to be done about it according to specialists and there doesn't seem to be anything
I can do to stop the degenerative process which is affecting my eyes as well.
I can't tolerate Salagen or Plaquenil so anything stronger is off the table.
Is this what I have to look forward to in life? Continued degeneration of my moisture glands and who knows what else???
I'm suffering so much as is and my quality of life has drastically deteriorated.
I can't bear the thought that this will continue and even worsen and can't understand how I can continue going through life like this.
I'm only 40 and I feel my life is over!  :'(
Can anyone here offer any hope?
Sjogren's (+ RA): positive ANA, RNP, RNP-A, APCA. Severe eye dryness + inflammation, multiple sensitivities and allergic reactions, fatigue. 
ORENCIA, Restasis, Anti-inflammatory diet, Vit. D & C, Ubiquinol 100mg, Omega 3....

P.Trish

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Re: Lost hope
« Reply #1 on: December 31, 2015, 02:23:14 PM »
Dearest Sharon,  I am so sorry for your suffering and I have no medical advice; however, do not give up seeking answers. New

treatments are being discovered, as I type. I thank you for the many times you have helped me and all the others on this site.

We need you Sharon.  I am praying that your symptoms will be greatly relieved in the coming days of 2016.

With love and hugs,  Tricia
female dx'd Jan 2012, English/Drama Teacher: retired, plaquenil 400mg, aspirin 80 mg, Lisinipril 20mg,  fish oil, multi vitamins, methyl pred  pack (every 2 months) evoxac, d-mannose, biotin, gluten free
. Stroke survivor  'Have a heart that never hardens and a touch that never hurts" (Dickens)

cccourt1942

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Re: Lost hope
« Reply #2 on: December 31, 2015, 02:47:46 PM »
Sharon,
     All is not lost.  We have a member who has A-fib (I think that is her heart problem)...who used pilocarpine powder in a bit of water to swish in her mouth and then spit out. 

I am not going to repeat what I told you the long journey to tolerating pilocarpine was for me.  I function now.  There are a variety of meds which do the same thing.  Trick is to start in a low enough dosage.

My salivary glands are gone as are my lacrimals.  I have not shed a tear in about 25 years.  The restasis has at leas given me a nice coating to my eyes once again.  No tears tho.

I do have my right parotid which must produce some saliva as I continue to have those sialadinitis pangs.  So something is trying to squeeze thru that duct.

Your life has already been filled with coping.  You will have more of that...but life as you KNEW it is over.  A new life begins.  We call it the new normal.

HNY, c3

Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

Way2dry

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Re: Lost hope
« Reply #3 on: December 31, 2015, 02:59:44 PM »
Sharon,  I'm so sorry this is happening to you.  I don't know what to tell you other than you are not alone.

I am in a situation similar to yours except that I've been afraid to get my salivary glands tested for fear of the results.  My mouth has almost completely dried up.  My ENT told me she got "a little" saliva out whatever that means.  Evoxac and Salagen have completely stopped working and no one can explain why. I'm afraid all my moisture glands have been too damaged to function since I am so severely dry everywhere. My biggest fear, too, is what next?  I've only had Sjogrens symptoms for 3 years and already I'm this bad.

I hope someone else here my have some positive feedback for you. 

Mary
Primary Sjogren's dx'd 2013 on symptoms. Blood tests neg. Breast cancer 2013. Dry everything. Tinnitus, GERD,Tamoxifen, vit d, Restasis & Evoxac stopped working, COQ10, fish oil

araminta

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Re: Lost hope
« Reply #4 on: January 01, 2016, 09:20:38 AM »
Don't ever lose hope - while there is life there is hope.

There are others here who cannot tolerate the usual medication, and they explore alternatives - it seems to take time to find what will help you but it does seem possible to find ways of relieving the various symptoms.

As I don't yet have a diagnosis for SS (tho lots of symptoms) I am not on any medication.   However I have found various things that help me - e.g. a saline nasal spray, chewing gum, frequent sips of water during the night, skin creams used night and morning, eye gel.   Also this forum is a mine of useful information and help.

I think trying to keep a positive and hopeful outlook helps.   Try to take light exercise, be kind to yourself, find things to do that you enjoy and that distract you from worries.   Don't take on more than you are comfortable with.   And as others have said, medical knowledge moves on all the time, and every year new remedies and medication come out.  :)

Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

deeindiana

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Re: Lost hope
« Reply #5 on: January 01, 2016, 12:12:20 PM »
Sharon, I'm so sorry. Some days feel hopeless, don't they. I hope by the time you read this that you have found a little hope, a little peace and a little comfort somewhere.

Do you feel confident with your current doctors? Would a second opinion bring a different perspective in treatment or medications? University hospitals often know of the newest treatments. If you have one nearby, they might be able to offer something.

I was just reading that there has been some promising early work in electrical (galvanic) treatment of salivary glands in Sjogren?s patients. One article even called it Salivary Gland Pacemaker. So at least know there is work being done that may, someday, offer relief.

Have you ever tried a low dose of the plaquenil? I've learned that I get deathly ill if I take over 200 mg per day (the average dose is 400mg). My doctor says a little is better than none, so that's now my daily dose.

Hang in there. You aren't alone.
Deb
Diagnosed June 2010.
Rheumy at University of Michigan Med Center. Age 62
Difficulty swallowing, fibromyalgia, burning mouth, GERD, anxiety, dry, dry, dry!
Medications: Atenolol, Dexilant, Plaquenil
I am my own worst enemy...

bluegardenia

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Re: Lost hope
« Reply #6 on: January 01, 2016, 03:11:27 PM »
sharon im bluegardenia. i cannot take salagen but i often use pilocarpine eye drops and it works. i put three in  two fingers of water and wash my mouth for one minute then i do it again  after five minutes; three more drops. i swear ot works for some five hours and u dont have to swallow. ask your doctor for a prescription of pilocarpine 2%. good luck
60,primary sjs, diverticulosis,ibs,atrioventricular blocks 2 degree first type, acid reflux.
omeoprazole, vit c, flack seed, omega 3, b complex, nac,systane ultra, pineapple seeds

Joe S.

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Re: Lost hope
« Reply #7 on: January 01, 2016, 05:17:39 PM »
What I will suggest may sound strange.
1.at night wear a scarf over your head tie it on the top of your head. I use a slip knot.
2. When they flair I take a airborne in morning and one at night
3. 8 oz of fresh carrot juice every morning
4. R-Lipoic acid and Acetyl-L-carnitine daily

this combination should help with in a month
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

bluegardenia

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Re: Lost hope
« Reply #8 on: January 01, 2016, 06:02:49 PM »
joe please what is airborne? cannot find  a possible translation for it thanks
60,primary sjs, diverticulosis,ibs,atrioventricular blocks 2 degree first type, acid reflux.
omeoprazole, vit c, flack seed, omega 3, b complex, nac,systane ultra, pineapple seeds

Joe S.

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Re: Lost hope
« Reply #9 on: January 01, 2016, 07:22:10 PM »
Sorry I forgot language issue. Airborne is a group of supplements for colds.
A, C, E, Magnesium, zinc, selenium, manganese
lonicera japonica, forsythia suspensa, schizonepeta tenuifolia, ginger, vitex spp., isatistinctotia, echinacea purpurea

it is an over the counter in the US. It is recommended to take on air flights.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

Sharon

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Re: Lost hope
« Reply #10 on: January 02, 2016, 08:23:18 AM »
Thank you all for your kind words.
What is freaking me out is the finding of salivary gland degeneration.
I wasn't aware the scan I did could even detect such a thing or that it was a possibility!
This pretty much seals the deal on the Sjogren's diagnosis.
I wasn't positive it was actually SJS before since my serology wasn't specifically positive for SJS
though rheumatologists had told me all my symptoms point to it.
In short, there had been some hope... :-[

Controlling the symptoms won't stop the degeneration so I now care less about those, though they do cause me much anguish.
The SialoCT findings don't even explain the swelling I get in my cheecks after eating or doing anything that increases saliva flow.
They didn't find any infection or blockages at all!  ???
I have drainage issues in one of my eyelids as well and it swells up beneath the eyebrow and eventually on the lid itself every day as the day progresses.
Nobody has succeeded in helping me with these issues and seriously, I've been to soooo many specialists already!
Even when I do take Salagen it only helps for an hour so it's not worth it for me.
I have tried the pilocarpine drops and they too don't give me relief for more than an hour.
So yes, as of yesterday I decided to give Plaquenil another chance. Can't tolerate more than 100mg and only at night.
Last time I had to stop this after 5 days since I found I could barely function from the dizzyness and fatigue.

I have an appointment to see a true Sjogren's specialist (rheumatologist) this week. He should know what my options are at this point.

Deeindiana- I will look into the Salivary Gland Pacemaker you mentioned
Joe- I don't live in the US. We don't have airborne here. What are your suggestions supposed to treat exactly?
Sjogren's (+ RA): positive ANA, RNP, RNP-A, APCA. Severe eye dryness + inflammation, multiple sensitivities and allergic reactions, fatigue. 
ORENCIA, Restasis, Anti-inflammatory diet, Vit. D & C, Ubiquinol 100mg, Omega 3....

Joe S.

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Re: Lost hope
« Reply #11 on: January 02, 2016, 09:12:41 AM »
Airborne boosts your immune system it is specifically designed for colds. 1 gram C, 2000 iu A, 30 iu E, 40 mg magnesium, 8 mg zinc.

ginger and echinacia

an alternative might be a tea with ginger, echinacea, lemon or lime, and honey to sweeten. You may wish this several times per day. A good book on teas may have better suggestions.

this follows my belief that auto immune diseases are caused by nano-bacteria. In treating for the bacteria and supporting our immune system. There are many ways to support your immune system, vitamins & minerals, teas, and juicing can do this.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

Sharon

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Re: Lost hope
« Reply #12 on: January 02, 2016, 09:20:10 AM »
What relief have you experienced through these treatments Joe?
Sjogren's (+ RA): positive ANA, RNP, RNP-A, APCA. Severe eye dryness + inflammation, multiple sensitivities and allergic reactions, fatigue. 
ORENCIA, Restasis, Anti-inflammatory diet, Vit. D & C, Ubiquinol 100mg, Omega 3....

Joe S.

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Re: Lost hope
« Reply #13 on: January 02, 2016, 10:26:38 AM »
I have gone over a month with out my glands hurting. If I forget (too tired) they hurt again. My ears hurt less than they used to hurt. I do not snore as much. My throat is not as dry. I still have to use a few sips of water when I change from left nose to right nose breathing and blow my nose. I do not have to put junk in my eyes.

Does it help? Yes, I believe it does when used with the other things I do to manage this.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

Kathy57

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Re: Lost hope
« Reply #14 on: January 02, 2016, 10:56:19 AM »
Pilicarpine only worked an hour for me, as well, and I was miserable!  I switched to generic Evoxac and it has made a world of difference for me.  I think it also has an accumulative effect.

From what I understand, Plaquenil can slow down and sometimes stall the disease process.  It took me a long time to be able to tolerate the Plaquenil, but it was worth it.  If you can tolerate it, it may preserve your function.  Also, I don't even notice the side effects anymore.  I can now take it without issue.

Try not to give up hope.  There will be better days to come.  Keep talking to us and we will help you through this.
Kathy

62 yr old female - Diagnosed Sjogrens Aug. 1st 2014.  Plaqinil, Evoxac, Prevacid, Lexapro, Hypothyroid, Esophagel Reflux, Gastritis, Barretts Esophagus, failed sinus surgery with 3 nasal septal perforations.  (Can't see it from the outside)  Asthma, albuterol, Dulera, Nebulizer, Osteoporosis.