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Sjogrens Topics => Living With Sjogren's => Topic started by: Sharon on December 31, 2015, 12:41:59 PM

Title: Lost hope
Post by: Sharon 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?
Title: Re: Lost hope
Post by: P.Trish 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
Title: Re: Lost hope
Post by: cccourt1942 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

Title: Re: Lost hope
Post by: Way2dry 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
Title: Re: Lost hope
Post by: araminta 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.  :)

Title: Re: Lost hope
Post by: deeindiana 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
Title: Re: Lost hope
Post by: bluegardenia 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
Title: Re: Lost hope
Post by: Joe S. 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
Title: Re: Lost hope
Post by: bluegardenia on January 01, 2016, 06:02:49 PM
joe please what is airborne? cannot find  a possible translation for it thanks
Title: Re: Lost hope
Post by: Joe S. 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.
Title: Re: Lost hope
Post by: Sharon 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?
Title: Re: Lost hope
Post by: Joe S. 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.
Title: Re: Lost hope
Post by: Sharon on January 02, 2016, 09:20:10 AM
What relief have you experienced through these treatments Joe?
Title: Re: Lost hope
Post by: Joe S. 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.
Title: Re: Lost hope
Post by: Kathy57 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

Title: Re: Lost hope
Post by: Sharon on January 02, 2016, 11:05:10 AM
Thanks so much Kathy,
This forum has indeed proved invaluable so far.
What dosage of Plaquenil do you take?
Aren't you concerned about the possible eye damage it can cause?
Evoxac is not available where I live,
but if it helped you that much I might try to go to lengths to attempt to import it.
Title: Re: Lost hope
Post by: bluegardenia on January 02, 2016, 11:31:36 AM
sharon where are u from? europe?
Title: Re: Lost hope
Post by: Kathy57 on January 02, 2016, 11:52:29 AM
Sharon,

I take 200 mg of Plaquenil twice per day for a total of 400mg.  I had to "build up to it" gradually and I take it with food.  I was so sick and miserable when I started and the people here walked me and talked me through it, day by day, and week by week. 

I felt the Plaquinil kick in at about three months (a terribly long time when you are miserable and without hope!). I felt better at 6 months and even better after a year.  No where near "cured" but so much better.  It gave me my life back by helping the fatigue and pain.  I have my eyes examined by an Opthamalogist annually (who is very familiar with Plaquinil and Sjogrens.).  I am willing to risk the eye damage for the help it gives. 

My eye doc keeps on top of everything and told me it would be unlikely that I would have eye damage but to call him immediately if I notice any vision changes.  I've decided that I will take it as long as it helps me.  I can always stop it if I have problems.  Life is a bit of a gamble and faith.

I would go for the generic Evoxac  because it is cheaper than brand name and I personally found no difference between the two.  I can't live without my Evoxac. I would definitely try to get some to at least try it out.  It was also at the advice of people here.  It lasts longer than the Pilicarpine and you can take it three times per day, depending on how much you need it.  (I take it three times per day)

Hang in there!

Kathy

Title: Re: Lost hope
Post by: LucyD on January 02, 2016, 12:46:47 PM
Sharon, please do not ever give up hope. They are making advances and researching. Also, our bodies and their innate Intelligence are amazing. I am sorry I have no suggestions, but I send hugs and love.
Title: Re: Lost hope
Post by: Sharon on January 02, 2016, 12:57:51 PM
Kathy- Thank you, I will try the Plaquenil again and build up gradually to try to save what is remaining of my salivary glands.
I'll also try to get hold of the Evoxac one way or another.
Sounds like these options are my best bet at present.

LucyD- Thanks for the kind words of encouragement and hugs. Means alot...
Title: Re: Lost hope
Post by: Deb 27 on January 02, 2016, 03:08:00 PM
Sharon, I am so sorry that you are having such a tough time. I had a hard time tolerating the plaquenil too. It messed up my stomach. Try switching brands, or start out with a low dose or if you can afford it, try the name brand plaquenil. I take the generic by Sandoz with a full meal and do ok with it now.  Good luck to you, this is a tough disease at times.
Title: Re: Lost hope
Post by: SunshineDaydream on January 02, 2016, 04:08:52 PM
Sorry to hear you were feeling to slow after getting test results. I hope you are feeling better now that others have suggested more options for you to try.

Plaquenil provided relief for me within weeks.

Eye damage from plaquenil is rare, and even less likely to occur since the dosing guidelines were revised in 2011. If you haven't been to an opthalmologist yet to have eye tests particular to plaquenil done to establish a baseline yet, go and do that when you feel you can tolerate taking plaquenil. It's important to establish the baseline before or early in the treatment so the doctor can compare test results during your subsequent annual exams and observe any changes.

If you are really concerned about eye damage from plaquenil. getting your eyes examined every six months rather than annually could make you feel better about the possibility of earlier detection of any changes.

For the purpose of full disclosure, I was diagnosed with plaquenil toxicity (retina damage) in 2009 after being on it for 4.5 years. Upon diagnoses, I had to stop taking the medication immediately. I found out during an opth appointment scheduled between annual plaquenil monitoring appointments because I needed a new eyeglass prescription after losing my sunglasses. I didn't notice any plaquenil related vision changes before or after the diagnosis. The opth noticed that I didn't do well on the plaquenil monitoring tests and referred me to a retina specialist. The condition is so rare that none of the three opths I've seen subsequently as a result of moving (including a John's Hopkins trained opth with 30+ years of experience) have ever seen a case of it other than in a textbook. The 2011 revised dosing guidelines would have me on a lower dose of plaquenil if I were still eligible to take it, which I'm not though I wish I were. Bottom line is opth appointments to establish baseline and monitor thereafter are key with plaquenil.
Title: Re: Lost hope
Post by: Sharon on January 02, 2016, 04:35:03 PM
Deb- thanks, I'm taking the name brand Plaquenil since that's what's available here. It messes with my sleep and makes me dizzy and fatigued but I'm currently working towards tolerating it.

Sunshine- I'm still in partial shock from the test results and in some denial as to their reliability.
But it has definitely been a wake-up call. I need to begin medication.
So yes, what concerns me most about the Plaquenil is the eye damage.
I don't care that it's "rare"- I have a knack for winning the "bad luck lottery". :(
What exactly do they need to check for the baseline?
Thanks for mentioning this, since the rheumy who prescribed it didn't say anything about establishing a baseline!
What dosage were you on when your toxicity began?
Title: Re: Lost hope
Post by: Joe S. on January 03, 2016, 06:24:55 AM
Because of our conversations I did some experiments last night. 3 hours into the night without the added warmth around my saliva glands and they were very painful. I kept just them warm and two hours lated my ear glands/tubes hurt. Adding the extra warmth there and a few more hours and both are a little sore.

my conclusion is that the added warmth of a mumps scarf is the main  thing you can do to reduce the gland pain in your head. Scrooge had Sjogren's. He wore a mumps scarf to bed. He wore slippers and had crafters gloves indicating raynaulds. "A Christmas Carol" by Dickens, is about someone with our illnesses!

try not to wait for the visitation of three spirits to choose to be happy. ;)
Title: Re: Lost hope
Post by: cccourt1942 on January 03, 2016, 06:44:50 AM
Joe:  apparently you have never spent the night in a drafty English (or Scot) LOVELY old home....with original fireplace for heat...for the entire place.  :)  You must wear your socks AND gloves...plus stocking cap ....for warmth.  The comforters and WARM, woolen mattress pads are yummy!!  (and later ---flannel sheets)   Typical fare in city in countryside!!  Germany and Austria follow suit.  I dreaded those trips due to my sensitivity to cold....but populations who live with those conditions make do with wonderfully warm practices!!  Never visited the Scandanavian countries...but believe they are likely the BEST!! 
ccc
Title: Re: Lost hope
Post by: Joe S. on January 03, 2016, 07:41:41 AM
Yes, most of my life has been in a home with central heating. My dads mothers house was two log cabins put together. A kerosene heater in the living room and wood stove in the kitchen. The bed rooms had floor vents. My cousins farm home with a fire place no floor vents and an outhouse are among my christmas memories. Another cousin had a victorian farm house. The the only heat was from the cook stove in the porch. It had an outhouse 20 yards south west and an out side pump 20 yards to the north east. Hurricane lamps were common for lighting. Yes we had to dress warm if we could. Since we were not wealthy we had to be active to stay warm. Most of yhe time, our windows were cracked open all year, day and night for fresh air.

No, I do not know of the drafty old buildings of Europe. I do know of the warmth of a teepee, a Mandan earth lodge, an igloo, and a snow bank. These are fond memories of being warm. The igloo was heated with a candle and we controlled the draft. It often reached temperatues in the 80s in side the igloo. You heat it up to form ice to better reflect heat. I would love to see the isles and Europe some day on a senior handicap tour. Our oldest daughter spent asemester in England and we sent out youngest on a honeymoon art tour of Europe.

Title: Re: Lost hope
Post by: quietdynamics on January 03, 2016, 08:55:02 AM
I was not doing well with plaquinel and pilocarpine among other meds.
Made appt to go to Sjogrens Center.
Among labs, Dr. also order Nuclear Medicine Salivary Test --> result: damage, dysfunction Parotid.
*Fortunately parotid provides 25% of saliva with other glands providing the rest. Adding some lemon juice to sipping water can help.

Dr. had me do a trial of extended prednisone with labs. Then consult.
At follow up lowered plaquinel and added Methotrexate (labs every week to start), pilocarpine 5 x /day. and tests showed low in Vit D and B.. so that was addressed.

There is some tweaking.
There is hope.

Title: Re: Lost hope
Post by: Joe S. on January 03, 2016, 09:41:45 AM
I am glad youhave found some hope.
Title: Re: Lost hope
Post by: quietdynamics on January 03, 2016, 10:14:36 AM

Joe that change was a long time in the making and not perfect.
Just a bit of progress.
Currently I am in a 'zone' of needing to give my body a rest from some meds due to 'wonky' labs.

I watch talks on TEDTalks to learn new things.
Watch inspiration videos by people who overcome life events, birth challenges, etc.. and push on.

Right now I am back to physical productivity of 20mins, then rest.
Over the summer it was 6-8hrs.. wow.
So there is hope .. I can get back there when meds resume.
Title: Re: Lost hope
Post by: DarleneB on January 03, 2016, 11:19:06 AM
Sharon...I would try and import the evoxac...what a life saver it was to me...went from no spit to drooling a little at night....
Title: Re: Lost hope
Post by: araminta on January 04, 2016, 03:29:35 AM
Sharon, I'm so glad you have had suggestions here which you are going to take up.   Everyone has to find a slightly different approach, and it can take some time to find the best one, but hang on in there and keep posting.

Following a couple of posts above,  I wouldn't like anyone to be deterrred from visiting the UK in winter!!!   The vast majority of homes here have had central heating or other effective heating for decades. ;D   

Scrooge was living in the 1840's, and he was too miserly to heat his home properly!!
Title: Re: Lost hope
Post by: eelcifer on January 04, 2016, 07:00:43 AM
Sharon, don't lose hope yet, I am new to this disease and how it is changing my life and I completely understand about wanting to lose hope since I have been bouncing around from doctor to doctor and being told that nothing is wrong and it is in my head.  I am finally getting to the bottom of this and getting a diagnosis for this and going to join the fight with the rest of you to find my new normal.  Please keep hope because people such as yourself give hope to people like me.  Have a good New Year.
Title: Re: Lost hope
Post by: bluegardenia on January 04, 2016, 07:29:56 AM
may be its not important for many but sometimes when i read comments i wonder where my sjo friends live.  may be it can help  to have suggestions if who wants to, says in which country we  are staying, for the  local names of the medicines and to find help and may be to suggest where  help can be found near by.
 im in europe, in italy, in milan a big city that is in the north near switzerland. i lived for sometimes in paris, france and have been in touch with doctors also in england
 hope it can be helpful for some european sj


Title: Re: Lost hope
Post by: araminta on January 04, 2016, 08:55:21 AM
I agree with you, blue gardenia, it would be useful to have some way of sorting posts by country/
Title: Re: Lost hope
Post by: bluegardenia on January 04, 2016, 09:30:52 AM
i think so bec sometimes the suggestion is by name of medicine or go to the nearest hospital or may be u can find but verything is different from town to town or much more when we speak of different country or continent. access to doctors and sj centers can be easy for someone but not for others.
Title: Re: Lost hope
Post by: cccourt1942 on January 04, 2016, 09:50:46 AM
Blue, Ara, etc:  Above this section of the forum is a link called Useful Links.  There is also Living Life In spite of Sjs.  This isn't for me...so you guys can do what you want.   If I wanted people in my country (or continent) I would ask the moderators to "pin" a topic of :  Foreign Country Information ...or some such.  There is a large faction from the UK, several from Scandanavia,  and I recall at least one member from Brazil.  Blue is in Italy and I thought there was another in Italy.

With enough of you in a country (say the UK) they could "pin" one just for the UK.  Then France, Germany, etc. could obtain info from there...or as Blue has stated, she still has contacts in the UK.

The most perplexing problem I recognize with persons outside the US and Canada, is medicine available.  There are meds not available in Canada (from the US) and vice versa.  It is a worldwide dilemma.  THEN...who wants to buy three months worth from out of country only to determine it does not work for you. 

This is where info from members who use alternative therapies could share each and every method used.  The names of some supplements, etc. are not the same across languages/countries I have noticed.  This "service" could expand this site as well.  since it is Sjogren's WORLD Forum...this only makes sense.  I know one of our moderators is in the UK.  Can't recall which one.

Good luck to this group.  Our symptoms may vary from person to person, but the base disease is the same.  We come here to learn and share.  Ask for help, suggestions. 

There are many who still travel internationally.  Meds or "aids" can be transported and left in cities at hotel desks for pick up.  (Leave it open till you drop off so can be determined not to be dangerous!  :))  Back in the day, we would leave miscellaneous items world wide in areas where we traveled...if something needed to be transported to a friend, relative, or colleague.  It was quite an operation.  Everyone knew where everyone traveled because of this need.  This was a long time ago....but still works. 

See if it is a workable situation for moderators, the site, and YOU who could use this type of help.

c3
Title: Re: Lost hope
Post by: SunshineDaydream on January 04, 2016, 12:31:09 PM
Sunshine- I'm still in partial shock from the test results and in some denial as to their reliability.
But it has definitely been a wake-up call. I need to begin medication.
So yes, what concerns me most about the Plaquenil is the eye damage.
I don't care that it's "rare"- I have a knack for winning the "bad luck lottery". :(
What exactly do they need to check for the baseline?
Thanks for mentioning this, since the rheumy who prescribed it didn't say anything about establishing a baseline!
What dosage were you on when your toxicity began?

Based on my current circumstances, I completely understand about surprise from test results, being dubious and the need to find a reasonably acceptable med (they all have negative aspects).

Seems like a big oversite for your rheumie not to mention getting tested before or soon after taking plaquenil. Some say to get tested before starting the med, while others say to wait until you know you can tolerate the med so as to not waste money on eye exam if you aren't going to be able to continue taking the med. In addition, some rheumies take eye monitoring so seriously that they won't issue refill of script until provided with annual go-ahead from opthalmologist.

At 5'4" and 100-105 pounds at the relevant time, I was prescribed 200 mgs 2x per day = 400 mgs per day which was within then-current dosing guidelines. Under the new (2011) dosing guideline, I would be on a maximum of 200 or 300 mg per day.

Here's an article with the dosing guidelines and eye exam info: http://www.lupus.org/magazine/entry/vision-quest
Here's another article with more detailed eye exam info: http://webeye.ophth.uiowa.edu/eyeforum/cases/139-plaquenil-toxicity.htm
Title: Re: Lost hope
Post by: araminta on January 04, 2016, 12:55:15 PM
Many thanks for your suggestion ccc.   I think something along those lines would be very helpful.   I have contacted one of the admin team about it.  :)
Title: Re: Lost hope
Post by: bluegardenia on January 04, 2016, 01:21:46 PM
thanks ccc, ill check what u suggested but ill put italy on my profile... i myself often have trouble with going around bec of the language so if some people look for help they can find me at once. hope its ok
Title: Re: Lost hope
Post by: susanep on January 04, 2016, 03:04:27 PM
I am so sorry to hear your going through all of this. I do believe as long as you are alive there is hope. It may be one particular doctor or other sjoggie that brings some light to you. I do so understand your feelings though. I at times feel this way, and my dear husband will lift me up.

susanep
Title: Re: Lost hope
Post by: Sharon on January 04, 2016, 03:33:54 PM
Thank you all so much for your support and words of wisdom.
It has been truly heart warming to read your messages. :-*

Sunshine- You've really opened my eyes with your Plaquenil information! According to the guidelines you sent me I shouldn't be taking more than 300mg, and that idiot rheumatologist told me to take 400mg!
Never going back to that one...

quietdynamics- sounds like you had the same salivary gland test done as me with similar results!
Do you trust those results? I had it done twice and received some contradictory results...
The glands have to actually fill up with the injected iodine for them to see all the parts, and for some reason mine didn't fill up well so they missed some parts that actually do exist... ???
Still, they're convined at least one of my glands is damaged and diagnosed "DUCTOPENIA".
How did you tolerate the Prednisone and Methoraxate?

Darlene- I would love to drool...I'll make a real effort for the Evoxac, but it won't be easy to get it.

C3 and blue- Good ideas there...I could use some international smuggling skills right about now... ;)
Title: Re: Lost hope
Post by: quietdynamics on January 05, 2016, 01:13:25 PM

The test I had done did not use iodine.
It required a radioactive tracer, thus the need to locate a nuclear medicine facility.
Here is information on the test: http://www.hopkinssjogrens.org/disease-information/diagnosis-sjogrens-syndrome/salivary-gland-function-scan/

http://www.hopkinssjogrens.org/disease-information/diagnosis-sjogrens-syndrome/
Title: Re: Lost hope
Post by: Sharon on January 05, 2016, 01:42:50 PM
That is one interesting exam....I've never been offered that but it sounds far more reliable than what I went through.
Title: Re: Lost hope
Post by: irish on January 05, 2016, 04:13:43 PM
I am just curious how many people are having all these fancy tests to check their salivary gland function. I had a test back n 2005 and it consisted of placing suction cups on the parotid salivary duct opening with a glass syringe attached to catch the saliva drops.

The doc then placed lemon juice in the middle of my tongue.This causes that puckering effect that dill pickles cause and is to stimulate the saliva in the salivary gland. The test showed that I had a little saliva produced in one gland and not much in the other one. Ihad lost all my teeth after years of dryness.

I guess I felt that the test showed I was dry and I already knew this because of how my mouth and throat felt all the time---dry. I spend much of my time sipping liquids and sucking on sugar free cough drop or candy.

I guess the point I want to get across is that spending a lot of money to find out if our glands are working can be a financial burden and so often a lot of the testing we go through doesn't result in any info that helps us. It doesn't matter if we are serum negative or positive, etc. So many things to "prove" the disease can make our emotions spin out of control. The bottom line is that we get help for our symptoms as they are what drive us crazy. So often it is the simple things that keep us going. Any info that other Sjogrens patients or people with dryness can give us really help us deal with the disease.

Just a note about Plaquenil. We are taking a very low dose of this drug even at 4oomgm.This drug is a drug used to treat parasites and malaria and found years ago to help the people with rheumatoid arthritis and other connective tissue diseases. Plaguenil is a strong anti inflammatory. It can cause eye issues but is much less to do so at the lower dosages

If a person can only tolerate 100 mgm a day try taking 50 mgm in the morning and the other dose at night and always take with food. I 72 years old and have had autoimmune disease since early 20s. Had symptoms all those years but not had tests until in the 2000's.

Chronic disease is the pits and can make us down in the dumps.The best thing a person can do is to make sure that they take antidepressants as people with Autoimmune disease have a high incidence of depression. Also, the meds help decrease pain and help us cope with life. When we are able to cope we are able to learn to adapt to our new normal. We have no choice. Learning to find ways to make ourselves comfortable really does help us live a better life.

Remember that Sjogrens disease affects the secreting glands. Our brain secretes chemicals and if these chemicals get low depression sets in. This is my theory on the depression in Sjogrens. We are known to have a high amount of anxiety also. We need to not panic and not demand instant answers cause they are are to come by. If we place this stress on ourselves our symptoms will get worse. Good luck to you Sharon and to all others. Irish


Title: Re: Lost hope
Post by: Sharon on January 05, 2016, 04:41:06 PM
Thanks Irish,
Why divide the Plaquenil into day and night? It makes me fall asleep so I've been only taking it at night.
As far as antidepressants- don't they make dry mouth worse?

The reason I had the salivary exam done was because the surgeon who's supposed to treat my chronic parotid swelling insisted on it before he would consider anything. Thankfully, I didn't have to pay for it since it was approved by our health care system. I do regret doing it though.  :-\
Sometimes ignorance truly is bliss.
Title: Re: Lost hope
Post by: sixty on January 05, 2016, 07:32:06 PM
Irish, your theory about depression is completely interesting!  I never thought about the fact of the brain not as able to secrete the chemicals that prevent depression.  I've never heard it discussed anywhere else.  Very enlightening.
Title: Re: Lost hope
Post by: cccourt1942 on January 06, 2016, 08:32:41 AM
This is for Irish:
      Irish...you never post anything where I do not learn something.  Thx.

To your specific query:  How many have expensive (and expansive :) )  tests, etc.  In this case for salivary glands.  I "think" I might answer this.  About 5 or 6 years ago I was hit with a new pain in my general abdominal region.  Because I wasn't sick (ha, ha...little did I know) I tried to walk the pain off.  Didn't help--made it worse.   I kept having these attacks.  Finally hit an Urgent care clinic one evening.  The dr. said "sounds like gallbladder."  It was the holidays, I told him I had an appt with my gastro in mid January..and he assured me he could help.  Don't recall what he did.  Googling gallbladder, I learned how to eat if you have gallbladder probs.  I adopted/adapted.  Between that time and the removal of the organ I never had another attack.

Here's where/how I answer your question.  First "test" was ultrasound.  Simple enough...but he had already ordered the nuclear med test for the gallbladder.  I was obedient.  Had the 2nd test and follows exactly how the salivary test went.  Right down to the time.   

Had the surgery, and afterwards surgeon announced it took longer as I had two "ping pong ball" size stones.  Of course this was done...oh..what's it called....minimal incisions...anyway...had to break the masses up to remove them in pieces.  Go home...no probs.  Never took a pain med, had to make myself stay down (as instructed) and went back to work after about 3 or 4 days.  (working part time I must add). 

It was much later I wondered why they did the nuclear test when the ultrasound would have detected the masses in the gallbladder.  Well...had been dismissed from the surgeon---never to see him again---and the gastro retired.  Never seen one since to ask. 

It's strange you make this post as I have wondered the same thing.  After five years of up close and personal treatment for sialadenitis with my ENT, I wondered how long I would suffer that condition.  This guy was about 5 to 7 years younger than me...so I thought of him as old school.  I never questioned anything.  Bottom line:  He would (MY TERM>>>NOT HIS) "milk" my parotids.  Literally watching to see how much saliva he could squeeze out of the duct.  This was his "measure."  After SjS dx  I wondered if that is what he was measuring for.  Nope.   He was measuring to see when / if I needed dilation of a duct.  He did this once.  It happens it is the only one of the six salivaries which isn't hardened.   He said that was coincidence.

  So...why the test???  Can't be ANYTHING but for money.  Zero other reason.  Did anyone tell me this?  Nope.  Just had to see the price of the two tests.  This was my second hospitalization after Medicare had kicked in.  It was an overnight deal, and don't clearly remember anything about my portion of the bills except to say the most expensive part of all the treatment was for that nuclear med test.

    My main question is: Do insurance companies require these tests??

c3

 
Title: Re: Lost hope
Post by: Sharon on January 06, 2016, 10:37:56 AM
My insurance is requiring tests for the accurate diagnosis of SJS.
If I don't do them they will not participate in the cost of meds.
Title: Re: Lost hope
Post by: quietdynamics on January 06, 2016, 11:38:42 AM


We are all in different places with sjogrens.
Perhaps for some younger or at the start of their journey having these tests will save them the costs of added dental/periodontal care that will save them significant costs down the line ( which are not covered by insurance).
The test I had also indicates progression, damage, change of treatment protocol and monitoring.
"..scintigraphy's ability to differentiate parenchymal damage from neuropathic or other derangements of the salivary apparatus .."
".. finding distant metastases that may not have caused abnormalities in routine blood work."
Test was ordered after 'spit test' resulted with below average and frothy (even while taking pilocapine) and condition of tongue, etc.

No, not a matter of squandering money, as Dr. has me not have redundant labs performed by other Drs.

Sharon.. I read in one study that pilocarpine after 6 month improved salivary function. It did not specify if the dysfunction was due to ducts or cell damage. Dr. increased my daily dose and added that studies showed it could help my eyes as well. You could give it another try at the lowest dose available, even breaking those in half to build up tolerance, taking after a meal. May be worth a try. And adding a few drops of lemon juice to the water you sip though-out the day. Cervimelin is sometimes better tolerated by some patients.

Hoping you get some answers at next Dr. appt.
Title: Re: Lost hope
Post by: Sharon on January 06, 2016, 12:40:52 PM
I did try building up tolerance but stopped trying after I found the improvement
in saliva flow lasted only an hour. It's just not worth all that suffering for 1 lousy hour.
I'm trying to get some of the Cervimelin/Evoxac.

Went to a big Sjogren's specialist today- rheumatologist.
He didn't tell me anything I didn't already know and only had Plaquenil to suggest (once again...)  :-\
He referred me to a salivary gland specialist to consult with concerning the results of the Sialography.
I'm so tired of all these "specialists" already (sigh).


Title: Re: Lost hope
Post by: angeldancer on January 07, 2016, 01:21:54 PM
I am terribly sorry for your pains and discomfort and everything you are going through. I agree with Joe.  I have taken a lot of meds and I have found for myself that if I stay true to my ginger, carrot, green tea, and other herbal regimes I feel better.  If I drop off then the glands and everything goes awry.  You have a long journey ahead of you and I mean that a long journey.  Use whatever means necessary to find out what relieves your symptoms.  I was told that I have degeneration and I should stop doing everything.  But I have to tell you, when I move I feel better.  So I am pushing through this awful dryness, pushing through the pains, pushing through these weird things happening in my body that I have no control over.

Just know that small improvements means a lot.  Our new normal is finding the things that makes us want to push on through this.  Mine is my bucket list.  Not much on it but the stuff on it I want to accomplish including living to see grandchildren.  Living to see both of my children married.  Going to Canada and Fiji.  Don't know if I am able to fly such a distance but you know what I going to save every can bottle newspaper whatever so I can have the opportunity.

I just finished cancer treatments and now have to be watched every 3 months. I would not wish on anyone chemo and radiation because I almost died.  I have to live today.  I plan on surviving and I know some days I will have to hold on tight to make it through and then when I have my day that allows me to be able to help others I will.  Lately I try to push through my stuff without coming to our world and sometimes I just read or respond but as long as I am here and breathing I will continue to push.

Please fight through these times that seem unbearable. Try something and if does not work try something else.  when you need a break from the medical mumble jumble take a break.  Give yourself a moment to breathe and meditate.  We all get down but do you.  What makes you want to survive?  At this moment I am tired of meds and although Ido take my heart medicine, I am taking a break from the others because of the side effects.

Holding you up with good thoughts and prayers,
Angeldancer
Title: Re: Lost hope
Post by: Sharon on January 07, 2016, 02:26:58 PM
Thank you so much for your supportive words Angeldancer.
I am taking so many supplements I can no longer see my kitchen counter from them all.
Sounds like you've really been through the grinder but push on.
My reason for pushing on up until now had been hope: Hope that this wasn't really SJS, then hope that this battle could be won and I could unring the bell of SJS, then hope that the sicca symptoms would be the worst of it...
However, I now know that none of that is true and therefore no longer have "hope".
It's difficult to look forwards to living a miserable existence with ongoing degeneration.
I really do not know what else I have to look forwards to in my condition at this point.  :-\
Title: Re: Lost hope
Post by: Jasper on January 07, 2016, 03:12:01 PM
Sharon ..... you asked about the guidelines for testing by an opthamologist or retinal specialist. Here is part of an article about the guidelines for types of tests and also frequency of the testing. Also, I included only part of the article so you may want to go to the link to read the entire article.


Revised Recommendations on Screening for Chloroquine and Hydroxychloroquine Retinopathy

"Retinal toxicity from chloroquine (CQ) and its analogue, hydroxychloroquine (HCQ), has been recognized for many years. The first reports concerned long-term use of CQ for malaria, and later reports showed retinopathy after treatment of anti-inflammatory diseases.1,2 Chloroquine toxicity remains a problem in many parts of the world, but it is seen infrequently in the United States, where the drug has largely been replaced by HCQ for the treatment of systemic lupus erythematosus, rheumatoid arthritis, and other inflammatory and dermatologic conditions. Retinal toxicity from HCQ has a low incidence, but many thousands of individuals take this drug for medical indications.3 Toxicity from these drugs is of serious ophthalmologic concern because even after cessation of the drugs, there is little if any visual recovery, and sometimes progression of visual loss.4 Thus, it is imperative that ophthalmologists and other physicians be aware of this disorder and take measures to minimize its occurrence and effects.

The 2002 version of this document5 was prepared because different screening regimens had been proposed, which varied considerably in practicality, costs, and cost/benefit ratio. There was need for a consensus recommendation. The Physicians? Desk Reference, for example, recommended quarterly examinations that would represent an enormous burden on health care resources. Yet most authors concur that some screening for early toxicity is reasonable.

This revised recommendation has significant changes in light of new data on the prevalence of retinal toxicity and the sensitivity of new diagnostic techniques. It recognizes that the risk of toxicity after years of HCQ use is higher than previously believed. It removes the Amsler grid from the list of acceptable screening techniques and advises strongly that 10-2 visual fields be supplemented with sensitive objective tests, such as multifocal electroretinogram (mfERG), spectral domain-optical coherence tomography (SD-OCT), and fundus autofluorescence (FAF). It emphasizes the value of fundus examination for detecting unrelated retinal pathology that may affect the recognition of toxicity, but fundus changes are not considered sensitive enough for screening. The goal of screening should be the recognition of toxicity before bull?s-eye retinopathy is visible on fundus examination. There is no change in the recommendation (for routine cases) to obtain a baseline examination when the drug is started and to begin annual screening 5 years later. However, recommendations on dosage and criteria for judging risk have been revised. These guidelines should provide a basic framework for the management of most patients."

http://www.aao.org/clinical-statement/revised-recommendations-on-screening-chloroquine-h

I hope you can find some good specialists and some effective treatment for your Sjogren's.
Title: Re: Lost hope
Post by: Sharon on January 07, 2016, 03:50:34 PM
Thank you Jasper!
You only begin screening 5 years after beginning the Plaquenil?  :o
Title: Re: Lost hope
Post by: irish on January 07, 2016, 03:53:15 PM
Sharon, THe reason for splitting the dose of plaquenil is that you decrease the side effects by splitting the dose but yet get the hopeful required results. I split my antidepressant as it makes me too sleepy all at once. I have had other drugs that I end up splitting the dose with docs approval.

Generally, antibiotics should not have the dose split. The drugs all have a "half life" or the time it takes for the medication to break down and the length of time it takes for one dose to clear the liver. It gets more complicated than that, but generally splitting a med like plaquenil is not a problem. Many people on 400 mgm a day will take 200 mgm in the morning and 200 at night. Good luck. Irish

Also, antidepressants can cause dryness but it depends on how one perceives dryness and how dry you already are. Some meds cause more dryness than others. Also, many times the antidepressants will help decrease the pain and suffering we have because they affect the pain transmitters in the brain. Heck,anything is possible, cause who knows if you would not have any more dryness but you night feel better.

I really feel it is a crime that docs don't use antidepressants with autoimmune patients as they just make us feel better. Improves our pain tolerance and tolerance for other debilitating aches and pains. We don't know unless we try. Remember that antidepressants take at least 4 weeks to kick in and that most of the weird side effects will decrease as time goes on. Remember also that it works really well to start out at 1/2 the dose for a couple of weeks and then increase to the full amount. Gives our body time to adjust.
Title: Re: Lost hope
Post by: Sharon on January 07, 2016, 04:13:09 PM
Thanks irish, I was prescribed Elatrolet before because my rheumy insisted I have Fibromyalgia and it made the dryness worse (and it's already really bad as is!).

Strangely enough, the new rheumy "big SJS specialist" I went to this week doesn't want to prescribe me ANYTHING! Not even Plaquenil! This is because he claims there is no systemic involvement in my case, but the Sialography exam shows degeneration of my salivary glands.... :o :o :o
I just don't get it...I'm supposed to wait on the meds and allow the degeneration to continue???
Title: Re: Lost hope
Post by: Jasper on January 07, 2016, 04:40:17 PM
Sharon ..... you need an initial screening when you first start taking Plaquenil. Then they will compare the subsequent screenings with the first screening.

My Rheumatologist wants a screening done every year so I get one done every year.

I believe most Rheumatologists do prefer every year.

The retinal damage from Plaquenil is irreversible so it is something you want to catch early (if you do happen to get damage), so waiting 5 years to screen someone is a bit too long for most Rheumatologists' comfort.
Title: Re: Lost hope
Post by: Sharon on January 07, 2016, 06:00:58 PM
Thanks Jasper, got it.
Title: Re: Lost hope
Post by: Linda196 on January 13, 2016, 05:14:14 AM
I agree with you, blue gardenia, it would be useful to have some way of sorting posts by country/

Araminta, as promised we discussed posting a sticky not regarding member locations, and it was discouraged for a couple of reasons.
All posts on Sjogren's World are public and can be read by anyone, not just members. while posting a country isn't very location specific, it still gives general information to anyone.
A "sticky" only keeps the thread at the top of the page, in order to find a specific member in that thread, one would have to scroll the whole thread, or check that member's profile for posts, and for a member who posts frequently that could involve a great deal of scrolling.
Alternatively, we suggest that members who chose to, place their location in their profile. In that way, only members can access it, and if anyone is curious about treatments or medications mentioned in a post, they can simply check that members profile to see if the location was shared. Please note, profile is exclusive to members, but signature line is not, so we do not recommend posting location in the signature line.
Title: Re: Lost hope
Post by: araminta on January 13, 2016, 01:07:20 PM
Thanks very much for getting back to us about this so quickly, Linda.   I have sent you a personal message about it - I may well be missing something but I can't really see the risk in the general public knowing that someone (using an assumed name) lives in a particular country?   Also I have suggested the idea of a thread with country headings, so that we could contact a moderator to ask to have our (assumed) name put under a particular country.
Title: Re: Lost hope
Post by: araminta on January 14, 2016, 06:36:53 AM
Following a message from Linda I now appreciate that because of the very large number of countries which use this site, the small number of moderators, and internet phishing, a location thread is not going to be possible.   I was amazed at how few moderators there are for this forum which is so  helpful to so many people.

Title: Re: Lost hope
Post by: irish on January 15, 2016, 10:24:12 PM
This site is very active but it wanes and ebbs because of the weather, peoples work schedules and other activities plus peoples health status. There are times we have more moderators and then times when we have less. Moderators need to take time off due to health status also. If you hang around you will notice changes time to time. This site also depends on the members to share information and keep up a dialogue with each other. I have been here for probably 11 years and there are a few more like me. I am one of the elderly members at 73 years tomorrow.

It is great to glean all the info that people bring to the table here. Good luck Irish.
Title: Re: Lost hope
Post by: Staying healthy on January 17, 2016, 05:12:03 AM
Hello everyone.
My cousin who also has SS mentioned something that I've been thinking about for a few years. She said that when she uses Iodine sea salt she feels better. The United States government started to put iodine in salt to prevent thyroid disease in the year 1900. Now, with the new interest in purity of sea salt, companies have taken it out even though iodine has been proven to keep people healthy. Also, I watch a program on PBS called healing quest and they recommend eating fruit to get half of your daily need for moisture. Also, my eyes are very dry but computer use makes it worse.
All the best to everyone. Take care.