Author Topic: Lost hope  (Read 13993 times)

sixty

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Re: Lost hope
« Reply #45 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.

cccourt1942

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Re: Lost hope
« Reply #46 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

 
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

Sharon

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Re: Lost hope
« Reply #47 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.
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....

quietdynamics

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Re: Lost hope
« Reply #48 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.
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

Sharon

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Re: Lost hope
« Reply #49 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).


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....

angeldancer

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Re: Lost hope
« Reply #50 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
eagles flight//

Sjogrens, Arthritis, colonrectal cancer survivor, Diverticulosis, fibromyalgia, chronic sinus, chronic pain, kidney stones,  chronic allergies, digestive tract issues, norco, plaquenil, ativan, ambien, lyrica, claritan, neuron tin, celexa,predinisome,

Sharon

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Re: Lost hope
« Reply #51 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.  :-\
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....

Jasper

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Re: Lost hope
« Reply #52 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.
ANA 1:160; SS-A+; MSG +; Plaquenil, Rituxan infusions, Restasis, HRT, Curcumin, Calcium, CoQ10, NAC, Resveratrol, Whole Omega, Omega 3, R Lipoic Acid, Acetyl L Carnitine, Krill Oil, Mag. Threonate, Bio-Collagen UC II, NAD+, & Vit A, B, C, D, E, K 1 & 2.

Sharon

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Re: Lost hope
« Reply #53 on: January 07, 2016, 03:50:34 PM »
Thank you Jasper!
You only begin screening 5 years after beginning the Plaquenil?  :o
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....

irish

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Re: Lost hope
« Reply #54 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.
« Last Edit: January 07, 2016, 04:00:22 PM by irish »

Sharon

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Re: Lost hope
« Reply #55 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???
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....

Jasper

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Re: Lost hope
« Reply #56 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.
ANA 1:160; SS-A+; MSG +; Plaquenil, Rituxan infusions, Restasis, HRT, Curcumin, Calcium, CoQ10, NAC, Resveratrol, Whole Omega, Omega 3, R Lipoic Acid, Acetyl L Carnitine, Krill Oil, Mag. Threonate, Bio-Collagen UC II, NAD+, & Vit A, B, C, D, E, K 1 & 2.

Sharon

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Re: Lost hope
« Reply #57 on: January 07, 2016, 06:00:58 PM »
Thanks Jasper, got it.
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....

Linda196

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Re: Lost hope
« Reply #58 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.
Please check out our home page at http://www.sjogrensworld.org/index.html {{INCLUDES A LINK TO AMAZON SHOPPING!!}}
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araminta

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Re: Lost hope
« Reply #59 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.
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.