Author Topic: Lost hope  (Read 13990 times)

araminta

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Re: Lost hope
« Reply #30 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!!
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.

eelcifer

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Re: Lost hope
« Reply #31 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.
Herniated L5-S1 Disc, 11 surgeries not related to autoimmune problems.  Currently taking Vitamin D 2,500 UI 1X daily, Aleve, Citalopram, Plaquenil 200mg 2x daily, Zantac and fiber.

bluegardenia

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Re: Lost hope
« Reply #32 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


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

araminta

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Re: Lost hope
« Reply #33 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/
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.

bluegardenia

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Re: Lost hope
« Reply #34 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.
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

cccourt1942

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Re: Lost hope
« Reply #35 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
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

SunshineDaydream

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Re: Lost hope
« Reply #36 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
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

araminta

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Re: Lost hope
« Reply #37 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.  :)
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.

bluegardenia

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Re: Lost hope
« Reply #38 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
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

susanep

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Re: Lost hope
« Reply #39 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
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

Sharon

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Re: Lost hope
« Reply #40 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... ;)
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 #41 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/
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 #42 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.
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 #43 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



Sharon

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Re: Lost hope
« Reply #44 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.
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....