LDN question

[eva]

I keep reading about LDN

Maybe I missed it and this info has been posted.

Question: For those people who are or have taken this drug - how long do you expect to take it or how long have you taken it?

Is it a lifetime commitment or is it taken it for a limited time?

I used Restasis for over a year - helped at the beginning and then the improvement lasted but did not see any more improvement. I decided to take 1/2 the dosage prescribed (once a day as opposed to twice) and so far, no change.

Restasis is supposedly a life time commitment but I hope not - so I wondered about LDN

thanks

eva

[atta]

Hi eva

Hi,
Havent we met by sjogrensworld.org?
As far as I know, how the body reacts ot LDN depends on the individuel. Especially on the dry eyes. Till yet the most encouraging post I've read is from sjogrensworld, "one week LDN dry eyes gone". And there are also other patients reporting their condition getting better, about which I doubt, I dont trust "getting better" feeling anymore.
I've given a lot of information papers to my doctor today and hopefully tomorrow I will get my prescription.

I think LDN worths a try! For me, I've considered for a long time if I should try it, I collected information and wrote posts everywhere, to the end, I got positive information and also neutral information (no effect and no side effect) and also negative information (no side effect but symptom worse) . I've once read it depends on the gene if LDN works for your immune system, and related to eyes, no one knows!

[eva]

Hi Atta

yes we did "meet"

I have an ophto and a rheumatologist appointment this month - I have SS
but only my eyes are effected. The other symptoms are so slight that I ignore them ( Example: I woke up with a swollen gland this morning - it will be gone within a few hours, happens every couple of month. No big deal)

I see the rheum. because he is the head doctor at the SS Clinic and he overseas the whole SS Clinic.

So I plan to ask both of them about their opinions on LDN.

I've also been asked to participate in some study about using Maxidex - you have to go off Restasis for a month. I don't know any details and not jumping into studies. I'll find out about this before the end of the month and then I will think about it.

So I just wondered if LDN is a drug you take forever or just for a limited time.

Do you know the answer? As far as I know, the Maxidex study requires you to limit the drug for a couple of weeks only. Not sure yet.

Glad to have read your positive attitude on the SS Forum

eva

[painintheeye]

low dose naltrexone

Hi gals,

Please refer to my LDN experience posted on dryeyezone. Check for "low dose naltrexone" thread in the archive.

I am still on LDN and doing OK. I will never get off it as it is the only thing it's helped and with no side effect. But my honest opinion is that the newer your symptom is the better the reversal effect may be. But please remember LDN's purpose is to halt or stop progression any symptoms reversal is icing on the cake.

Also it's really important to check for candida yeast overgrowth in your body. I was on antibiotics on and off for 2 years and sure enough I have symptoms from candida. I am taking diflucan to get rid of my yeast and is on a pretty restrictive diet to keep candida at bay. Candida can lessen or completely eliminate the effect of LDN.

I've only been on it for over 5 months now and I am still learning from everyone else but I have faith in it helping my SS and other ailments. I really encourage you to give it a try. If it didn't reverse your symptoms maybe it is helping you to stop the inevitable progression with this type of AI diseases.

best, Chris

[eva]

Chris

very helpful info - thank you.

I will check out those LDN threads

I assume you live in the US - Restasis is not available in Canada because it has not been approved yet. (I get it because I am in a study group, I posted this before)

Anyway, I have a feeling LDN is not used in Canada but won't know until I ask later on this month. If it were, I think it would have been mentioned to me since I am involved with the SS Clinic. We'll see

If my eyes never got better and stayed the same, I'd be ok with that.

I am inclined to get a soap-box, stand on it and shout to everyone:

Do not put anything into your eyes that's Over the Counter that has preservatives in them - off topic bunt fanatics (that would be me on the soap-box) just keep screaming whether it's appropriate or not.

eva

[painintheeye]

LDN in Canada

I am not from the US, lived in BC Canada during my teen and university years. Now I am in Asia.

I've used Restasis it helped but not as much as LDN has. I don't need to use Panoptx glasses anymore. I can sit through dinner in restaurants, movie theaters, malls and ice rinks for extended hours. All in all, my life would not be the same without LDN.

LDN is available in Canada either through prescription/compoundind pharmacies or mail order through internet pharmacies without prescription. I use the liquid form only as there's nobody here that knows about LDN. I am probably the only one in my country using it. I am blessed to have found it on the net after very desperate searches. Good luck, it may just be the thing to relieve your dry eye problem or other dryness issues.

Best, Chris

[eva]

Hi Chris

After I posted my question, I realised I could find out for myself regarding availability in Canada. So I called the pharmacy

Yes, it's available in capsule form - the pharmacist was shocked that anyone with SS would take it - she said she has only seen it prescribed to people with neurological problems like MS and Parkinson's

Her reply means nothing since it's a small pharmacy and statistically she may not have anyone with SS and if she did, their doctor might not know about LDN - however, I do know that I can get it ,if the SS Clinic doctor approves it.

I will also know more about Maxidex by the end of next week.

Interesting that you get a liquid form - she fills capsules.

Being the nosy person that I am, I asked what strength MS and Parkinson Patients get - she fills Naltrexone capsules at 4.5 mg. Forgot to ask how many times they take it during the day so I could compare it to SS patients who might have posted the info on those threads you mentioned and the ones I plan to read.

From Vancouver to Asia - interesting - I gather you are off Restasis. I want to get off it and will discuss it with the doctors. Using 1/2 makes no difference so I hop none will make no difference. Hate to use drugs unless necessary

Thanks again -

eva

[painintheeye]

LDN liquid

Eva,

get your information on low dose naltrexone official website.

does your pharmacy require a doctor's prescription to fill the capsule? where are you located exactly? i am using the diy liquid from dissolving REvia/naltima/Nodict (all generic names for naltrexone tablets) tablets with distilled water because nobody here especially doctors are familiar with LDN therapy. I will be travelling back to Vancouver this July and I am trying to get a dr.'s prescription to fill capsule if I can because it is a hassle to do the DIY especially it needs to be refrigerated.

If you have trouble convincing your SS doctor for a prescription, go to the LDN official site and they will let you know what info is needed to convince him/her. SS is an autoimmune disease and LDN is targeting AI's so in theory it will work. However, like all medicine, there's no guarantee that it will work on everyone. You will have to try it for yourself. But there's no side-effect with this drug when it's taken at this low level. you shal see for yourself that it does improve your overall wellness feeling if it did nothing to improve your dryness. From your email it seems you've only had SS in a very mild form (only the dry eye) and relatively newly DX? If that's the case, I would think LDN would really work well for you because your lacrimal glands have not been seriously damaged or compromised. That's my 2 cents.

good luck, Chris

[eva]

Chris

Glad you wrote - my personality is pretty well described as " I am like a dog with a bone"

Thus, when I had to go out, I went to the drugstore and asked the Pharmacist to punch in the drug " NALTREXONE" - ( it came up long with the known name of Revia - DIN # 02213826 ) DIN numbers are Canada wide I believe, so if you go to Vancouver, it should have the same DIN number. Other than Canada, this number means nothing.

Anyhow, whoever is reading it, this is NOT LOW DOSAGE, so do not panic

It's a 2 pager but this is how it starts out: "This medicine is a narcotic antagonist used to treat alcohol or narcotic addiction. It may also be used to treat other conditions as determined by your doctor"

Off topic: My 85 year old Mother uses a drug called Warfarin, a blood thinner because she has hardening of the arteries. Warfarin in large doses is a rat poison. Point is, that LDN can be used for many conditions in different doses - I am sure the rats don't die from the dose my Mother takes.

Anyhow, if anyone is interested in the "Patient Counselling Report" it's probably on the Internet, or any Pharmacist would print it off like mine did.

It has tons of side effects - show me a drug that does not. I love watching American commercials about drugs when the announcer whispers the side effect - it's hilarious. Mostly because the announcer whispers while the commercial selling it screams (Canada does not allow drug commercials on TV)

Anyway, I would like to try it. My guess is you can get in capsules in Vancouver if you can get it in Toronto where I live. I cannot imagine the SS
in a teaching hospital would not have heard about it. I'll know next week and will take this print-out with me.

I have an email address that I seldom use unless someone tells me they sent me an email. If anyone is interested in these 2 pages, and thy can't get it through their pharmacy, I would be happy to scan in and email it back

my email is: katalin500@hotmail.com but you have to let me know you emailed me or I don't check it

Yes, I am doing well with SS but as you know the future is uncertain - however show me anything certain in life - except as the old joke says, death and taxes.

eva

[atta]

Hi Chris, Eva

Hi,
I made a simple test with glass water and siliva this morning and I really have Candida! I took Doxycycline for about 3 weeks last winter and I dont know if thats when I got them. Another possibility is that I've got Candida for long time and it caused my symptoms.(6 years) I've always got negative by autoimmune diease test!
I got prescprition of LDN, and I ask in a local pharmacy. 28 capsules (50mg) cost 104 Euro!!!!
I think I will try to kill yeast first, maybe my symptom will go away with that, hopelly! I'm not sure which product should I take. The best product I know is THREE LAC. But I need to buy from UK and they ship me that.
Greetings
Atta

[painintheeye]

hi all

Hi,

I hope you know how to do the DIY liquid preparation for your 50mg naltrexone?

Please refer to the official website for what requirements are and general info on it.

Have you actually tried three-lac and it worked or it's what you heard from the websites?

I bought some threelac and was on it for over one month and yet my candida yeast did not necessary do anything for me yet. I am taking Diflucan first to quickly get the yeast level down and at the same time, I am on a very restrictive diet to boost the overall effect. It is said that candida yeast is very hard to kill off without a proper antigunal or a careful diet.

Good luck, Chris

[atta]

Hi

I bought Nystatin pills today and will get some prescribed medcine asap from a doctor. The therapy with Nystatin will take 16 days. Do I need to wait that long to take LND? What if I still got a lot of Nystatin after 16 days? Do I always need to check the candida level by a doctor? How do I know if Nystatin works?

[painintheeye]

candida yeast overgrowth

I am taking 150mg of Diflucan x 2 day as suggested by Brenda who in turn was prescribed the same by Dr. McCandless. The suggested course is 3 weeks but have your liver enzyme checked in a couple of weeks.

I am told Diflucan is more effect than Nystatin because if you have a moderate or serious case of candida, Diflucan is the only drug that can go into the blood to kill it systematically (I am told, please check Brenda's site) because it will permeate into the blood stream while Nystatin stays in the intestinal tract.

I am not a medical personnel so it's best to ask your doctor for what is best for you. I have chose to take the above protocol becaues I had been using antibiotic quite often and just recently had an urinary tract infection and my spit test is awful. I have quite a few signature symptoms of candida yeast overgrowth and hopefully it will make my LDN more effective than before. My LDN worked wonderfully until a week ago. My old symtom of dry mouth crept back and it's dry now and I figure it must be the candida yeast. And hopefully after I get my candida level under control, LDN will rework it's miracle on me. I am a little bit scared about why LDN is failing after 5 months but after investigation and advices from oldtimers, they all feel candida is the culprit and I should feel like myself again after I finish with Diflucan.

In addition, I am doing the candida diet which is very restrictive to boost the overall detox process. Had a few die off symtoms but currently mild.

Chris

[eva]

Hi all

Hope I don't sound like I am both "dumb and dumber" but the only yeast infections I know about are vaginal - is this what you are all talking about?

The only time I ever had such a yeast infection was after finishing anti biotics and then I would know because the symptoms are obvious. Took one pill the doctor described and that was that

You all seem to be talking about some other type of yeast infection - please clarify

thanks

eva

[painintheeye]

google

please google for yourself under candida yeast overgrowth.