Low dose naltrexone for Sjogren's?

[jen7730]

Just wondering if anybody here has taken or knows anything about low-dose naltrexone in treating Sjogren's sydrome?

I read an interesting case report recently and have also heard anecdotal success stories in it's use -

ldnresearchtrust.org/sites/...

I am currently in the process of getting a diagnosis, but I'm pretty sure I have it, so looking into all options at the moment as i'm struggling terribly. I've been speaking to a lady who was prescribed this off label by her rheumatologist and she has experienced marked improvement in fatigue, brain fog and aches and pains but he told her that it's not pushed as nobody makes any money from it. There hasn't been that much research and it looks like it doesn't do much for the dryness, but in helping the other manifestations, this seems very interesting...

[HollyHeski]

I've taken it now for over 2 years, originally for the symptoms of thoracic outlet syndrome, which it improved.

The bonus was it improved the SS symptoms and I now have a lot less flares.

[jen7730 in reply to HollyHeski]

Thank you! Do you take hydroxychloroquine too and wondering how you managed to get hold of the LDN? (think you are UK based too...)? I'm due to see a sjogren's specialist next month and just looking at all options at the minute. I've pretty much lost my life at the minute due to this horrible disease and I am only 30

[HollyHeski in reply to jen7730]

Hi, I have secondary SS, my primary disease is antiphosphilipid syndrome (APS).

Take a look at my profile to fill in the gaps.

Yes I take hydroxychloroquine (Plaquenil) 400mg daily.

I get the LDN privately through a doctor in Scotland and a pharmacy Dicksons - they are the only pharmacy licenced in the UK. I am in Devon.

I will say they won't give you a prescription without your medical notes and your diagnoses.

Hold on and see your specialist, you can mention to him about LDN?

I'm really happy to help later if you decide to go down that route, just contact me.

[jen7730 in reply to HollyHeski]

Yes, getting a diagnosis is priority right now. Thanks for your help.

[Hidden in reply to HollyHeski]

Just a quick question HH - did you tell your rheumatologist and GP you were going to try and source it and that you’re on it and if so how did they react?

[HollyHeski in reply to Hidden]

Hi, firstly it was recommended to me by a close colleague with APS.

I then bought their recommended book and done lots of research.

I talked it through with my GP and APS specialist, (they knew nothing about it in low dosages) it is not available on the NHS. At the time I was seeing a neurosurgeon and neurologist for my TOS, in Kings Hospital, London who both knew about it, mainly for MS.

It was the last chance for me to get quality life back without going under major surgery.

I was nervous trying anything especially not through a doctor that knows me. I sent all my notes over, had a telephone consultation with a private GP, who was very kind and knowledgeable. Started very low dose, increasing over a few weeks to 4.5mls. I'm now beginning after 2 years to reduce the dose, now currently on 2.5mls.

My GP and APS specialist know I'm on it, its now listed on my medical records. They are pleased its helped the TOS and SS, but don't mention anything further.

[Hidden in reply to HollyHeski]

Thanks for explaining HH. I can’t see any of my lot being keen but will ask them and my neurologist at next CTD clinic apts later this month as something has to give and I’m not able to take anything else. And I too think I’m probably facing surgery otherwise.

[Narita]

Hi Jen. I do take it for Sjogrens...and it is pretty amazing. Things that used to flare me just do not anymore. Interestingly, I have been on it for 6 months. I just had blood work done. My SSB antibodies were still at their usual levels, but my ANA, SED rate, CRP and all inflammatory markers that were previously positive are now completely negative! I do want to add that I have also been taking 3/4 tsp baking soda and Serrapeptase in the morning on an empty stomach, and those also help with inflammation, so it could be a comibined effect. Natrexone is also used with Welbutrin in an drug to prevent binge eating. Interestingly enough, when I am at a low energy point in the day (which is happening less on the naltrexone), I do not crave sweets at that time of day when I used to! Somehow that helps me stay completely off refined sugars/carbs, which also flare me. So, it could also be that effect helping my inflammation.

[jmp51]

Plaquenil works, but it takes a while to see any change. It does not get rid of all the problems though...

[jen7730 in reply to jmp51]

Thank you. Does it help with fatigue or brain fog? I heard it doesn’t do much for dryness either...

[Julie8787]

LDN for Sjögren's Syndrome- I highly recommend reading this interview about LDN for Sjogren's Syndrome with Dr. Scott Zashin, rheumatologist and internist affiliated with the University of Texas.

ldnscience.org/resources/in...