Plaquinel Withdrawel

[JourneyDancer]

Was on 200 mg a day for Sjogrens and High ANA suspected Lupus. I want to try LDN, so dr told me to first go to 1/2 dose for awhile, then none. I am getting headaches like I never had before and Advil, FeverFew, compresses are not working. Looking for help. I have not started the LDN.

[AnnNY]

The only withdrawal you should have is from having your lupus symptoms flaring up as soon as you stop. If I go down, I start flaring slowly or not at all. That said I have no idea why you should stop taking plaquenil in order to take LDN. One drug has little to do with the other. I can't imaging why your rheumatologist would ask you to do that, unless he is uncomfortable giving you LDN. Maybe it's an excuse not to.

[Signat in reply to AnnNY]

What is LDN??? Thanks!!

[AnnNY in reply to Signat]

Naltrexone is a antidote to opiate overdoses. Low dose naltrexone is a small does of naltrexone which is supposed to boost your natural opiods in your brain. Some people report help with pain. It is supposed to help with the immune system, as well. MS patients were one of the first people to use it. It is considered a safe treatment. I tried it and was hoping for a reduction in pain, but I didn't have that. It did seem to help with brain fog, though.

[JourneyDancer in reply to AnnNY]

I have read from people on fb that the are experiencing better lives, less fatique, brain fog improvement etc.

[Hidden]

It sounds as though your autoimmunity is becoming more active now that you are off the Plaquenil. I couldn't tolerate it finally but both times I had to stop taking it I flared up badly with joint pain and small fibre neuropathy.

Are you based in the UK - or US perhaps? I ask because not many rheumatologists in the U.K will consider LDN as an alternative to Plaquenil/ Hydroxy. I'm interested in LDN myself for my Sjögren's but would probably have to go against my rheumatologist's advice to try it. I do plan to ask about it next time I see them though.

I believe it can take some time for things to improve with LDN because apparently it works quite subtly on the immune system so please don't expect too much too soon. I know there's a FB group for people with Sjögren's, Lupus, Scleroderma and RA (plus others of this family) who use LDN. If you're on Facebook you could ask to join as they are very gemmed up on it all

[JourneyDancer in reply to Hidden]

I am in the US. Thank you for your reply.

[Treetop33]

I wanted to to try LDN too, though like others I thought you could take it with hydroxy. I think it works to correct imbalances in the immune system, so different to hydroxy. If it were me I'd get established on LDN first and then try and come off the other - with docs advice of course.

[JourneyDancer]

LDN Low Dose Naltrexone. Do a search there is actually a scientic organization with research on how it addresses cells. There is a fb group for it too. I am presently dealing with severe pain.

[Paul_Howard Partner LUPUS UK]

Hi JourneyDancer ,

It may be worth discussing with your consultant whether continuing with the hydroxychloroquine and taking the LDN in addition may be an alternative solution. It sounds as though your lupus may be flaring because you have stopped the hydroxychloroquine.

Like other members here I am surprised that your consultant would stop the hydroxychloroquine to replace it with LDN. There is currently no clinical evidence that I am aware of showing that LDN is effective in the treatment of lupus, whilst there is lots of evidence showing hydroxychloroquine is a safe and effective treatment for mild to moderate lupus.

[JourneyDancer in reply to Paul_Howard]

First thank you for your reply so very much. I also have Sjogrens, Pelvic Congestion Syndrome, Neuropathy and I have read that LDN helps with Sjogrens and stops the cell behavior that promotes Sjogrens. Spoke to my dr, and he started me again retaking the Hydroxychloroquine and the terrible ringing in my ears came back. But the migraines have stopped. He said at this time the other medications have more side affects than Hydroxychloroquine.

[Djlr in reply to JourneyDancer]

constant RINGING in Ears 🥴is no fun and sometimes it’s so loud (usually when I need to give myself some much needed recovery from “Thanksgiving” )

But -it’s a much better life using an old DRUG LIKE “Hydroxychloroquine” when living with Lupus than not having it.