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View Full Version : Anyone use DHEA or LDN to help treat their lupus?



mystiejm
12-27-2010, 12:51 PM
I was recently diagnosed and was put on plaquenil. I was also looking for other treatment options to add and DHEA and LDN seem like safe options(from what I have read so far). Does anyone here take either of those and did they help? Thanks, Mary.

Linda From Australia
12-27-2010, 03:50 PM
What is DHEA and LDN

tgal
12-27-2010, 04:13 PM
I have not heard of either of them working at all. Plaq., at the doses we use, is pretty safe. Eye problems don't usually happen except at much higher doses (like those used for malaria). I know there are a ton of "natural" type remedies out there but I have never heard of one being proven to work.

Edit:

Linda: LDN is Low Dose Naltrexone and DHEA is a supplement that contains natural steroids.

rob
12-27-2010, 07:08 PM
Here is just one of literally hundreds of articles about DHEA that all report the same conclusion-the possible risks of taking DHEA completely outweigh the non-existent benefits-

http://skepdic.com/dhea.html

In regards to Low Dose Naltrexone, there is, as of now, zero proof that it has any beneficial effects whatsoever in treating autoimmune disorders.

Rob

mystiejm
12-27-2010, 10:32 PM
I really dont know much about DHEA, I need to do more reading but in Dr. Wallace's Lupus book he put that DHEA has a role in the treatment of mild to moderate lupus; it may be particulary useful in patients with cognitive dysfunction and fatigue and it may also decrease the rate of bone loss. I thought hey, I have both of those! I figure its something to at least research.

I thought for a long time that I had MS and is a member of Patients like me and there are many people on there who only use LDN to treat their MS, and with great success. Now with that being said, Lupus is NOT MS, but I have done a lot of reading on LDN and I might try it and see if it helps. I want to see first how the plaquenil helps, so if I do try ldn it probably wont be for a year. The rheumy I have now is not very good, I hope to find a new one that I can discuss these questions with. Thanks for your help! Mary

rob
12-29-2010, 09:22 AM
I really dont know much about DHEA, I need to do more reading but in Dr. Wallace's Lupus book he put that DHEA has a role in the treatment of mild to moderate lupus; it may be particulary useful in patients with cognitive dysfunction and fatigue and it may also decrease the rate of bone loss. I thought hey, I have both of those! I figure its something to at least research.

I thought for a long time that I had MS and is a member of Patients like me and there are many people on there who only use LDN to treat their MS, and with great success. Now with that being said, Lupus is NOT MS, but I have done a lot of reading on LDN and I might try it and see if it helps. I want to see first how the plaquenil helps, so if I do try ldn it probably wont be for a year. The rheumy I have now is not very good, I hope to find a new one that I can discuss these questions with. Thanks for your help! Mary

I do like Dr. Wallace's Lupus book, but I personally would not touch DHEA.

In regards to LDN and MS, I have MS on top of SLE, and a couple of people in my MS group have tried LDN with mixed results so far. There is a possibility, in my opinion, that LDN could have some beneficial effect for people with MS, but there's no proof as of yet. Perhaps in the future, if LDN is found to help those with MS, it could also be proven to help with Lupus, as they are both autoimmune disorders. I would like to see more research in regards to LDN, as there could be some good potential in treating Lupus. Time will tell.

You are doing the right thing by researching and asking for different opinions.

ROb

karenboss
01-16-2012, 12:34 PM
After trying Imuran and Cellcept my dr recommended DHEA, he gave me the name of a compounder with instructions to only go there, he also wrote an Rx so it will be covered by insurance. Not that he thinks it will be a cure all but we are running out of options and trying to get off prednisone. Dosing recommended is 100mg/day.
(I am also on plaquinel)


You should talk to your dr before going on it, even though it is OTC it is not without risks.

karenboss
01-18-2012, 10:53 AM
believe me I am usually the biggest skeptic and not a believer in "alternative treatment". But since my dr prescribed it I have done a bit of research.

The link above from 'skeptic' addresses some of the other claims for this drug but not SLE. some substitive controlled studies have been done that show promise in certain dosing for some SLE patients. Here is some detail that summarizes some of those studies;

http://prasterone.org/pdf/Alt-Med-Rev.pdf

I should say that this isn't my Dr.'s 'go-to', he first tried me on Imuran and then on Cellcept, I am on 10mg/daily prednisone, struggling with active lupus including pericarditis flare. I am also on plaquinell, of course.

I started prasterone, 100mg, today and will post my experience with this drug as it goes.

wish me luck.

SleepyInSeattle
01-18-2012, 12:00 PM
A few years ago when I was seeing a Neuro for migraines, and told him I had Raynaud's and APS (the lupus and Sjogren's had not been diagnosed yet), he put me on 25mg of DHEA per day. That's a pretty low dose, and I have not seen any side effects at all.

He also put me on Magnesium Glycinate (200mg), B2 (100mg), and fish oil (dosage depends on the brand). I was already on prescription Vitamin D to bring my levels up. He didn't imply that any of these would cure anything, but showed me a lot of research that often people with autoimmune issues and migraines were chronically low on those nutrients.

I DO have fewer migraines now....partly because I manage triggers better (red wine, smoked meats, chocolate, etc), and maybe partly because of the supplements. I ran out of the Magnesium for about a month (it's not a form of magnesium that is as common as others, so can be hard to find) and I did have more migraines than usual, which I found interesting.

Anyway - I know that's probably not very helpful, as it's not much of a "yes or no" answer, but it's my experience.

I also take Plaquenil, daily aspirin for the APS, occasional Migraine meds, and use nitroglycerine cream on my toes for the Raynaud's. I would never stop taking any of that because of the supplements, but I figure that under doctors' supervision, at least they won't hurt. My Rheum also knows I take them and figures "why not" - as long as I still take my other meds.