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diagnosed with lupus

james caan

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I apologize because I know this is a board mainly dedicated to BBing topics, but I figured maybe, I could get some suggestions, advice, etc.

So, I was diagnosed with lupus earlier this year, things have progressed so quickly it's scary. The amount of pain I'm in is horrific. I've gotten to the point of having a hard time doing basic things such as grocery shopping, and walking my dog. Currently, they have me on Cymbalta, and have tried nsaids, pain meds, but to no avail.

So, I started thinking of trying injectable curcumin for example, but what worries me is simply... being an autoimmune disease, doing anything that could create a negative response in my body. So at this point, any suggestions would be greatly appreciated, and much-needed.
 

johnjuanb1

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Damn man! I’m sorry! A girl I knew with lupus was on much stronger drugs, but that’s scary in itself. She was on the fentanyl patch. Hang in there! Hydroxychloroquine is used for lupus.
 

Bio

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Be careful with curcumin because it enhances the immune system which will make the disease worse. There's a newer drug called Benlysta (Belimumab). It only suppresses a portion of the immune system. Other treatments like hydroxychloroquine blanket the immune system and cause a much larger immune suppression.

I have Ankylosing Spondylitis, so I feel your pain. It's debilitating at times! I'm on Humira which is a Biologic but just like Benlysta it only suppresses a portion of the immune system. Since these diseases are auto immune, any supplements that are immuno enhancing will make the medication less effective and make the symptoms worse. I'm not saying you can't take it but not in high dosages.

Best of luck to you! I hope the medication helps!!
 

b-boy

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Damn, good friend of mine has lupus. Lupus is no fucking joke, very painful disease. He is on several medications and he has a medical weed card and smokes a lot, he says it helps tremendously.
 

Luv2test

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It may seem like a gimmicky fad, but I follow Dr. Shawn Baker on YouTube and MeatRx.com, and he’s a proponent of the carnivore diet.
There are several anecdotal accounts of the carnivore diet mitigating the effects of some autoimmune diseases-lupus being one. If you’ve hit the “I’ll try anything” stage, maybe you should give it a try.
 

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autoimmune disordes are very complicated, and i strongly suggest changing the thinking that one thing is going to help in a substantial way.

i probably have more experience with none oral curc then anyone here and im not sure where you would find im curc or how you would make it. also low dose is not remarkable. its a sup i really miss and after not having it in the longest time since i tried it i really see the value. though im not terrible familiar with lupus and how it might interact.

i would say take much caution with injecting due to the specifics of lupus.

some sups i stay with that may help are magnesium, zinc, vit d. i also use nac and glutathione.
recently i made some experimental sterile glut as it has also been unavailable and with in 2 weeks my skin was noticable better ( psoriasis ).

it was only a small test batch and i ran out, skin got slightly worse. for me glut is quite noticeable so take great caution if you go do that sort of road.

remember in doing alternative therapies you are essentially venturing into the unknown with your health and your body. this sort of responsibility is not for everyone.

i also use mmj, obscene amnts.
i keep my symptoms 90+% remission and almost never allow myslef to get sick.

been using very small doses of npp as anti inflammitory at times too.
 

whacked

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Not so gimmicky. Reading more and more people jumping on the bandwagon for this.

Dr Jordan Peterson and his daughter “cured” their autoimmune diseases with this approach.

Paul Saladino, MD is the guru on the Carnivore diet. Worth looking into.

It may seem like a gimmicky fad, but I follow Dr. Shawn Baker on YouTube and MeatRx.com, and he’s a proponent of the carnivore diet.
There are several anecdotal accounts of the carnivore diet mitigating the effects of some autoimmune diseases-lupus being one. If you’ve hit the “I’ll try anything” stage, maybe you should give it a try.
 

james caan

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Thanks for all the responses...means a lot to me. Today has been a bad one, feeling like the tin man with out oil. I’m waiting for some results to come back, my rheumatologist Wanted to check a few other things, before deciding what else to add as far as meds. His concern is the involuntary moment in hands, and legs. Keeping my fingers crossed
 

LK3

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as severeral have mentioned diet is really important. getting rid of most carbs and sugars will prob help. be sure to get lots of fats too. there was a female dr who had some great info on this too, i found it very similar to the things i have done but i rememeber if she had als or ms... or her name.

idebenone, res/ptero and ppc are all worth looking into as well.

good luck brotha!
 

Hard gainner

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Have you tried good quality cbd? look up the benefits of baking soda. Try to stabilize your disease homopathicly.apple cider vinegar.Be pro active with your health.Doctor ted Gundry is a cardiac surgeon who lost 80lbs on his diet. Google him.Good luck brother.
 

jhende82

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I feel for you my Mother had it when I was a kid was very traumatic for me and my brother with what she went through. This was the 90’s I have heard treatment is better now.
 

nothuman

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Definitely try LDN
 

Pissbrain259

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I apologize because I know this is a board mainly dedicated to BBing topics, but I figured maybe, I could get some suggestions, advice, etc.

So, I was diagnosed with lupus earlier this year, things have progressed so quickly it's scary. The amount of pain I'm in is horrific. I've gotten to the point of having a hard time doing basic things such as grocery shopping, and walking my dog. Currently, they have me on Cymbalta, and have tried nsaids, pain meds, but to no avail.

So, I started thinking of trying injectable curcumin for example, but what worries me is simply... being an autoimmune disease, doing anything that could create a negative response in my body. So at this point, any suggestions would be greatly appreciated, and much-needed.

Very sorry to hear of your medical misfortune. What was your ANA titer? Did you test positive for anti-dsDNA and anti-Sm autoantibodies?
 
D

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Definitely try LDN

LDN did not seem to help my IBD after taking it for 12 weeks. Many people do swear by it though.

I have inflammatory bowel disease, another autoimmune disease, and have tried a lot over the last decade. Curcumin seems to have a slight benefit as does Boswelia serrata. I have tried a lot that did not help. For me, diet is a huge component and reducing carbs + being in a calorie deficit has had the best results. I imagine the results would not be as significant for Lupus but you might want to consider a lower body weight, lower body fat, and lower calories. Higher body fat + higher calories = more inflammation.

Carnivore diet does seem to help people with autoimmune disease but I imagine that's more of a function of reducing calories and weight and carbs. Won't hurt to try it for a month
 

nothuman

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LDN did not seem to help my IBD after taking it for 12 weeks. Many people do swear by it though.

I have inflammatory bowel disease, another autoimmune disease, and have tried a lot over the last decade. Curcumin seems to have a slight benefit as does Boswelia serrata. I have tried a lot that did not help. For me, diet is a huge component and reducing carbs + being in a calorie deficit has had the best results. I imagine the results would not be as significant for Lupus but you might want to consider a lower body weight, lower body fat, and lower calories. Higher body fat + higher calories = more inflammation.

Carnivore diet does seem to help people with autoimmune disease but I imagine that's more of a function of reducing calories and weight and carbs. Won't hurt to try it for a month

Just from what I've heard from people, LDN seems mostly helpful for people with body pains more than anything else. It's hit or miss like you said though.
 

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