[TallDoode]

Hi everyone,

I dont have another Rheumy appt for a couple of months so figured I would see if anyone on the Forums had ever asked thier doctors this question.

My wife drinks this great drink from Costco. Not sure what it is called but you drink an ouce a day and it does all sorts of wonderful things - more energy, boosted immune system etc. I see a lot of "stuff" that is supposed to boost immune systems. Some are bogus I know - but my question is this - with Lupus, the immune system is attacking the body and Prednisone suppresses the immune system. Should people with Lupus NOT boost thier immune systems with suppliments? Has anyone ever asked about this? A friend of mine who has had Lupus for 18 years has switched to an organic and non-processed food diet and hasnt had a flare in 6 years. She drinks Kombucha every day now (which is an immune booster) and has not had any problems but I am wondering if that is because she is not flaring.

I did a search on the forums but didnt really see anything. Now that I am "post flare" I am eating healthier, keeping stress levels down and doing everything I can to keep it from happening again. If boosting my immune system is a good thing, I want to do that too, but dont want it to give the Lupus "ammunition"!

Thanks!

dave

 

[Clare.T]

Hello Dave

You are right in thinking that it is not a good idea to boost the immune system because lupus is not an immune deficiency disease. Our immune systems are malfunctioning so if general immune activity is enhanced so will disease activity be increased.

In fact there are very few substances known to boost the immune system. Such substances would be well known to sufferers from immuno deficiency diseases like HIV/AIDs. And as you say, many of the meds we take work by suppressing the immune system to some extent.

Of course if we suffer from a deficiency, that can lead to increased tendency to infections or other problems caused by deficiency conditions but that is something different from treating lupus.

I am extremely sceptical about claims made by people selling who stand to line their own pockets and I take testimonials with a pinch of salt. Very often people taking magic cures have also modified their diet and behaviours.
With a disease like lupus they might be experiencing a normal lessening of disease activity for unknown reasons.
I think it is better to spend spare money on complementary therapies, maybe psychological counselling, relaxation, enjoyable activities, looking good, and good healthy food, to increase general health, physical and all important emotional well being.

Cheers
Clare

 

[Lily]

Hi Dave,

Without knowing the name of the drink your wife has it's really hard to comment. Various formulations are touted as "boosting the immune system" but it depends on what the ingredients are and also the quality and quantity of them as to whether they would actually do what they say they do. Having said that, no it's not a good idea in Lupus to take and immune booster, we are pretty well boosted thanks very much :lol: :wink2:

I had never heard of the Kombucha tea and have just had a quick look online. I don't know (from my little understanding upon first glance) how it could actually help someone with Lupus - perhaps this person is just in some kind of remission or perhaps it's more the attention to diet and healthy eating that has had a good impact on them. I know some of our members in the past have reported using several things and were going great, then out of the blue they were still using them and went into a flare.............so it sort of disproved the theory they were being helped by whatever the substance was. It seems that there have been some reported cases of liver toxicity with it though and that's a concern. I guess the golden rule is with any of these things, run it by your treating doc and make sure they don't interfere with any meds you are already on.

love
Lily

 

[onetay]

Dave,
This is only what I think so keep that in mind please. Your friend did a lot of changes all at once so it could of been anyone of them or all of them together. I am not sure that it is a good idea to do an immune booster as to me that sounds like you would be feeding the lupus. Kinda like putting a kid in a candy store, watch them go crazy. Ok that is just my thoughts and I have nothing to support my thoughts. I hope that you do find your answers and that you do whatever works for you. I do hope that you are well and doing well also.

 

[Pink Pearl]

Hi Dave,
You do NOT want to do anything which will activate the immune system. We do everything we can to shut it down, not pump it up!

I've heard many "wonder cures" for everything from hair loss to neuropathy in legs and feet. I am very suspicious of anything that is backed up by testimonials, not scientific facts. I want the scientific proof......not something that someone promises. This brings to mind the claim of "blue-green algae" that was being touted in the late 1990's as a do all, be all, cure all, of everything it claimed. It was soundly given tons of testimonials, but no clinical or lab proof of its benefit. Now, it is said to be detrimental to health from micro-organisms contained in it. Gee......

Beverages or anything really, which promise much, but document little, make me question their research, clinical practice and what can they actually prove, not claim. There is a huge difference in those two.
Sally

 

[dixy]

Hi Dave

Im in agreement with everyone else Just found something on echinacia bad idea as it boosts the immunee system. Gets a bit confusing at times. I was a bit of a health freak B4 sle so did that cause it? I was eating all the wrong foods that cause inflamation. How about manuka honey any one with info? sorry 4 hi jacking u post.
dixy

 

[Clare.T]

I forgot to mention echinacea as a good example of what is advised against although a little might do no harm. But why risk it. It is very often an ingredient in the supplements and immune function products. In Germany, where they take their herbal medicines very seriously, it is sold with the warning that it shouldn't be used in cases of connective tissue disease.

Other substances to check out are zinc, liquorice, melatonin, cat's claw & astragulus as examples of what might not be so good for us and might well be contraindicated in certain lupus related problems and potential interactions with various medicines.
It's a good idea to try to be as well informed as we like to be about our pharmaceuticals but it is far harder to get information and often there are contradictions or important omissions even on reliable sites.

It is always a good idea to check out the ingredients.

Here's to health!



Clare

 

[TallDoode]

Thanks for the replies. Pretty much what I thought. When you look at it, Vitamin C is sold as an "immune booster" yet that is one thing we are pretty much told to take (at least I was). The Kombucha I mentioned is NOT the stuff you see on the Wiki that people are growing in their backyard. It is from a supplier (GT's Kombucha) that mixes it into a more palatable drink that promotes overall health - detox, digestive health, GI health (lots of live organisms in it similar to yogurt), nucleic acids etc.

The stuff my wife got from Costco was called "Green Envy". - Daily Detox, Immune Boosting, Anti-bloating, Energizing, Active enzymes and probiotics - is what the ad says. (Do a google search for ' "Green Envy" Costco' and you can see the ingredients. Doesnt seem to be anything in it that would be contraindicated for Lupus but again, anything that says "immune boosting" scares me. She said it made her feel great, especially from an energy standpoint.

One of the issues I am having trouble dealing with right now is the fatigue and to be honest, I am tired of sucking caffiene into my body. I have never been a big fan of caffiene but even after 9 hours of sleep, I need a cup of coffee in the morning to get rolling and a Red Bull at 1:00 just to get my work done. On the nights I dont sleep well and only get 6 - 7 hours of sleep, I am completely worthless the next day and even caffiene doesnt help. Yet I cant nap. I have tried, I cant fall asleep.

So as I look for something to provide energy that isnt caffiene based, it seems that most of the "energy" offerings are "boost your immune system AND provide energy". Not sure of either claim but you are right, we need to be careful so thus far I have stayed away from all of them. But I need to find something because the caffiene is also contraindicated for Lupus

I will discuss with my Rhemy next visit.

Oh, one final question for you all - when you are "between flares" do you still get the fatigue? I am done with my Pred as of today, still on the Plaq but that is the only med. When I was diagnosed in January, my only real symptoms were the facial rash and crushing fatigue. Well after treatment the rash is gone but the fatigue is worse than ever. Wondering if this is normal or if I am still experiencing symptoms. I am planning to have my thyroid rechecked after finishing the Pred because some of my other symptoms could also be a thyroid issue (fatigue, carpal tunnel, dry eyes, and a few others). Sort of wondering when I am supposed to start feeling better! .

Thanks again,

dave

 

[Lily]

Hi Dave,

Yes the crushing fatigue is the bane of our lives, I have some degree of it always much worse when I flare. Some people take a drug called Provigil but personally I feel that if my body is fatigued then it's telling me to rest (yes I know it gets old when it happens all the time ) by getting a 'false' energy I feel it's probably going against listening to my body and doing what it needs. Don't get me wrong I go and do what I have to do, I just pay for it later, what choice do we have!

How long since you had a full blood count done? There might be something show up there that could be contributing to your tiredness, good idea to have one done, anemias that sort of thing may show up. Getting the thyroid checked is a good idea too and maybe a liver function test and kidneys. All things that might be making a bad situation unbearable.

I hope you find the key and some help for this. If you find a magic fix do share ok

love
Lily

 

[TallDoode]

Thanks Lily,

Last blood test was done 3/24 so just a bit over a month ago. I have a dr. appt (PCP) on Friday. Honestly, I think I am flaring again. Temperature is creeping up - I normally run a bit cold (below 98.1 in the ear) but the last few days have been at 98.9 and 99.2 depending on which ear I use - I am so sick to my stomach I am miserable and my hip joints are starting to ache. I am down to 2.5mg of Pred and was trying to get off completely but decided to stay on 2.5 for a couple of weeks to see if it helps. The fatigue is worse this week than ever, but the nausea has been pretty constant since I dropped below 20mg of Pred a month ago. Just hard to say when we are flaring and when we are in the throes of Pred withdrawal since the symptoms are so similar.

Its sort of strange. I mentioned the nausea to my Rheumy and he referred me to a GI specialist saying that it "wasnt the lupus".... yet a lot of people here have nauseau during flares. My tummy does feel better when I eat (usually) so maybe the Pred has given me an ulcer. I hear it can do that.

I have taken Provigil before but it didnt do much for me except make it hard to sleep at night (even if I took it very early in the morning).

I will ask my PCP to run a full blood lab on me, and check the thyroid. If my temp keeps creeping up I will call my Rheumy and see if he wants me on more Pred. That was one of my issues last year before being diagnosed - a temp of 102.5 that lasted almost three weeks. We all attributed it to the Sinusitus.

Thanks again Lily,

dave

 

[Pink Pearl]

Hi Dave,
Your comments on not sleeping well or able to nap sound very familiar. I do have fibro as well as sle, and have found that I need to remove pressure points. I use 3 egg crate pads and 1" memory foam pad on my bed. Without them, I can't sleep. You might try to see if you are able to get any relief by removing pressure points. I have also found that i need to sleep with 2 pillows. With just 1 I am not able to get adequate air. Early on, I got good sleep relief by listening to a calming meditation tape when I needed to sleep. At one point, it was the only way I could shut my brain down enough to rest. Perhaps this will give you a bit of relief.
Sally

 

[TallDoode]

The problem I have is that I *think* I am sleeping like a log. My PCP put me on 1/2 a Xanax to help me sleep. Prior to being diagnosed I would go to sleep easily, but wake up at 3:00 in the morning and not be able to go back to sleep. He felt it was anxiety so the Xanax has really helped that. Now, I go to bed at 9:00, do a meditation breathing thing to help my blood pressure, sometimes listen to an MP3 "mental healing" session after, and am sound asleep by 9:30 - 9:45. I know I wake up once or twice each night, roll over and go right back to sleep. My wife says I dont snore. But when I wake up at 7:00 - 7:30 it is really hard to get moving. I used to "jump outta bed" when I woke up and morning was my favorite time. If I had to get up at 5:00 to get on a conference call it was not a big deal. Now, I look forward to 8:30 pm after the kids are in bed as I know I can go to bed and sleep (any earlier and my wife starts getting worried ) and if I get up early to do a call, I am a mess the rest of the day.

So it doesnt appear to be a "lack" of sleep... I just wonder how restful my sleep is any more. I probably need to do a sleep study or something, or record myself sleeping to see if I am tossing and turning too much or something. I did read something about Lupus and "mini seizures" that drive our brains out of REM sleep which is why people like us have the fatigue but I only read that in one place so not sure how well documented it is.

Thanks for the reply,

dave

 

[pollianna]

Dave my Rheumy who is a lupus expert told me emphatically do not touch echinacea at any cost.

I have the terribble faitigue but found the coffee too powerful. it cased me to crash and burn as it gave me false energy in a boost. I found switching to regular tea did the trick, small regular hits of caffiene and no payback

 

[Lily]

Hi Dave,

It definitely sounds like you are flaring, with the temps and the extra pain etc. crushing fatigue It's possible that last bit of Pred is helping you out more than you realise. The taper may have been too quick and you might have to stay on a low dose for a while yet. After that if this still continues and there's no other thing to contribute it to your Rheumy may have to look at adding an extra med to keep things in check and get you off the Pred. How long have you been taking the Plaquenil and at what dosage? Sorry if I've asked that before but I forget :hehe:

love
Lily

 

[TallDoode]

This morning I took 5mg and have felt great all day (besides when I first woke up and need java to get me started) so it looks like I may be tapering too fast. Even my nausea was better. Took a few Pepto Bismols (my little pink friends) and felt good enough to go with the family to a Mexican restaurant for a Cinco de Mayo dinner. It was fun.

So tomorrow I am going to drop to 2.5 again and stay there for a couple of weeks to see if that helps.

I am on 400mg of Plaq - 200mg in the morning and night - and have been on it since I left the hospital so about four months now. Temperature is back to normal today, joint pain is less and honestly I felt better today than I have in a while so the Pred seemed to be the trick. Just not looking forward to the rubber thighs and painful fingers when I type but you do what ya gotta do eh?

Thanks again everyone!

Best,

dave

 

[Lily]

Good Dave, I'm glad the increase has helped. You could get some 1mg pills off your doctor and taper even slower, that's what I'd be thinking of doing.

If you've only been on Plaquenil for 4 months, there's still lots more room for improvement, even fatigue wise. That's where it helped me the most and also my joints and rashes. I needed a NSAID as well as the Plaquenil for my joints though - do you or are you able to take NSAIDS? It took me around 9 months to get the beast better tamed with Plaquenil, so there's hope for you yet :bigsmile: hang in there!

I'm glad you got to go out and have some fun, puts a little bit or 'normality' back in our lives!

love
Lily