coenzyme q10

[clairette]

Hello there,
As I am feeling flat,flat and flat, I would do anything to regain some energy. I read that the use of coenzyme q10 can help. What do you think? what's the quantity? what about lecithine for the foggy brain? will it help?
I feel empty but I have no pain (that is a bonus). I go to the gym 3 times a week but I really go there against my will.
Please help me.
I wish you all a very nice and a good night for Australians.
Clairette

[Clare.T]

I shouldn't think they would be any particular help although you might feel better psychologically for taking them and I don't know of any harm that could result. I think I read somewhere that CQ10 could thin blood.

Fatique is a major complaint in lupus but it's important to rule out possible other causes like anaemias or thyroid which might bereadily treatable. Another cause of lack of energy, interest and lethargy can be depression. This can be a reaction to all the changes lupus brings or caused by the disease itself or both. Many of us take anti depressants and several of us here acknowledge that we waited too long before addressing the problem, thinking that we ought to be able to cope.

The main thing about taking complementary medicines and supplements of any sort is that you do your own homework using sites that have no commercial motivation whatsoever and checking everything out. The standard advice is to ask your doctor but many know nothing about these complements. All the same, do ask and always tell any doctor or surgeon about everything that you take.


People often find they get more energy once the Plaquenil has kicked in. Quinacrine ( UK Mepacrine) can be very energising especially taken along with Plaquenil or chloroquine, but that med isn't available in AUS unfortunately.

Do you mean you have no joint pains ? Take it easy with the exercise, don't overdo, but I am sure it will be good for you in sensible moderation. Swimming is highly recommended because it takes the weight off the joints.

Have you been tested for anti phospholipid antibodies ? Those tests are various clotting tests and for anti cardiolipin antibodies ?

I hope you'll feel better very soon

style_emoticons/<#EMO_DIR#>/hugbetter.gif

Clare

[clairette]

Thank you Clare.
I have printed your answer and will ask my doctor. I use to have a lot of pain in my legs'muscles and also in my knee joints but it seems that, now, the pain is chronic for the last 3 years in my neck, shoulder blades areas. I went to the chiro. and every tuesday night I have a massage by a physio. It helps but I have a better relieve from the stretching after the gym. I haven't see a specialist for Lupus yet. I have an appointment with the professor who is a specialist in kidneys and that is him who made the tests and told me I have Lupus.

[Erskine]

try googling abstracts on coq10 and l-carnitine taken together. there aren't any studies specific to lupus yet, but i've been on it for years. it's non-toxic (check with your doc for med/interactions) but impact is rarely felt below 60mg coq10 and 1000mg lcarnitine. can be very expensive if you buy retail. email me if you like and i can give you the title to a research based book on it. i couldn't function without it.

[woodstork]

What positive effects do you get from it?
Thanks.

style_emoticons/<#EMO_DIR#>/smile.gif

[Erskine]

i have shortness of breath constantly. it reduces that by about 50%. i have raynauds. it stopped that completely. i bruise all over, doing anything a guy likes to do, like showing off for his wife by carrying an armful of groceries more than he should. i bruise less, and bruises heal faster. it reduces my resting heart rate. the best is if i combine it with l-carnitine, then i see big gains in energy. i work out regularly, no matter how sick i feel. if i have to take demerol to workout, i do. that handles pain, but the coq10 and l-carn are the only thing that helps the fatigue caused by shortness of breath. i also take 7keto dhea. that helps with fatigue too. regular dhea doesn't work as well as it can convert to estrogen, progesterone (very unattractive in married man like myself) or testosterone. my source for the coq10 info: Natural Energy: From Tired to Terrific in 10 Days (Paperback)
by Erika Schwartz, Carol Colman
(15 customer reviews)

DHEA: from: http://www.thedoctorwillseeyounow.com/articles/other/sle_22/

Sixteen to 26% of women with SLE have increased levels of the hormone prolactin which stimulates milk production in the breast. Studies of lupus, using animals, have shown that increasing estrogen and prolactin levels worsens lupus, while many male hormones seem to have beneficial effects. This suggests that controlling prolactin production through drugs may be a promising new treatment for SLE. As for male hormones, decreased levels of testosterone and dehydroepiandrosterone (DHEA) have been observed in male lupus patients and there is some evidence that increasing the levels of these hormones may slow down the disease.3,4 (the article contains references to the abstracts of the original studies you can google.)



Dehydroepiandrosterone, a sex steroid metabolite in development for systemic lupus erythematosus.

Merrill JT.

Member and Head, Clinical Pharmacology Research Program, Oklahoma Medical Research Foundation, 825 Northeast 13th St., Oklahoma City, OK 73104, USA.

Deficiency of the weak androgen dehydroepiandrosterone (DHEA) and its sulfoconjugated metabolite DHEA-S has been associated with a number of serious illnesses, including lupus, diabetes, Alzheimer's disease and some cancers. Accordingly, supplementation with DHEA has been proposed for a variety of illnesses. Observational clinical studies and in vitro experiments have suggested that DHEA treatment might have a significant impact on immunological function, bone density, cognition, atherosclerotic disease, some malignancies, insulin resistance and obesity. Endogenous circulating DHEA levels, however, may vary widely by gender, age and ethnicity and can be affected by acute changes in corticosteroid production, alcohol intake, smoking, body mass index, medications and thyroid function [1-3]. Clearly, these variables complicate the interpretation of clinical data. DHEA also gives rise to a number of as yet poorly characterised metabolites, further confusing the assessment of its net effects when considered as treatment in heterogenous populations. Given the complexity of potential effects of DHEA and its metabolites, coupled to the diversity of clinical conditions that they might, at least in theory, affect, it is not surprising that clinical confirmation of efficacy in several clinical contexts has been inconsistent and controversial, hampering drug development in what might potentially be an important and widespread market. The current review will consider recent work suggesting efficacy of DHEA (GL-701, prasterone, Prestara( trade mark ) [US], Anastar( trade mark ) [Europe]; Genelabs) in systemic lupus erythematosus.

[raggedyann1]

Hi all,

In regards to DHEA.

In The Lupus Book by Dr. Daniel Wallace, MD these are some of his statements.

" Dhea has been found useful for lupus patients who are low in that male-type hormone." "Dhea has a role in mild to moderate lupus: it may be particulary useful in patients with cognitive dysfunction and fatigue. Doses at or above 100mg a day are effective."

It is not in his book but Dr. Wallace prescribes compunded DHEA for his patients so that he knows they are getting a true dose of it.

Karen

[raggedyann1]

HI all,

I will add one more bit of information. Make sure that when you are reading sites linked from here to double check information that seems important to you. For example the link to The Doctor Will See You Know contains at least one piece of information that is no longer held to be true. The article was written 5 years ago which goes to a saying around here that things written 5 years ago or more are likely to be suspect or changed.

The one thing in my very brief scan of the article pertains to Birth Control Pills. It states the BC pills with estrogen will cause flares in lupus patients. The only women who should stay away from Birth Control pills containing estrogen are those who also have APS or other health reasons that prohibit them from taking BC. The rest of the lupus population can take BC now without fear or flare-up. Now of course there will be a few without APS or other health issues that will still have a flare-up with BC but that is the minority and not the majority.

Please remember that not everything we read is true. I like to google subjects to see if I can come up with the same information from a different site. And if the information is 5 years ago or more to see if I can find current information regarding that treatment, cause, etc.

Karen

[Erskine]

the links i posted were meant as starting point for a google adventure. once i've found a documented study, i use that study title to find meta studies that will point out short comings or abnormalities in that and other studies of a similar nature across the board. once i've got the most up to date info i can find on the next, genrerally all published within the last 12 months, i print that and take it to my doctor. if i've done my homework, he's able to make a recommendation right away and i can decide what to do next. the docs keep the paperwork and use it for recommendations for other docs and patients.