Astaxanthin for Sjögren’s Syndrome and Lupus - Vasculitis UK

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Astaxanthin for Sjögren’s Syndrome and Lupus

Paprika60
Paprika60

I have read some very encouraging articles about this strong antioxidant supplement. Low dosage is used for eye health but higher dosage (4 mg & up) used for Sjogren.

Has anyone taken this with good result or side effect? I have HUV with Sjogren and Sjogren has far more negative effect on my daily life due to fatigue and brain fog as I am thankfully on remission with skin hives and joint swelling. I have been on Hydroxychloroquin and low dosage of steroids for HUV for many years so my doctor hasn't really prescribed anything else for Sjogren. But I do need annual antibody treatment. I am trying best to help myself with other things such as healthy diet, regular walk, therapy. I would be grateful for any feedback or information on Astaxanthin.

21 Replies
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I’ve taken astaxanthin for joint support with good results. Not sure about for Sjogren‘s.

Something I’ve noted.... many of these types of symptoms and ailments are actually from exposure to microbes commonly found in water damaged buildings.... are there any signs of mold our water damage in your home or workplace?

Paprika60
Paprika60
in reply to Saassii

Thank you for your response. Good to know that you didn't have side effect. No, I do not have any mold or extra dampness except for the fact that I live in London and it can get very damp during winter. I have heat on all day long and keep the house very cosy and warm as I do suffer if it hits lower than 18 degree. This winter has been extra wet. I have developed my condition since my move to UK from US and I do suffer more during chilly and wet weather. My doctors used to say smiling (!) I needed to live in dry country... but once triggered and developed I don't think change of environment will get rid of one's auto immune condition.

Paprika60
Paprika60
in reply to Saassii

I forgot to ask you if you also have an auto immune condition. If so, are you on immunosuppressant? I ask because there is a warning about it as Astaxanthin is immune boosting apparently. Please let me know if you are taking 4 mg or higher dosage of Astaxanthin. Thank you very much!

Saassii
Saassii
in reply to Paprika60

I have a genetic condition Classical Ehlers Danlos Syndrome and Mast Cell Activation Syndrome. MCAS is over activation of the immune system. Cromolyn is a mast cell stabiliser which reduces activity of the immune system, so while it’s not deemed officially an immune suppressant, it does still carry that kind of effect..,

Medical cannabis with THC in it suppressed the immune system with a synergistic healing effect.... you may find to utilise Medical Cannabis, astaxanthin and even Cromolyn could fix your problems with less risks and side effects. You need a critically clean environment with no clutter, no dust, no damp etc as the first course of action however.

Paprika60
Paprika60
in reply to Saassii

Indeed I tried CBD oil (from an excellent company in Norfolk) a few years ago and found it very helpful. However, I felt it interfered with my cognitive capacity. I found myself very forgetful with a few details from even the a few hours or previous day past. So rather scary! The last thing I need in my situation. Thank you very much for the info and for sharing your condition. Gosh, I have never heard of those condition...but it sounds like you have a very good control over the condition.

Clutter and dust can be controlled to a great degree. And it is also a very good for one's state of mind.

Oh but dampness is an issue. I cannot move to a place like Arizona (380 days rain free) and I need fresh air and daily walk...impossible to control in London. Will have to find another way.

Saassii
Saassii
in reply to Paprika60

You could look at a CBD oil with sativa as the plant as opposed to indica. Indica tends to make a little more forgetful initially, but tolerance usually rises and that subsides. However it isn't agreeable for all, that's for sure, some people metabolize it very well and require micro dose or find it unappealing, others don't absorb it as well and need enough to zonk a horse.

Something useful may be dehumidifing. There are some new products, one on Amazon that was shared here that essentially sucks air out the top getting rid of excess humidity while an inlet injects fresh air. That would certainly lower your difficulties.

Accelerated drying techniques in bathrooms to avoid the problems permanently and also the chemical exposure with subsequent cleaning.

Dilute all air with windows open even when heating.

Hepa vacuum all window sills and keep free of contamination that will sporulate and seed the house when opened otherwise.

Plugs into drain/sinks to stop microbial off-gassing into the home. (One sink iin an operating theatre and patients die of bacterial infection. Beds closest to sinks on wards have the highest rate of bacterial infection.) Bacterial infection in the lungs is typical and bad, you can reduce those regular sources.

Drain seals can be installed into shower drains etc.

Paprika60
Paprika60
in reply to Saassii

Many good tips! Thank you very much for taking time to elaborate. From yesterday I have started closing the drains after washing. I remember reading something about hospital infections from the drains. The same precaution applies to the air hand dryers in the public loos. I never use them preferring my own handkerchief and get out asap when others start using them. You must have installed dehumidifier in all the rooms in your place. I have a humidity reader and it is at about 50. Would you say that is still high? I keep my place warm at about 20 degree with humidity of 50.

Saassii
Saassii
in reply to Paprika60

I'm currently still living in temporary accommodation after a water ingress that caused the entire family sickness within 28 days and that was life-changing for me permanently. Yes I'm researching humidity control now and need it installed into the next home I go to live in.

Yes I don't use the hand dryers either after having learned about them also.

40-50% humidity is ideal. This is a good article:

thermastor.com/relative-hum...

Paprika60
Paprika60
in reply to Saassii

Thanks for sending me the link! Very helpful. Hope your accommodation gets sorted soon. Best wishes!!!

Saassii
Saassii
in reply to Paprika60

A pleasure. Thanks, you too! 😘

OMG!! This powerful keto-carotinoid is an antioxidant that is great for soooo many conditions, including eye diseases, macular degeneration, heart disease, inflammatory diseases, reducing risk of brain damage from stroke, reduces high blood pressure, Alzheimer's, Parkinson's, cancer prevention, anti-inflammatory support, liver disease and alleviate liver damage, visually reduces fine lines and wrinkles, helps lighten dark spots, powerful protection from ultraviolet rays by assisting the skin in protecting itself against damage by the sun, lightens age spots by preventing too much melanin in the skin, inhibits weight gain, when taken in combination with saw palmetto in men it increases testosterone levels, thus increasing libido. I could go on and on about all the benefits to taking this supplement!

Here's some statistics for you..

Studies have shown it is 6000 times stronger than vitamin C, 800 times stronger than CoQ10 enzyme, (which we already know increases energy within the mitochondria of the cells) 550 times stronger than green tea catechins, and 75 times stronger than alpha lipoic acid. It is definitely in a class of its own when it comes to antioxidants, because it filters into every cell of the body! You do have to take it for two weeks before your body fully utilizes it and you feel the effects, but you will gradually start noticing you feel stronger, healthier, less fatigued, less aches and pains, and your face and body skin will start to look healthier, even younger, more vibrant if I dare say!

I would highly recommend almost everyone, healthy and otherwise to check into this amazing supplement! Go ahead and Google it and do your own research before making your own decision, because it does lower cholesterol, blood pressure, blood sugar, and such, lower doses might be better for some conditions, so do your research and find out all the benefits YOU can reap from this!

Here's to better health in 2020!

Peace & Love to all! 😘

Thank you very much for your thorough response! I take it that you are taking it on a regular basis. Could you let me know what brand you take? It sounds like we should all give it a try.

I am just extra careful as I once had a disastrous reaction to serrapeptese which I took for muscle pain.

Healthy and peaceful 2020 to you too.!

Hi again!

Just wanted to follow up with a little bit about myself, I am a cornucopia of autoimmune diseases! I have an eye disease called AMPPE, (Soo rare, only 3 people in the country had it when I was diagnosed) sjogren's disease, lupus, CNS vasculitis, (again, the rare one) and some weird tumor forming condition that I forget what they call it. I previously suffered from chronic fatigue, where I literally had to spend days in bed quite frequently.

I do not take chemo or autoimmune suppressants, or high dose Prednisone any more. I researched what foods to eat and also avoid with autoimmune diseases, and changed my diet, and take supplements. I worked with my drs to wean off the drugs.

There are quite a few brands that are good, and one that gets great reviews is Nutrex Hawaii Bio Astin 12mg. I have also taken Spring Valley, from Walmart, but it is only 4mg, so need 3 or more.

A good article from 2013, by Suzy Cohen printed in the Huffington Post, called, '5 reasons to take Astaxanthan every day', might be a good one to show your doctor.

Seems 12 mg daily with food is what most drs recommend. So, do some research, take some notes, and talk to your doctor!

Best wishes for full remission!

Thank you so very much! How incredible that you have managed to wean yourself off all the prescription medicine while having been diagnosed and suffered from those rare conditions! Many congratulations. I have done quite a few myself including naturopath consultation, limiting diets and supplements and etc.

12 mg. sounds quite high but I will consult my doctor first. So in your case, with Lupus and all those other conditions, boosting immune system has not worsened

your condition somehow! Quite the contrary it seems. I have always questioned the method of shutting down (such as Rituximab) or dampening immune system. It seems like putting a bandaid over for a short term. But in conventional medicine, that is the way in general ,it seems. I have read some encouraging articles on new personalised DNA immuno therapies (T cell) that succeeded in curing an auto immune case at Buckley Univ Hospital in CA. But these are isolated trials and not easily accessible for millions of us.

Your doctors must be very keen on helping you with alternative solutions.

I am in London and have NHS doctors who are incredibly kind, patient, also very experienced and highly regarded but they have different training and outlook.

However, my kind doctor has helped me with lowering steroids so I am on 1 mg. of prednisolone and 400 mg of Hydroxychloroquine daily and some supplements along with organic produce food. So I am doing my best to stay away. But nothing for Sjogren related medicine except for mediation and Bowen therapy. Hence, in pursuit of finding out about Astaxanthin. I will take your advice and get some articles for my doctor. A huge thanks for your generous sharing. All the best from across the ocean.

I personally think you have better doctors over there! I was never very confident in mine, and when they sent me to the Mayo Clinic for evaluation, they came up with a few more diagnosises and kept me coming back for tests for weeks...2 hour drive, arrgghh! But after 9 months of Cytoxan, and super high dose of Prednisone, my face was round and chubby, my back humped, and I gained 75 pounds of chunk. I just finally decided I was feeling worse with the medication that I did being sick, and that's when I started doing research! I went to the doctors and said I don't want to do it anymore, put me on a ween schedule. They tried to fight me tooth and nail, but I fought back harder! If I remember correctly it was about four months maybe five before I was off everything. I was careful I didn't want to jeopardize my health by putting it in shock from withdrawal of course. And to be completely honest with you I prayed to God that if if I'm going to die from the disease so be it, but I'm not going to let the drugs take me out. I just felt for me the drugs were making me more and more miserable. When I first was diagnosed they told me if I didn't start the chemo and high-dose steroids I'd probably die in 2 weeks! I was managing a chiropractic office at the time, and believe it or not they faxed me over a letter saying that one if the women (again, they told me that three other people had my condition, all women) who was 8 years older than me who had only two of my diagnosises and did not start her treatment yet either had just died!! And I had two children and a husband so I had to follow their advice at that critical time. So basically they scared me into treatment but all I know is I didn't want to die yet, LOL

I read and hear some of the journeys that people go through on this site and it brings back a lot of memories!

I would suggest you look into an eye care supplement like AREDS s2, it has Lutein, Zeazanthan, which are similar to the Astaxanthan, being carotenoids, but also has zinc, B1, Omega fatty acids, and vitamin C. I originally started taking for my eye health A,C,and E, but eye healthcare supplements have come a long way and now they're adding the carotenoids and zinc, and omegas, because when you mix them all together it's a potent antioxidant. So maybe that might be a better start than the astaxanthin. Again I suggest to do your research and bring the facts to your doctor for a review! I forgot to mention I also have hashimoto's thyroid, I've had thyroid cancer, had to have half of it removed too... I've more than had my fair share of troubles!

My advice is to never give up, and always keep searching for answers, and always try to do all that you can on your end for your better health!! Sounds like you are doing just that, so keep up the good work! 🙂

Yes, I feel we are on the same page. I will never give up either and I don't believe in relying on medicine alone. The way our body works is a miracle and I do believe my body is always trying to find a way to get better and become healthy again. I think many doctors tend to give you the worse case scenario. I think it may be that they think the patient will not follow through the therapy regime and etc. And in some cases it does happen like that. But to give no hope is just not a good way to heal anybody.

There are so many cases of people being told a sentence (!) and they not only survive but also thrive.

The doctors over here tend to play down things most of the time and take it slowly and carefully. They don't easily give you high dosage of steroids either. I know in the US they do. I studied and lived there for 15 years. Sometimes it is like a carpet bombing...

I too was put on so many different kinds of drugs and they all made me feel worse.

So my case was very hard for the doctors. I moved from one hospital to another four times. All very highly regarded specialists with big names...but their methods were more or less same. What made it harder was that they didn't share treatment records. So I started gathering my own file. But after 18 years of this condition, NHS has changed its policy and we can all log onto our own test results. Not that I can read the blood test results with any sort of real understanding but doctors can now access easily.

I have brought up Mayo Clinic to my doctors in the past and the impression is that they don't necessarily trust Mayo's method.

Your experience sounds quite harrowing but you have survived and clearly have become even stronger. It is true that hardship makes us wiser and stronger in the end but it also makes us somewhat jaded.

I have tried supplements for eye health including Lutein (20 mg) along with Zeazanthan over 6 months period. I didn't have any reaction but didn't find anything different either. Hence my search for something a bit stronger. Have you come across Dr. Susan Blum? She has written a book The Immune System Recovery Plan. I think she had Hashimoto and being a doctor with an open mind found a way to cure (permanent remission) herself and has come up with a new way to deal. She has her own clinic now. I am seeing my doctor in two weeks and will bring materials for him to consider Asterxanthin for me. My old doctor just retired over the holiday and now I am seeing a younger doctor (in his late 40's) so he may have heard of it. Fingers crossed.

I somehow feel so strongly that this condition is going to leave me. I feel my cells all working hard steadily to work well. It could be an illusion, blind belief but the feeling comes over me out of nowhere and I feel it is my body communicating with me.

So I feel better already. I just want to support my body.

Sending you all best wishes!!!

Wow! Just want to say that's what happened to me as well. I had an overwhelming calm feeling that everything was going to be okay and that I was going to kick the system that was making me sick. I could picture myself clear as day being as healthy as I've ever been, and every day that I went to bed I would say that tomorrow is the next day on that journey!

I have a strong feeling that you are going to have the outcome you desire as well! Keep up the good work, and wishing you the best scenario with the new doctor! Sometimes younger fresher eyes are all a step in the right direction! 🙂

Hey, just ordered the book on eBay...$6!!!!

Thanks for the tip, I look forward to reading it, always hope to learn something I don't already know, lol

Plus, cover says also has recipes 😋

Excellent. The liver cleansing soup is wonderful. I may bring you some new dimension to your understanding. Also look into Bowen therapy. I do it to myself everyday whenever I experience pain, stiffness or pressure. And it is magical. When you see it done initially, you don't believe it as the movement the therapist makes is so slight and feels like nothing in comparison to all other physical therapies. But as you lie there and let it rest a bit, your body start regaining balance and it continues healing for days. It is quite extraordinary. After a half year of getting therapy, I have learned how to do simple things by taking a private tuition session by a very kind and understanding therapist with my husband (!) and now my husband helps me with my back area and I do my own head and front neck area. So helpful on a daily basis. : ))

Found this at WebMD:

webmd.com/vitamins-and-supp...

Thank you for your response. Yes, I did read that website info. It puzzled me about the warning to people with auto immune condition taking immunosuppressant. Other sites write very positive things about trials with Lupus and etc. And that's why I wrote on this site to see if anybody with vasculitis has taken it. It will be prudent to ask my doctor first although I would not be surprised if he doesn't know what Astaxanthin is.

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