Hey guys! Long time no talkie!
Wanted to post an update on the CoQ-10. I think someone posted a really promising study on the CoQ 10 ubiquinol form at 100mg helping with dry mouth, eyes and other Sjoggie symptoms.
I've been taking it for almost two months now and I have to say I absolutely love it. So many things improved! Mouth, check. Eyes? Check. I was no longer having to use eye drops multiple times a day and instead only just before bed or when I woke up in the morning if at all! I was no longer having to reach for water or xylitol mints to stimulate my saliva. Oh and I could totally form a little spit ball! Haha Also - esophageal reflux was improved!
I had some lung and hormone stuff in between all this so it was hard to see what was causing what, but I did have some sleeping problems. I switched the hormones to the morning, finally stopped the inhalers/steroids and was still having some sleeping problems.
So unfortunately it seems like the CoQ-10 works GREAT but...contributes to insomnia.
So given that is gives me some great energy I'm going to visit my Psychiatrist and talk to him about the combination of Vyvanse and CoQ-10. I think the only reason we went up to 60mg was to help with my fatigue and if the CoQ helps it, then maybe I could lower the vyvanse. :) Since the CoQ is fat/oil soluble I may even be able to get by with 50mg helping some, perhaps. I'm a new Sjoggie and things haven't gotten seriously progressed before I was started on dmard therapy so who knows. Maybe I just need a little bit of CoQ-10 but I know the study saw the improvement at 100mg
So I hope that helps some of you. Feel free to share your own experiences with it here, too!
Hi MetalFae,
I'm the one who originally posted research on Ubiquinol. ;D
I intended to post an update but wanted to wait a bit longer just to make certain.
First of all, the research only related to dryness of mouth, not eyes, since it seems we actually have Ubiquinol receptors in our salivary glands! :D
I have been taking pure Ubiquinol at 200mg daily for a bit over a month now.
I was SHOCKED to begin experiencing an increase in saliva which began just last week after exactly a month of being on this stuff. My burning tongue symptom has disappeared as well!
Can't say I'm "normal" yet, but there's definitely an improvement. :)
Hasn't helped my eyes though, but didn't expect it to since studies targeted the salivary glands for a reason. It hasn't affected my sleep either way and it shouldn't, so maybe something else is contributing to your insomnia?
May I ask what brand of Ubiquinol you take?
I started taking C0Q10 in 2013 and noticed an increase in saliva production. I no longer wake up with an extremely dry mouth. I no longer sleep with water at my bedside. I can go hours now without taking a drink. I no longer panic if I forget to take water with me. I still have difficulty with dry food and pills getting stuck in my throat and esophagus but, overall, I have a lot more saliva than I used to have and I am much more comfortable sitting through concerts and performances with no water to drink.
I do NOT take Salagen or Evoxac. I DO use Mighteaflowproducts ..... mouthwash, lozenges, and lip balm.
I use Super Ubiquinol CoQ10 with BioPQQ from Life Extensions. I take 100 mg every morning with breakfast. It does not interfere with my sleep.
That's great Jasper! Looks like we're 3/3 now for the Ubiquinol! :)
Have you tried raising the dose to 200mg per day to see if it helps even more?
I was taking 100 mg twice a day for awhile, but I take a lot of supplements, and I was getting pill fatigue (as well as price fatigue, LOL) and I dropped it back down to 100 mg a day.
I was originally taking it because it is an antioxidant and it is a necessary nutrientand it helps with blood vessel protection and endothelial function. Many of us are deficient in it, especially as we age, and deficiency is also common in people with certain diseases. Plus, I have elevated LDL and it helps with perioxidation as well as having properties for protecting blood vessels and enhancing blood flow. People with Sjogren's are more inclined to get carotid plaques and are at much higher risk for cardiovascular disease than people who do not have Sjogren's. So those were my reasons for starting it.
It was by accident that I discovered it was helping with the saliva.
I don't think the higher dose made much difference in saliva production, but I cannot say for sure.
I am at a comfortable place now with the 100 mg a day and don't feel the need to increase it. It would be interesting to know if increased dose did translate to increased saliva production.
Here is some information from Examine.com with links to studies:
https://examine.com/supplements/coenzyme-q10/
Great link Jasper, I see it's also used for Fibromyalgia....I'll see if it helps with that as well.
You're taking an expensive brand so I can understand the cost considerations.
I ordered from "NOW" which is cheaper.
I do wish it could help with eye dryness though, find any supplement for that?
Wow!! This is great news!! Maybe I can get off Evoxac!
Kimberly
Sharon - I take HydroEye supplement and it seems to be helping my dry eye. It's fish oil, black current seed oil, and mucin. The black current seed oil contributes GLA to the omega 3s which is supposed to help dry eye. My ophthalmologist recommended it. It's pricey, but I bought the 3-pack from Science-based Health - 20% off and free shipping - which lowered it some.
Thanks Sooki, I'll look into it
I am not sure about the dry eyes. My eyes are improved, but I don't know for sure why.
I know the Restasis helps a great deal. My eyes were so gritty and irritated before Restasis and no OTC drops helped. Once I got on Restasis, my eyes cleared up and are no longer gritty as long as I use the drops am and bed time. They also don't feel irritated. They will start to bother me about 12 or 1 pm if I forget to put the drops in in the morning.
But it is not just the grittiness and irritation that is gone. I also have more moisture in my eyes. I won't go so far as to say tears, because I don't seem to have tears. I have not cried in years. And even sad movies or stories that make me feel like I am tearing up, actually produce no noticeable tears. Maybe just a tiny bit of moisture, watery, but nothing is running out my eyes or down my cheeks like it used to do. But I will take even a little bit of moisture as opposed to none.
So, my eyes feel better and seem improved. I know Restais helps with tear production as well as moisturizing and decreasing inflammation. So that seems to be working.
I also think high dose Omega 3 fatty acids are helping with the moisture. Some studies have shown that Omega 3 fatty acids in high doses do help with moisture.
http://www.ncbi.nlm.nih.gov/pubmed/19227095
I know there are more studies but I cannot find them right now.
My opthamologist is the one that told me to take high dose Omega 3 fatty acids. I use Life Extensions brand mostly. I use the Super Omega-3 EPA/DHA with Sesame Lignans & Olive Extract.
I know Life Extensions CoQ10 is not cheap, but they are a quality company and I buy a year's supply when they have their annual sale, so I get it for $27 for a bottle of 30. Not cheap, but a lot cheaper than if I bought 1 bottle at a time at the retail price. Plus, I am a member of Life Extensions so I get rebates that I can apply to the next order.
Good to hear the Restasis seems to be helping you Jasper,
I'm finishing my first month on Restasis and so far no difference.
I also take daily high doses of Omega 3 and Seabuckthorn Oil but those don't seem to be doing much.
Thanks for the update, MetalFae. Glad to hear you and others found something that helps.
What is the difference between ubiquinol and CoQ-10?
Also, what is considered a high dose of omega 3? Sometimes I take 3000 per day between flaxseed and fish oil but I'm not sure I really notice it making a difference with eye moisture.
Sunshine ..... CoQ10 comes in different preparations. One is ubiquinone and one is ubiquinol. They are both CoQ10 but the ubiquinol is more bioavailable and absords better.
From Wiley o line library:
Comparison study of plasma coenzyme Q10 levels in healthy subjects supplemented with ubiquinol versus ubiquinone
Abstract
The bioavailability of the reduced form of coenzyme Q10 (ubiquinol) was compared to oxidized coenzyme Q10 (ubiquinone) with identical soft gel capsule excipients by measuring steady state plasma coenzyme Q10 (CoQ10) levels in 12 healthy volunteers. After baseline levels of ubiquinol, ubiquinone, total CoQ10, α-tocopherol, and total cholesterol were obtained, follow-up lab work was performed after 4 weeks of 200 mg/day of ubiquinone, after 4 weeks washout, and after 4 weeks of 200 mg/day of ubiquinol. Plasma total CoQ10 increased from 0.9 to 2.5 ?g/mL (P < 0.001) after 4 weeks of ubiquinone and increased from 0.9 to 4.3 ?g/mL (P < 0.001) after 4 weeks of ubiquinol. Total CoQ10/cholesterol ratio increased from 0.2 to 0.7 ?mol/mmol after 4 weeks of ubiquinone and increased from 0.2 to 1.2 ?mol/mmol after 4 weeks of ubiquinol. Both the increase in plasma CoQ10 and the increase in CoQ10/cholesterol ratio were significantly better after ubiquinol (P < 0.005 and P < 0.001, respectively) than after ubiquinone indicating superior bioavailability. Plasma ubiquinol/total CoQ10 ratio increased from baseline during ubiquinol supplementation (P < 0.005) and remained unchanged after ubiquinone supplementation. No side effects were noted in this study.
As far as the Omega 3 dose, the dose to aim for is at least 3,000mg a day (per studies). There is a dry eye study going on right now that is using 3,000 mg per day. They know that Omega 3 helps dry eyes. The study is to pinpoint the most beneficial percentages of EPA to DHA. That study should be completed in a few months so it may shed more light on the subject and the dosages. Some opthamologist recommend a higher dose. I know some people on this forum take higher doses.
PS: Link to the article on bioavailability of Ubiquinol versus Ubiquinone CoQ10:
http://onlinelibrary.wiley.com/doi/10.1002/cpdd.73/abstract
Thank you for the additional information, Jasper!
I don't have 'serious problems' with dryness and I thought I was 'lucky'!
But every day for 17 years I've taken
2800 mg Omega 3 fish oil.
200 mg Co-Q 10. Time to switch to Qunol™ Mega CoQ10 100 mg
For 14 years I've taken 15 mg Salagen
And lately I've added Tear Support with MaquiBright, 60 mg.
Of course I get hoarse if I talk very long, and I have a humidifier running as well as using Nature's Tears at night.
I do everything possible to deal with my dryness. And with a great deal of success.
And I learn most of it right here!
And remember I do quite a bit for my thick mucus, too. But that's another post.
Hugs, Elaine
Hi Carolina, how's the Tear Support working for you?
I'd be happy to hear how you deal with the thick mucus, as I believe it's the cause of my plugged up sweling salivary glands and under-eyebrow swelling.
Thanks! :)
I take generic Mucinex every night. And now I plan to add it every morning as well.
In addition I use Simply Saline on my sinuses twice a day followed by Nasocort. This is to clear my post nasal drip thick mucus which is the source of great misery, especially at night.
Hugs, Elaine (aka Carolina)
Quote from: Sharon on January 31, 2016, 10:09:38 AM
Hi MetalFae,
I'm the one who originally posted research on Ubiquinol. ;D
I intended to post an update but wanted to wait a bit longer just to make certain.
First of all, the research only related to dryness of mouth, not eyes, since it seems we actually have Ubiquinol receptors in our salivary glands! :D
I have been taking pure Ubiquinol at 200mg daily for a bit over a month now.
I was SHOCKED to begin experiencing an increase in saliva which began just last week after exactly a month of being on this stuff. My burning tongue symptom has disappeared as well!
Can't say I'm "normal" yet, but there's definitely an improvement. :)
Hasn't helped my eyes though, but didn't expect it to since studies targeted the salivary glands for a reason. It hasn't affected my sleep either way and it shouldn't, so maybe something else is contributing to your insomnia?
May I ask what brand of Ubiquinol you take?
Hey Sharon! Thanks for posting that study! I'm taking the NOW FOODS Vitamin version of the Ubiquinol 100mg. I'm not really sure why, but it did seem to help with my eyes. I have been off it two days now and already sleeping better. However, my joints started hurting and hands swelling a bit again as well as some stiffness and my eyes were getting sensitive to sunlight again. It's subtle, but it's there. Obviously the mouth was the most dramatically improved and just like you said, within a month it seemed to really kick in. However at day two off of it, I have also noticed some vaginal dryness returning again. <-- as for vaginal dryness, that is a wild card and not many Sjogrens studies really address this. In fact, most Sjogrens disease descriptions (even the one in my Rheumatology Primer!) completely bypass that issue and I bet it's just for the same reason most studies don't address women issues. Because women are complicated and hormones are complicated and scientists are mostly men and they don't want to deal with it.
So I'm saying it's helping as I don't think there is any study on it right now.
As for the insomnia...Again, like I said I have doubts that Ubiquinol CoQ10 *alone* would cause insomnia. However, I'm taking Vyvanse 60mg. Vyvanse 60mg alone, does not really affect my sleep. However I systematically decreased all my other meds that were added on over the past few months and the only thing left to get off of that could increase energy was the CoQ10. When I was working, I worked with an RN who was obsessed with taking CoQ10 and it made her incredibly hyper and scatter brained. She got a lot done, but she was all over the place. I had discussions with other nurses about it and they said they thought this particular RN should stop it because CoQ10 can rev you up a bit too much so to speak. Remembering that scenario is how I decided to try going off the Coq10 and see if I could sleep. Sure enough, after stopping it for a day I was able to sleep again. A little less Anxiety as well. Though most of my anxiety was from the steroid inhalers.
So that being said, I'm on Vyvanse 60mg which is my highest tolerated dose and then I added 100mg Coq10. I'm sure the insomnia has more to do with it's use in combination rather than either medication alone. So I will talk to my psych about it. :) Thanks for posting the study - it's been a great help!
You're certainly welcome Metalfae, glad it was helpful for you. :)
I too am taking the Now foods brand as it wasn't as expensive as the other brands I found.
Though I've been taking it at double the dose (200mg), I haven't experienced any improvement other than saliva. I wish it would give me more energy as I've been severely fatigued lately.
I liked your take on doctors not addressing women's issues...
Yes, we ARE complicated! :D
That's interesting.... I have had Sjogren's for probably 10 yrs. I've been taking CoQ10 for about 12-14 yrs??? Not sure. My mouth has never been extremely dry .. so perhaps that is why I'm better than most SJS patients in that regard.
I began taking CoQ10 for my heart .. very glad I did so!
Hi Jazz, you might want to try the Ubiquinol form to see if that improves saliva even more.
I started taking CoQ10 after seeing it recommended on the PBCers blog for the treatment of fatigue. One thing I read was, since it is used to treat fatigue, it should not be taken after 4PM. It 100mg twice a day - morning and noon.
Katie1111
Quote from: Jasper on January 31, 2016, 10:40:14 AMI no longer wake up with an extremely dry mouth. I no longer sleep with water at my bedside. I can go hours now without taking a drink.
Waaait a minute, you mean to tell me that that is not normal??
That's been my life since I was very small. I can't imagine waking up and not needing a drink.
SabbraCadabra ..... No, it is not normal to wake up with an extremely dry mouth, sleep with water at the bedside, or feel the need to drink water all of the time.
I never used to have any of those problems. I did not start sleeping with water at my bedside until I was in my late 30s or early 40s. I never woke up with a dry mouth until my late 30s or early 40s. And I used to be able to go hours and hours with without drinking fluid.
After I developed those problems, I then went through decades of having those problems, so now that they have improved, I do really notice the difference.
I don't know if it is a combination of the meds and supplements I am taking or if it is due to 1 or 2 of them, but I do know that I am a lot less dry and I am very thankful for that. .