DHEA and Sjogrens

Sheila · Post by **Sheila** » Fri Jul 31, 2015 1:14 pm

Since the start of my MC in 2010, I've been diagnosed with celiac, rosacea and lastly Sjögren's syndrome. There is no treatment for Sjogrens that actually reverses or calms the symptoms other than palliative eye drops.

I've been going through the archives here and doing a lot of reading because I don't feel well and I'm tired of not feeling well. MC is under control with a modified Paleo diet and thank God for that. I found out about my methylation abnormalities and was trying different things without much success. Finally, I found Tex recipe for methylated B12, optimized folate and P-5-P and started that a few days ago. I'm also experimenting with CBD hemp oil for pain and it seems to have some promise.

I read yesterday that patients with Sjogrens have significantly lower DHEA levels that other AI patients. So, to get to the point, is DHEA safe to take? I know cancer patients probably shouldn't take it because it's a hormone. There are rheumatologists who treat Sjogrens patients with DHEA and I wonder why mine does not. When I go back to Florida in October, I'll ask him. I don't want to make waves with my GI tract and I don't see any warnings about gastrointestinal problems caused by DHEA.

I appreciate any feedback.

Sheila W

brandy · Post by **brandy** » Fri Jul 31, 2015 1:25 pm

Hi Sheila,

I'm not sure if it is safe to take but I'm presently taking DHEA in my bioidentical hormone creme. It is part of my hormone mix. This was prescribed by gyn P.A. You don't have to take it orally.

Brandy

Post by **tex** » Fri Jul 31, 2015 2:46 pm

Sheila,

All I know is that DHEA is typically low in UC and Crohn's patients (so it is almost surely low in MC patients, also). I found one research paper discussing a trial where DHEA was used to successfully treat UC patients who were refractive to conventional treatments. Unfortunately, the paper is unavailable without a subscription. The title of the article is Successful treatment of refractory ulcerative colitis with dehydroepiandrosterone (DHEA) — An open controlled pilot trial, and it can be found at:

http://www.gastrojournal.org/article/S0 ... X/abstract

I would guess that it should be safe for an MC patient to take, but of course as Brandy points out (and as is always the case), YMMV.

Please keep us posted if you try it. Who knows? You might be feeling "off" because your DHEA is extraordinarily low. Maybe such a treatment is "just what the doctor ordered", as they say.

Tex

brandy · Post by **brandy** » Fri Jul 31, 2015 4:22 pm

Hi Sheila,

My dhea numbers were low when tested through bloodwork. I think this was November 2013. The compounding pharmacist who interpreted my results said I could go on the oral version until he and my gyn PA dialoged about the creme prescription. Compounding pharmacist said I could take 25 or 50 mg OTC of DHEA and 25 or 50 mg of pregnenolone (also low) until my creme prescription was approved and ready. I felt so lousy I bought the Douglas Labs DHEA and Douglas Labs prenenolone he recommended that came in 25 mg tablets.

I used the Gabes strategy of taper up and cut the tablets in half and took 12.5 mg per day in morning for several weeks (of each). After several weeks I switched up to 25 mg of each. My original supplements were Douglas Labs sublingual. I was on the oral version for about 6 weeks as it was around the holidays and it took that long for gyn PA to approve the prescription and had no gastro side effects.

I never went over 25 mg/day even though compounding pharmacist said it was ok to go with 50 mg.

I did and continue to feel better. On the oral version I started feeling much better (a lot more energy) after around 4 weeks, i.e. it took awhile to ramp up.
The only side effect (if you can call it a side effect) was increased libido around 12:00 noon when I was at work after taken pills at 7:00 am.

The creme version does not give me the libido spike. The creme version feels more natural.

Hormones are controversial. I've been on them for about 1-1/2 years. When I started them honestly I felt so bad that I felt I had no choice but to try them.

https://en.wikipedia.org/wiki/Dehydroepiandrosterone

If you have a compounding pharmacist he/she might be a good resource to talk with. My gyn PA was basically clueless and went with the formula that the compounding pharmacist said to go with given my test results.

Brandy

brandy · Post by **brandy** » Fri Jul 31, 2015 4:35 pm

My fatigue was so bad during this time that I didn't care about side effects and had to try something.

I suspect that MCers that have suffered for several years or more have low DHEA.

I believe the anti-aging MDs will recommend DHEA. My gyn PA and PCP were clueless.

Brandy

Sheila · Post by **Sheila** » Fri Jul 31, 2015 5:06 pm

Thanks Tex and Brandy. I am at the point of trying almost anything to feel better. I'm exhausted by mid-afternoon and feel lousy. I take a small dose of Prempro every other day to counter symptoms I still have after all this time. I know it isn't recommended but my PCP hasn't stopped it.
I will try the formula you recommend, Brandy. I appreciate your help.

Sheila W

DebE13 · Post by **DebE13** » Fri Jul 31, 2015 7:37 pm

I have no suggestions for you but reading about your fatigue makes me want to give you a big hug. Hang in there! :bigbighug:

Hopeful · Post by **Hopeful** » Sat Aug 01, 2015 5:52 pm

Sheila, I am watching this post with interest as I was also diagnosed with Sjorgren's a year and a half ago. My Rheumy had nothing to recommend and my eye doctor said I could go on Ristasis if dry eye got any worse. I don't seem to have dry mouth, but my throat and bronchials are very dry in the winter and I'm constantly hacking. Since we can discuss "personal" stuff here, I'll share that my vagina has been like the desert for almost a decade!

I know that I mentioned this a while ago, but I started taking N.A.C. (n-acetyle-cysteine) about 9 months ago. It has made a big difference in the dry eyes as corroborated by a recent visit to my eye doctor (she was excited to know how I had accomplished that!). We had a REALLY harsh winter this year and the wood stove was blazing for months on end, but I completely lost the dry hacking cough and had no bronchitis!

I don't know if the NAC counteracts some of the other non-sicca symptoms of Sjorgren's. Because I've been on the strict diet for nearly a year, my joint pain has diminished significantly and I was less "chilly all over" this winter. I am also less fatigued although I still have significant sleep issues. So, is it the diet or the supplement regimen?

Just offering this up for you to think about. Like you, I feel like a lot of health "stuff" got piled on my plate the last 5 years, but I feel a real sense of hope. I sure hope that happens for you, as well. Please keep us posted...
Chris

Sheila · Post by **Sheila** » Sat Aug 01, 2015 7:46 pm

Thanks Chris. I'm going to look into N.A.C. for sure. Since I stopped taking anti-histamines, the dryness isn't quite as bad but is still worrisome. I'm trying anything and everything to feel better. The fatigue is miserable and grittiness in my eyes just makes it worse. I use a moistening spray in my mouth at night and that helps. I have a lot of arthritis and I can't tell whether all the joint pain is OA or Sjogrens, probably a combination of both.

I have a significant number of methylation abnormalities and I am trying to correct them as best I can. I can't help thinking that those abnormalities may be at least partially responsible for my AI problems. The more I learn, the more confused I get.

Thanks so much Chris. If I come up with any suggestions, I'll post them

Sheila W

DebE13 · Post by **DebE13** » Sun Aug 02, 2015 7:22 am

Sheila do you wear contacts?

I suspect I have it too but am not going to be tested since there isn't much help out there. The reason I ask about the contacts is I having been wearing contacts since I was 13 and a couple years ago I went about two years where I couldn't wear them because it was painfully uncomfortable. I would put them in and immediately take them out. My eyes burned all the time and I was miserable. I even had to "watch" tv with my eyes closed frequently because by evening it just hurt too much to see. Now those symptoms may not be related to sjogrens but I went through the steriod drops, restasis, and supplemental tears. Nothing really helped. My eye doctor said the only choice left for me was an oral steroid. I declined and switched doctors. It turns out the inside of my eyelids were inflammed ( another autoimmune response ) and every time I blinked it irritated them making it a perpetual cycle. He told me contacts would provide the barrier to let it heal. I thought he was nuts. Turns out there were improvements in the contact world. He put me in Dailies Total 1 lenses by Alcon that are a one day use only and I had immediate relief! They are expensive little buggers but I can't stand wearing glasses so it's worth it. Hopefully once it isn't so new the price will drop. I still have dry eyes and use artifical tears but in the gammut of my health issue pool- it's tolerable. I have dry mouth too but again, it's something I will tolerate. What choice do we have!

i guess I mean to say that it isn't so bad that I've reached the point of wanting to try some type of meds. My dentist gave me Biotene but there was an ingredient that wasn't safe- I think it was lactose. ??

I hope you find some relief because the sand-in-the-eye feeling is hard to put up with.

brandy · Post by **brandy** » Sun Aug 02, 2015 7:47 am

Hi Sheila,

I thought I'd mention that my dry eye (not Sjogrens) (just computer eye/too much drying air conditioning) improved with DHEA. It didn't happen immediately but was a gradual improvement over months.

Also I was on the lowest dose of prempro the first 6-8 weeks that I started DHEA with no issues.

I've had no issues with hair loss etc. I think that comes with the giant doses the body builders take.

Brandy

Sheila · Post by **Sheila** » Sun Aug 02, 2015 7:49 am

Thanks, Deb for your input. I don't wear contacts, I doubt they make them in trifocals. :-)

I knew there was something different and wrong going on and so did my PCP. The answer came with a very elevated rheumatoid factor. My symptoms pointed to Sjogrens, and I was relieved it wasn't lupus or RA. I go to Bascom Palmer Eye Institute because I have other issues with my eyes. They are beyond thorough.

I've always wished I could wear contacts and I'm glad you found the answer to you eye discomfort. Thanks again.

Sheila W

brandy · Post by **brandy** » Sun Aug 02, 2015 7:51 am

Hi Chris,

Thanks for the tip on N.A.C. I think I'm going to try that for my computer/dry air conditioning eye situation.

Brandy

Hopeful · Post by **Hopeful** » Sun Aug 02, 2015 2:46 pm

I take the Jarrow time release tablets on an empty stomach. I recently googled NAC and was surprised to see that it has many anti-depression/psychosis applications as well. Some people take more than 1 tab a day, but I'm taking so many supplements right now that "less is more" for me. They are reasonably priced, too.

Good luck, you all!
Chris

Sheila · Post by **Sheila** » Sun Aug 02, 2015 3:04 pm

Thanks, Chris. I'll look for time release. I'm in the process of reassessing all of the vitamins and supplements that I'm taking. I'm going to try stopping a few because I've just added 5 new ones. When you feel lousy, you'll try anything, I guess.

Sheila W