DHEA

[helloos]

Hello.

Those of you who have been around for a while probably remember my debate about taking DHEA or not. My rhemo suggested it a while ago and I have been debating from that to the metho drug.

Well, I have decided to take it. I found a company not far from me and it will only cost $30.00 for 30 days, so $1.00 a day. If I have side effects, I will stop and at least know that I have tried it.

I have decided this to either feel better or rule it out.

After these last few events that have thrown me into a bigger flare, I am ok with trying this drug. I will watch it closely for side effects.

I will keep you all updated on this too so that all you that have normal DHEA levels and have been told to take DHEA 200 mg for Lupus can learn from my experience. Guess like i am a ginny pig.

I should pick up today or tomorrow.

[wifajax]

Hi helloos!

I saw an article yesterday on a reputable web site that says DHEA has been proven beneficial to lupus patients. I just skimmed the article, since I wasn't planning to try DHEA, so I can't tell you for sure what it said. I'll see if I can find it again and post the link for you.

I hope the DHEA proves helpful to you. Good luck! style_emoticons/<#EMO_DIR#>/bigsmile.gif

Terri

[londonteatime]

Hi Paula,
My rheumy has been wanting me to take it, too. I've done some reading and the only thing that worries me is that it has been shown to exacerbate heart problems. My arrhythmia isn't totally under control and I have a leaky mitral valve so I'm rather concerned about taking DHEA. My cardiologist doesn't have a heckuva lot of experience with Lupus so I'm not convinced he can advise me. My rheumy isn't flat-out insisting that I take it but he'd like me to if my cardiologist says it's OK.

Has anyone else heard of the possibility of heart problems with DHEA?

Julie

[helloos]

Hi Julie.

I have read that it can cause arythmea (spelling?) but that is a rare side effect. I too have an irregular heartbeat and MVP and have concerns too as every medicine seems to make it worse. But, I know this before taking it, so that is definitely one of the things I will watch for. I am being told that once you stop the med, the side effect is gone when it is out of your system. So, I will try and post what happens to me.

[Clare.T]

Yes I have read about this side effect in various places. One link is

http://www.raysahelian.com/dhea.html

I have mixed feelings about this chap's views but he's always interesting reading as part of a fact finding mission.

And another interesting read.

http://www.consumerlab.com/results/dhea.asp

Paula are you really starting off at 200mgs ? Why do you have to make yourself a "guinea pig" ? You don't have to take the hardest route every time.

Is this pharmaceutical grade ?

Clare

[helloos]

Hi Clare.

Yes, that is the dose. I recalled the rhemo to see if I should start lower and he said no, that is the dose he wants me to take. So I will take and hope for the best. I am going to ask the pharmacist if I can cut the dose in half and try that the first few days. Yes it is the pharmaceutical kind compounded. I gave them prescription and it says that on it.

Don't get me wrong, I am a bit nervouse about this, but I am going to do it. If side effects occurr, I will stop it and at least know that I did try it and then go to the next step.

The pharmacist who is compounding it said that he has seen a few prescriptions coming in and just got one from a rhemo near me ( I chose not to go to this rhemo that is near me ) and I asked if that docs prescription was 200 mg and he said no, that doctor gave 100 mg but that he is seeing high doses for Lupus come by his way.

Fingers crossed !

[londonteatime]

Paula,
You're lucky that you can get it compounded. I can't here -- I called all of the small, privately owned pharmacies that do compound meds and they won't do it! My rheumy wanted me to take 100 mg. per day.

Good luck and do keep us updated!!!

Julie

[helloos]

Hi Julie.

I am wondering if maybe your rhemo can find someone since he is prescribing.

My rhemo said if I can't get near my house to call him that some near him do it.

I am about 30 miles from my rhemo.

There is also an option of mail orders.

[jude mack]

Hi Paula

Good luck with the DHEA, I hope it helps. Take care and let us know how it goes.

Hugs Jude style_emoticons/<#EMO_DIR#>/clover.gif

[raggedyann1]

Julie,

Most compounding pharmacies are willing to mail prescription medications. PM Hellos and get the name and number of the pharmacy she is using.

Take care,
Karen

[helloos]

Ok.

I did my cross and took the first dose of DHEA.

[Clare.T]

Good Luck Paula style_emoticons/<#EMO_DIR#>/clover.gif

Julie, I got my Quinacrine from Panorama Pharmacy CA. They do lots of hormonal preparations.

Cheers
Clare

[pamsline]

Hi Paula,
I'll be watching this post to see how it goes as well. Sorry you had such a hectic weekend. When we play we must pay. Hope you get good results from the DHEA.
Take care,
Pam style_emoticons/<#EMO_DIR#>/wavey.gif

[helloos]

For those who wanted to know about my trial of DHEA. I have started on Thursday so I have been on for five days now. I just noticed at the beginning the first two days the feeling of being on cold medicine, like a gittery feeling. A little hyper. The heart has been speeding off and on and fluttering, but not too bad. I am not sure if my mood is being effected as I have been overtired and over doing it so I'll have to wait on that one. I told my hubby if you see my mood changes please tell me because it may be that. A few times there were headaches but not anything that couldn't be controlled, so I'll continue on and see where it brings me. The side effects feel like when you start taking new medicine and then maybe your body adjusts to it.
No difference in pain or anything else, but as I said, I have been overdoing it too. I am not sure how long it takes to feel a change if any.

[crm1209]

Hi, Paula,

I saw Clare's post and remembered a link to a page I read before about DHEA. It, too, mentions nervousness/jitteriness as a side effect. I'm relatively new here, so I don't know what information you've already gathered on your own, but in case it might be useful I've posted the link; it's from a reputable source. It also summarizes the evidence regarding DHEA's efficacy for lupus (some evidence, but not a lot of converging, scientifically solid evidence from clinical trials yet). In Michelle Petri's double-blind randomized placebo-controlled trial published last year (I think), 200 mg was the dose used, and positive outcomes were observed for the DHEA group, but certainly not for everyone (sigh...).

Good luck, and please take care of yourself. You're brave to just jump right in there with it!

Renee


Here's a link that might be useful: http://www.nlm.nih.gov/medlineplus/druginf...tient-dhea.html (http://www.nlm.nih.gov/medlineplus/druginfo/natural/patient-dhea.html)

(my first attempt at posting a link...I hope it works)
Fixed the link for you Karen

[patsy56er]

Please keep updating your experience with this...........I am considering it to hopefully get off Prednisone. While the DHEA may not be good for my fluttering heart, neither is a 20 pound weight gain from the Pred.

Also, my Rheumy wants me to start on Imuran, any input on that med?

Thanks
Patsy

[helloos]

HI everyone.

Well, as promised, I'd let you know how this DHEA was going.

Last week, Wed/Thurs I was feeling "not right" again in my body. I have noticed that my skin on my face has become quite oily. To the point where I could wipe it with tissue about 3 times a day and see it on the tissue. My breasts have become a cluster of lumps and pain. ( I have fibrocystic disease of both breasts and do get cysts and lumps that are painful) but these were cluster lumps, heaviness, and painful too. I had this feeling of not gittery but only close to that, gittery feeling throughout my body. It was not shaking, I wasn't feeling like I couldn't stop moving, so maybe that gittery feeling doesn't describe it. I was with fever. The first day I thought, maybe getting something, but no other symptoms. The next day though maybe everything is going haywire because of the DHEA. It was obvious that the breasts were changing and skin, so after 2 weeks of 200mg it was safe to conclude the levels of the hormones were being effected. I also had more palpitations and irregular heartbeat - it seemed to be started up again, but not to the point to be worried. I called the doc on Friday and they are out of the office until Wed. I know the rhemo would say if you think it is that, stop it, if not go see gp. So I didn't leave a message with the answering service. I knew if I called gp, they would not know what to do with me. Nothing was obvious, like I did not have a sharp pain somewhere, etc. So I decided with Hubby to stop the DHEA all together and call rhemo on wed to tell him. So, Sat. I stopped Sunday ok for the most part, but last night ( sunday night ) could not sleep....wired..... so I think stopping the DHEA - I was feeling the reverse reaction of my hormones going hay wire,

So, I have no good news to report. Did not notice a difference, but believe that it wasn't taken long enough. I do not know if I will get back on or lower dose or just do nothing at all.

I wish I had more positive news to report.

[LisaM55]

Just thought I would add my experience with DHEA:

I have been on it for at least a year. First my internist/holistic dr. tested my DHEA levels which were extremely low. She started me off on a lower dose of DHEA mixed with Pregnenolone (which is compounded at the pharmacy). After a period of time, she tested my DHEA levels again, which were still extremely low, so she doubled the DHEA levels. I have had no adverse side-effects. I do believe it has helped, although it is really hard for me to tell sometimes. Overall, I think I my pain levels have decreased and fatigue has improved.

My prescription says "30 DHEA/Pregnenolone 15/30mg" I guess that means it's only 15 mg? That's a big difference from the 200 mg? I believe your dr. put you on.

My dr. told me if I noticed any acne or facial hair growth to call her right away - but I haven't had a problem with either.

So, I guess I have had a pretty good experience with it. Hope this helps someone.

Lisa

[bugsy]

<span style="color:#CC33CC"><span style="font-size:12pt;line-height:100%">Hiya Paula style_emoticons/<#EMO_DIR#>/wavey.gif

I just wanted to say that i was sorry to hear that you had to stop the DHEA, i hope that you can start again on a lower dose and it work for you - good luck with what ever you try next style_emoticons/<#EMO_DIR#>/clover.gif style_emoticons/<#EMO_DIR#>/clover.gif style_emoticons/<#EMO_DIR#>/clover.gif

Take care XxX Jo XxX style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/clover.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/clover.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/clover.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/clover.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/clover.gif </span></span>

[helloos]

Thanks that is good to know. I guess for those with low levels it is beneficial. My levels were normal so this high dose was just because that is what they used during the trial tests with people with Lupus.

Since i have stopped now, my body doesn't feel right and I have broken out a little more on the face. The oily part has slowed down but there are the pimples ! I am sure that will resolve. I guess when you play with hormones this is to be expected.

I did not call the rhemo to tell him I stopped taking it. I know that is a no no, but I didn't want to deal with it. I see him next friday so figure tell him then. I can't take 1/2 because it is a pill that breaks open and that would not be good to do. I am thinking when I tell him, I will not want to take a lower dose.

In fact, I may suggest just getting off the Norvasc all together and just leave me on Plaquenil and Naproxen.