I Think I Have Found A Treatment Not Only For Just Pots, But Other Rheumatic Illnesses.

[E246]

Can I just check - Florinef works if your angiotensin is low?

[jangle]

I can experiment on myself, I think I know a doctor who will give it to me for acne. I'll keep a chart of my vitals/dosage/electrolytes.

I don't know much about Florinef/angiotensin but I do know Dr. Stewart said Florinef is essentially artifical spironolactone. The difference though is probably the difference in a complete therapeutic response.

[issie]

Florinef is artifical aldosterone. Don't know if spironalactone is????

[jangle]

Florinef is artifical aldosterone. Don't know if spironalactone is????

In the email Dr. Stewart sent me he said that florinef is essentially artifical aldactone (spironolactone).

Looking at their chemical formulas, they do seem to have the same stereochemistry. They have some major electronegativity functional groups though and some consitutitional isomerism going on as well. I took two semesters of organic chemistry but I don't know anything about human metabolism of chemicals, so I wouldn't know what significance this would hold.

I'll take Dr. Stewart's word for it.

[ramakentesh]

Some points of thought - not all POTS patients have elevated Ang II. And some appear to have genetic reasons for faulty ace 2 rather than an autoimmune or inflammatory mediated reduction in ACE 2 activity. Secondly, one way to increase ACE 2 activity is to block ang II receptors. They think ang II receptors might be impaired because of chronic elevation of ang II

That's so interesting, Issie. You're the first person who've I heard had the same thing as me....low aldosterone and low renin.

There is volumes of research on this fact - low ald low renin is found in many POTS patients - in some it relates to ang II, perhaps in others it might relate to abnormal kidney dopamine activity (which is being investigated).

I couldnt find much research that demonstrated that vitamin D alters ace 2 expression. And I tend to think that reduced ace 2 expression is a consequence of inflammation perhaps rather than a way to mediate inflammation in rheumatic diseases.

Ive been thinking about trialling a TNF alpha blocker for about three years but worried about the consequences of that on POTS.

Good theory my friend.

From what I gather it is all about the mediator - the mediator appears to be ang II in some patients.

[ramakentesh]

I used to often post about the connection between ang II and the mestrual cycle - but NET expression also fluctuates with this cycle.

[RichGotsPots]

I've been on all doses of Prednisone for the last 4 months, how does that play a role in your theory?

[martiz]

This is an interesting thread.

I am still learning but I looked at my overseas pharmacy and found that I can get aldactone in 25mg or 100mg.

Unfortunately, I just ordered and should get my order very soon (today or tomorrow) and I won't be ordering again for 3 months.

I will add that to my next order and test it. Should I get the 25 or 100 and for how long should I take this?

Marti

[jangle]

Woa Martiz, please contact your doctor before taking any medications. Dr. Stewart sent me a message that aldactone could actually have a negative effect in POTS so please contact your doctor.

To be honest with you this scares me because I don't want people taking aldactone based off my advice. I have absolutely no idea how it might work and I wouldn't want anyone getting hurt on my behalf.

There are other ways to block angiotensin ii. One of them is with Losartan which I have been talking with my doctor and he is willing to try me on. But right now I'm trying exercise and if I don't respond to exercise I'll try the Losartan.

Exercise itself has been shown to boost ACE2 levels and reduce angiotensin ii btw.

[corina]

Hi Martiz, like Jangle said you need to talk to your doctor before starting any medications. I realize you are new here (so welcome to our forums!) so iI thought to copy and paste a part of the rules that apply to medical advice:

Medical Advice

The content of DINET's forums is in no way a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with other sources and a physician. Please keep in mind that treatments that help one patient may be detrimental to another. Members should never try any new treatment without first obtaining a physician's approval.

Hope this helps!

Corina

[POTLUCK]

Hi, I am new to the forum.

I found jangle's theory very interesting and have been reading a lot of Dr. Stewart's work about Angiotensin and nitric oxide. I am on Propranolol for hyperadrenergic POTS. I am adding Losartan currently with the idea that it will block angiotensin 2 type 1 receptors and thus raise nitric oxide, which if I am a "low flow" POTS patient should help with vasoconstriction. My blood pressure runs high lying and standing so cardiologist was willing to try Losartan on that basis.

Also found this article on SARS virus receptor being the ACE 2 receptor (one and the same.)

http://www.rndsystems.com/cb_detail_objectname_WI04_ACE2.aspx

I was thinking maybe other viruses could use this as a receptor also and maybe the body could be mounting an immune attack against its own ACE 2 to fight the infection. If it did this would prevent breakdown of Angiotensin 2, and this could result in the elevations seen in some "Low flow" POTS patients. Anyhow, I hope you will all excuse me as I am new to the forum and jumping right in with an additional theory. I am not always thinking to clear with this illness so if I am off on my theory I hope you will excuse this also.

best wishes to all,

POTLUCK

[Chaos]

Welcome POTLUCK!! Interesting theory about the viruses effecting the ACE 2 receptor. Especially interesting since so many of us became sick after having a viral type illness.

Thanks for the info and adding your thoughts to our forum.

Sorry you have reason to be on here.

[POTLUCK]

Thank you for the welcome.

[issie]

Please keep us posted on how the Lorsartan works for you. I too believe I'm low-flow HyperPOTS - but, I also have low renin and aldosterone levels. I did try Lorsartan and didn't have good results, unfortunately. Thinking maybe IF angiotension 2 is high with me - maybe, it's for a reason. But, also if it's high it wouldn't be high from the axis connected to the kidney because of my low levels. It would have to be high in connection to another organ producing it. (I never had the levels tested.) But, nitroglycerin helps me when I'm having a MCAD attack and the natural supplements that I'm using now are vasodilators and I'm doing much better on those than things that vasoconstrict. So, I'm also thinking my NO levels are low and my symptoms seem to point to low flow.

There is another theory out there in regard to angiotension 2 but in connection to autoantibodies. I posted awhile back on it in connection to a possible connective tissure disorder. Many of us (me included) have connective tissue disorders. The studies were done in scleraderma patients - but, wondering if EDS people may have the same issues. It was recommended for those people to use an ACE inhibitor instead. I guess this doesn't raise potassium levels. I haven't pursued this idea, because - I'm using some natural supplements right now and starting to see some improvements. So, want to try this first.

Just thought I'd throw this out there. If Lorsartan doesn't work, wondering about the ACE - might be my next thing to try. Let us know how you do.

Sounds like you've been dealing with issues for awhile from your profile. Glad you got your DX and hope that you find answers to a better life. Sorry you had to find us here - but, it's a great place with wonderful people. Welcome to the forum.

Look forward to hearing things that you brain storm about. I think it's going to take much more research to find our answers.

Issie

[POTLUCK]

Thank you Issie. Will keep people posted with the Losartan- I have read too much and seen this illness act too strange to count on much day to day- hence "potluck", but today my HR seems to be dropping which is a good sign to me as I am thinking maybe the B-blocker can do its job if the losartan decreases "microvasculature" resistance. I was looking into other ways to raise my nitric oxide and tried Vit. C, which seemed to help me. I tried nitrates, first in the form of a giant spinach salad. then in the form of beetroot juice which has a larger dose. The salad may have helped, the beetroot juice definately lowered my b.p. but wore off and left me with a headache. I am obviously not recommending treatments, but I can recommend caution with the beetroot juice. There are many things that affect nitric oxide, but Dr Stewart's research seems to suggest 2 forms of POTS that have high nitric oxide, and I would think raising your nitric oxide in those cases might make someone worse.

[issie]

Yeah, there are natural things to do and that's the direction I prefer to go. I've tried l-arginine - but found it gave me a horrible migraine like the nitroglycerin did when I had my ER visit. I decided the headache wasn't worth it. I think that jangle is trying alpha lipoic and exercise. I'm also on Vit. C - as I think maybe that's a deficiency issue - not only because of the connective tissue issues but because of the vein dysfunction. So, that's a daily thing to take - along with at least one fresh lemon in water daily. That helps to detox your liver and if your bottom bp numbers are up - sometimes it indicates that your liver is not working properly. I've got my bottom number down to near normal now. My top is still staying too high. But, I'm not supposed to take betas because of MCAD it causes degranulation of histamines - then major allergy type issues. Unfortunately, it seems to attack my heart (possible Kounis syndrome) so, want to keep that under control. For low flow issues - I'm finding grape seed extract to be helping - I take a complex that also has green tea and bilberry in it. All helps vein function and blood flow. I'm trialing some other things right now - but, don't have it figured out completely yet. I thought I did and then it started over activating my sympathetic system and I went into over drive. You can look back on that post and see what I was using. Still using those things - but, NOT the vincopetine product and with the other things in lesser amounts and some of them not every day. Hoping to get it figured out and have the benefits be more consistant.

I hate BEETS!!!!!!!! That won't be something I'll try. LOL

[POTLUCK]

The beetroot juice tastes awful, I will admit. I wrote an intro post so I do not take up Jangles topic here chatting. I am interested on anything on Angiotensin 2 and also nitric oxide. Mom always said not eating those beets and spinach would catch up to me. ( I figure the brussel sprouts, brocoli and asparagus will probably turn out to be high in nitrates too. )

[issie]

Just so you know - you can do a search of the forum for whatever you're interested in and you can read for days. LOL

[anaphylaxing]

Interesting so glad everyone's thinking about it. I'd be worried about Spironolactone's diuretic effect in already often hypovolemic patients.

[POTLUCK]

anaphylaxing- I am wondering if Losartan has a diuretic effect by blocking angiotensin, and that concerns me. I really just chose it and Vit C as Dr Stewart was using them on "low flow" patients. The cardio was OK with it but really did not sound like he had much experience with it, and only a small amount of experience with Hyperadrenergic POTS. It's just try something and "potluck."

[bellgirl]

I've been on Losartan for about 10 years now; I'm up to 100mg. even with a diuretic, hydrochlorothiazide 12.5mg. and was just recently put on a beta blocker, Bystolic, and it has works well for me. I was just diagnosed with dysautonomia last year. I think I am low flow, POTS,too; I was hypertensive since my early 40's without this diagnosis, and my father had a medullary sponge kidney, which is hereditary, which I think is what caused his hypertension, as well. He died of a massive stroke almost 13 years ago. I have never had an IVP, and I never had my angiotension level taken before being on meds, but I seem to be able to get enough fluids, but as you know we are all chronically dehydrated, anyway. I was third spacing fluid into my ankles and feet, so the fluid wasn't in the right place to begin with. I think the Losartan just increases the circulation in the kidney, being an angiotension receptor antagonist, so it works more efficiently; because I used to be on it without the diuretic, too, and noticed an increase in urine about an hour after taking it. Welcome POTLUCK...love your name, btw Joy, Kim

[POTLUCK]

Kim,

Thank you for the welcome, and I appreciate the comment about the name "POTluck" also. Bystolic is an interesting Beta blocker in that it is also suppesed to potentiate nitric oxide. Are there many other people on Dinet taking Losartan?

[issie]

Kim,

Thank you for the welcome, and I appreciate the comment about the name "POTluck" also. Bystolic is an interesting Beta blocker in that it is also suppesed to potentiate nitric oxide. Are there many other people on Dinet taking Losartan?

To my knowledge only one other - the person who is on the forum is the mother to the boy that takes it. Her alias is Lenna.

[klgpdx]

Okay, I couldn't read all four pages of responses but I need to put this out there...

Sprionolactone is a diuretic so can be VERY bad for POTS patients. The only time I every completely fainted (stood up and then immediately hit the ground and may even have had a seizure) was because I was on spironolactone in the middle of a hit wave. Between the two, I couldn't do enough to stay hydrated.

HOWEVER, all of the reasoning behind why I was on the drug made sense, especially when I correlated it to POTS, including what you mentioned. It is just that for me, and I would get many other POTS patients, the diuretic effect counters everything else we need to do to be healthy.

In regards to Vitamin D, mine were also low when I was diagnosed. I also live in Portland though... so it's expected. But every doctor I go to reiterates the importance of taking Vitamin D for nearly every disease out there. My nurse practioner ever said that if you have optimal levels of Vitamin D you should never get sick. And if you do get sick, go in for a Vitamin D IV.

[klgpdx]

Oh I also wanted to say something in regards to your theory about POTS possibly an autoimmune connective tissue disorder. Personally, this is my theory. I think that is why my chiropractor has helped me so much... He's not your typical chiro. He starts with a one hour deep fascia massage and then does adjustments.