A1 agonists to treat CFS/ME + OI? (A1 adrenergic autoantibodies / CellTrend)

[Jesse2233]

@Jesse2233 Does phenylephrine give you tachycardia?

Don't think so, it's supposed to have the opposite effect by raising blood pressure

 

[Hip]

What would be the best location to apply it transdermally?

Anywhere really, but I usually use the top of the thigh area for transdermal application, just because this is an easy area to apply powder to when you are sitting down.

 

[Jesse2233]

Had a decent day today on the phenylephrine. Was able to drive around, go to appointments, etc. Got in around 3k steps total which is above my average. But brain fog and OI remained.

Convinced a GP to prescribe midodrine so I will be trying that tomorrow.

 

[Jesse2233]

My concern with the list of meds you mentioned is that they might raise my blood pressure further.

The other concern is the effect any of the meds might have on mitochondria.

Hey Learner, I think your concern about blood pressure is valid since these are vasoconstrictors. I'm not sure about mitochondrial effect, but if you find something out about this please let me know

 

[Learner1]

Hey Learner, I think your concern about blood pressure is valid since these are vasoconstrictors. I'm not sure about mitochondrial effect, but if you find something out about this please let me know

Thanks, I will.

At the United Mitochondrial Disease Conference, I learned 75% of pharmaceutical drugs are toxic to mitochondria, and doctors there were encouraged to think hard about possible negative consequences before prescribing anything for their patients.

As for these antibodies, it seems prudent to find something to reverse them and not just address the symptoms... (I've seen Hashis antibodies reverse with removal of food allergens.)

 

[Jenny TipsforME]

at a separate time) an OTC A1 antagonist

What are readily available A1 antagonists?

If you need an antagonist rather than an agonist, can anyone predict what effect midodrine would have on you? I'm trying midodrine again but so far it makes me worse rather than better I tend to have low blood pressure so this surprised me.

Had a decent day today on the phenylephrine.

Doctors are really adamant I can't take these decongestant drugs, usually containing pseudo-ephedrine, even when I'm very congested (because I take beta blockers).

 

[Gingergrrl]

Jenny, that wasn't understanding, too, (that all forms of pseudoephedrine can cause tachy and not to take w/a beta blocker and bad for POTS).

Have you heard that before, Jesse, or is the med you took not one that contains Epi and I am confused? Thanks!

 

[Jesse2233]

What are readily available A1 antagonists?

Hey Jenny,

Here's a list of A1 antagonists:

• Doxazosin (Cardura) - Hypertension and benign prostatic hyperplasia (BPH)
• Silodosin (Rapaflo) - Benign prostatic hyperplasia
• Prazosin (Minipress) - Hypertension and nightmares
• Tamsulosin (Flomax) - Benign prostatic hyperplasia
• Alfuzosin (Uroxatral) - Benign prostatic hyperplasia

Jenny, that wasn't understanding, too, (that all forms of pseudoephedrine can cause tachy and not to take w/a beta blocker and bad for POTS).

Have you heard that before, Jesse, or is the med you took not one that contains Epi and I am confused? Thanks!

I'm not sure to be honest, but I'd trust what your doctor says / your experience before listening to me

 

[Jesse2233]

Took 5mg of Midodrine today and felt a strong positive effect.

Another 3.2k steps, 50% less brain fog and after standing 15 min, these were my vitals.

Maybe there's something to this CellTrend stuff

 

[Gingergrrl]

I'm not sure to be honest, but I'd trust what your doctor says / your experience before listening to me

I realized what I wrote in post last night might not have even made sense. I was trying to figure out if the med that you tried (phenylephrine) is like Sudafed or Pseudoephedrine or something totally different? If similar, than I know it is something that I am supposed to avoid b/c it triggers tachy, insomnia and agitation for me. Whereas, Midodrine makes me feel very calm and lowers my HR.

Took 5mg of Midodrine today and felt a strong positive effect.

That is great news!

these were my vitals.

Is your HR always so low (47) or was that from the Midodrine? I have the exact same Omron BP machine as you except I have never seen my HR go that go (usually in the 60's at rest w/Atenolol) and I've never had my systolic BP go up to 127.

Maybe there's something to this CellTrend stuff

I absolutely believe there is and they are on to something. I am baffled though why they are able to test for autoantibodies in Germany that cannot be tested in the U.S.!

 

[Jesse2233]

realized what I wrote in post last night might not have even made sense. I was trying to figure out if the med that you tried (phenylephrine) is like Sudafed or Pseudoephedrine or something totally different? If similar, than I know it is something that I am supposed to avoid b/c it triggers tachy, insomnia and agitation for me. Whereas, Midodrine makes me feel very calm and lowers my HR.

Yes phenylephrine is the active ingredient in OTC Sudafed-PE which I took yesterday to little effect. It's the newer formulation of Sudafed. The old one had pseudophedrine which is another A1 agonist. It's still on the market but you have to sign a form to get it because people use it as a precursor to make methanphedamine (see Breaking Bad).

Very interesting that phenylephrine gives you the bad side effects whereas midodrine helps!

That is great news!

Yea! Hoping I don't build resistance / crash. I'm going to try a dose of 7.5mg tomorrow

Is your HR always so low (47) or was that from the Midodrine? I have the exact same Omron BP machine as you except I have never seen my HR go that go (usually in the 60's at rest w/Atenolol) and I've never had my systolic BP go up to 127.

My rest HR is around 45 (it's always been that) but since illness onset goes up to around 80 on standing.

I absolutely believe there is and they are on to something. I am baffled though why they are able to test for autoantibodies in Germany that cannot be tested in the U.S.!

Yes I agree. I think it should be standard practice to give everyone the CellTrend POTS/CFS autoantibody panel at illness onset and if the ABs show up immeadiately treat with plasmapheresis, IVIG, and the appropriate receptor agonists

 

[Gingergrrl]

Yes phenylephrine is the active ingredient in OTC Sudafed-PE which I took yesterday to little effect.

Thanks for clarifying.

Very interesting that phenylephrine gives you the bad side effects whereas midodrine helps!

Yes and they are totally different for me and definitely have a different mechanism of action.

I'm going to try a dose of 7.5mg tomorrow

Keep me posted what happens. I have tried 4-5 different doses of Midodrine since 2014 (lowest was 1.25 mg and highest was 10 mg) and at present, I take 2.5 mg 2-3x per day.

My rest HR is around 45 (it's always been that) but since illness onset goes up to around 80 on standing.

Wow, you have a very low HR. Were you an athlete prior to getting sick? The raise in HR upon standing would definitely qualify as POTS but the total HR of 80 is still quite low. Did you ever have episodes of your HR going into the 160's or higher? I do not have them any more but did for several years and they were torture.

Yes I agree. I think it should be standard practice to give everyone the CellTrend POTS/CFS autoantibody panel at illness onset and if the ABs show up immeadiately treat with plasmapheresis, IVIG, and the appropriate receptor agonists

I think it is very unlikely that any U.S. doctors are going to do plasmapheresis. I was able to get IVIG and Ritux approved but could not find a single doctor who would even consider allowing me to try plasmapheresis.

 

[Jesse2233]

Keep me posted what happens. I have tried 4-5 different doses of Midodrine since 2014 (lowest was 1.25 mg and highest was 10 mg) and at present, I take 2.5 mg 2-3x per day.

Will do. What happened when you went to 10mg?

Wow, you have a very low HR. Were you an athlete prior to getting sick? The raise in HR upon standing would definitely qualify as POTS but the total HR of 80 is still quite low. Did you ever have episodes of your HR going into the 160's or higher? I do not have them any more but did for several years and they were torture.

Wasn't an athlete per se but I did a lot of yoga / meditation and went to the gym. But even during periods where I was relatively sedentary my HR was always low, not sure why as my parents have always had much higher resting HR

I know 80 is relatively low but for me I get light headedness, brain fog, dizziness, leg weakness, fatigue and anxiety with the increase. I'm convinced that there's more to the symptomatic affect of OI than can be correlated with HR / BP.

In the first day of onset and weeks after my HR went up as high as 120 which was truly a nightmare but fortunately also led me to quickly to figure out what I had in part

I think it is very unlikely that any U.S. doctors are going to do plasmapheresis. I was able to get IVIG and Ritux approved but could not find a single doctor who would even consider allowing me to try plasmapheresis.

Yea it's too bad. I think plasmapheresis is probably the safest autoimmune treatment when it comes to the "big guns" and the quickest acting

 

[Jenny TipsforME]

OK so these are two of my Omron readings today before and 1hr after taking 5mg midodrine



image album hosting

 

[Jenny TipsforME]

I was sitting in the same position both times. So midodrine doesn't seem to be raising my blood pressure :thumbdown:

Even at 2.5mg I feel like I get side effects (nocebo?).

BTW the 'before' is relatively high for me, it's not particularly unusual for me to be 80s or 90s over 50s or 60s.

 

[Gingergrrl]

What happened when you went to 10mg?

Sorry I totally missed this question last night! I only tried the 10 mg dose very briefly and if I remember correctly, it gave me a headache and I lowered it back down. I had paper notebooks with great detail but we lost everything prior to mid-2015 to mold so I no longer have them to check.

Wasn't an athlete per se but I did a lot of yoga / meditation and went to the gym. But even during periods where I was relatively sedentary my HR was always low, not sure why as my parents have always had much higher resting HR

That is interesting and I was just curious. I never really checked my HR prior to getting POTS in Jan 2013 but I used to go to gym and work out with a trainer and never had a problem. I became sedentary after neurotoxic reaction to Levaquin in 2010 but still worked full-time did not develop POTS until after mono (2012) and second virus/moving into rental with mold.

I know 80 is relatively low but for me I get light headedness, brain fog, dizziness, leg weakness, fatigue and anxiety with the increase. I'm convinced that there's more to the symptomatic affect of OI than can be correlated with HR / BP.

I did not mean at all that you do not have horrible OI symptoms with HR at 80 and hope it did not sound that way! My HR could be in the 60's from Atenolol but it did not change my ability to stand and walk more than 30-60 seconds prior to IVIG.

In the first day of onset and weeks after my HR went up as high as 120 which was truly a nightmare but fortunately also led me to quickly to figure out what I had in part

I am so glad you figured it out so early. My HR was going into the 160's and 170's multiple times per day (and waking me up at night with it this high) but I did not have a clue what was going on. The first cardio I saw was a moron and said, "It's nothing to be concerned about" and that "She could get her HR into the 160's in her spin class". I said yes but I am SLEEPING or just standing up from a chair when it happens. It truly was not until 2016 with the Cell Trend tests that my OMI doctor said that I had "Autoimmune POTS" and everything made more sense to me.

Yea it's too bad. I think plasmapheresis is probably the safest autoimmune treatment when it comes to the "big guns" and the quickest acting

Neither of my main doctors had ever prescribed plasmapheresis and were not comfortable with it for me (which I totally understand given that I was still having pretty bad MCAS reactions at that time). My MCAS doctor also felt that plasmapheresis had a higher chance of transmitting hepatitis or infections compared to IVIG. I have no statistics on this but this was his strong opinion.

I was sitting in the same position both times. So midodrine doesn't seem to be raising my blood pressure :thumbdown: Even at 2.5mg I feel like I get side effects (nocebo?).
BTW the 'before' is relatively high for me, it's not particularly unusual for me to be 80s or 90s over 50s or 60s.

Jenny, do you experience other benefits with Midodrine even when it does not raise your BP on an arm-cuff? There were times that I took Midodrine and my BP actually went DOWN vs. UP and it frequently would stay the same. And yet, I felt better when I took it, even though my BP (at that time) was around 80/50 every day.

A few docs felt that it was b/c I was not getting adequate blood to my heart and lungs when I stood up and that Midodrine was raising my "Core BP" through preferential perfusion even when not raising it on an arm cuff. I tried to research this idea, b/c I think it is correct in my case, but really never found any info.

So if you are benefiting, even if not raising your BP, I do not believe that it is placebo affect. And my BP never got above the 90's/60's until I began IVIG. The combo of IVIG and Midodrine seem to work better than Midodrine alone and now my BP is around 100/70 every day and I can feel the improvement.

 

[Countrygirl]

Hey Jenny,

Here's a list of A1 antagonists:

• Doxazosin (Cardura) - Hypertension and benign prostatic hyperplasia (BPH)
• Silodosin (Rapaflo) - Benign prostatic hyperplasia
• Prazosin (Minipress) - Hypertension and nightmares
• Tamsulosin (Flomax) - Benign prostatic hyperplasia
• Alfuzosin (Uroxatral) - Benign prostatic hyperplasia

I haven't yet read the thread in detail, but thought I must chime in with a warning when I saw doxazosin listed above.

I do have a tendency to react badly to medications: statins (3 month relapse); amitriptyline and zolpidem in particular. BUT doxazosin provoked really serious side effects. After a day or so, the effects were so pronounced and unpleasant that I divided the dose in half..........................I still couldn't tolerate it. I continued for a few days and then experienced very severe chest pain which spread to my arm, jaw and down my back. I felt as though my body was being crushed. To cut the story short I had what was diagnosed the following day as 'crescendo angina'......very unpleasant indeed. I decided not to call an ambulance however as I had been taken into hospital only four weeks before with malignant hypertension and was told by the staff that they disliked anyone with a diagnosed with ME and that to expect to be treated 'unkindly' by them once they realised that someone with such a diagnosis was on the ward. I decided never to return and so took a quadruple dose of sleeping tablets to knock myself out as I thought there was a realistic chance I would not survive, but nothing was worth returning to hospital to be badly treated on account of the staffs hostility to anyone with a diagnosis of ME.

The effect of taking doxazosin was so severe that it seemed to targeting 'something'.......which must be the alpha adrenergic receptors given its mode of action............that is malfunctioning in this illness.

 

[Jesse2233]

The effect of taking doxazosin was so severe that it seemed to targeting 'something'.......which must be the alpha adrenergic receptors given its mode of action............that is malfunctioning in this illness.

Horrible! So sorry you had that experience with doxazosin not to mention the hospital. I'm glad you survived and I can't believe they would say that to you!

Have you ever benefited from an alpha agonist?

 

[Countrygirl]

Horrible! So sorry you had that experience with doxazosin not to mention the hospital. I'm glad you survived and I can't believe they would say that to you!

Have you ever benefited from an alpha agonist?

I have never been prescribed one, so I have no idea whether it would bring improvements,

 

[pibee]

1) Anti a-1 adrenergic: 22.6 (top of range 7.0)
2) Anti a-2 adrenergic: Negative
3) Anti B-1 adrenergic: 30.4 (top of range 15.0)
4) Anti B-2 adrenergic: 37.5 (top of range 14.0)

5) Anti Muscarinic/Cholinergic R1: 13.0 (top of range 9.0)
6) Anti Muscarinic/Cholinergic R2: 9.6 (top of range 9.0- so this one very slight)
7) Anti Muscarinic/Cholinergic R3: 24.1 (top of range 10.0)
8) Anti Muscarinic/Cholinergic R4: 27.0 (top of range 7.0)
9) Anti Muscarinic/Cholinergic R5: Negative

.

My results: (I dont think i'll get any immune treatment for this in Croatia ). I soon go to hospital, there is still considerable danger I'll receive mental diagnosis.

1) Anti a-1 adrenergic: 36 (top of range 7.0)
2) Anti a-2 adrenergic: 23.6 (top of range 15.0)
3) Anti B-1 adrenergic: Negative - 12.8 (top of range 15.0)
4) Anti B-2 adrenergic: 37.7 (top of range 14.0)

5) Anti Muscarinic/Cholinergic R1: 14.0 (top of range 9.0)
6) Anti Muscarinic/Cholinergic R2: 22.0 (top of range 9.0)
7) Anti Muscarinic/Cholinergic R3: 11.7 (top of range 10.0)
8) Anti Muscarinic/Cholinergic R4: 48.4 (top of range 7.0)
9) Anti Muscarinic/Cholinergic R5: 18.3 (top of range 14.2)