Prednisone / Steroids

[BuckarooBanzai88]

I just wanted to post my experience with prednisone/steroids.  I've babbled extensively about this in other posts, but with my limited diet and vitamin D supplementation, I have my symptoms down to 2.5 days.

When I take prednisone, I have no symptoms at all.  If I have a wet dream, so long as I take the prednisone right away, I still have no symptoms.  It just knocks them out.

I take 5mg.  If I have two wet dreams, one night after another, I'll take 2.5mg the second night to try to keep from taking too much.  I average ~5 doses of prednisone a month, sometimes more.

The problem with prednisone for me is that it interferes with my vitamin D levels and vitamin D has been instrumental in reducing my symptom severity and duration.

Right now I'm doing a monthly vitamin D test to make sure my levels don't dip below 60ng/ml which is close to the inflection point beyond which I being having my symptoms increase in severity.

I just wanted to share how much I take, and how often I take it in case anyone else is thinking of trying.  It's been a real life changer for me.  I've been told by two doctors now that at this dose schedule and dose, I should be fine continuing treatment in this manner. 

I'm trying very hard now to meet with a rheumatologist about taking Humira.  I'll post an update if I can.  It's unlikely insurance will cover it, so I'd be paying out of pocket to trial the drug.  Very expensive.  IF i can find someone who will prescribe it, and IF it works, then I'll have to find a more permanent solution.  I think it's around 5k per dose.

[Journey]

How fast it disappear? U feel transition to 0POIS? POIS caused by MCAS/autoimmune/inflammation?

[drop247]

How much Vitamin D do you have to take to keep your monthly test levels above 60?

[BuckarooBanzai88]

I take 10,000 IU a day to keep about 60ng/ml.  This is a new dosage for me thouhg so I'm not certain where that will land me.  I had to increase my dose from 8000 IU because my levels were going down.  Something else that's kind of specific to me, I'm a game developer so I spend most of my time in doors in the Pacific Northwest where there's already not much sunlight to begin with.


The reason I take Prednisone rather than Dexamethasone, for instance, is Prednisone takes effect more quickly and lasts a shorter amount of time.  For me, symptoms come on slowly over the course of several hours.  If I take Prednisone right after a wet dream (preferably before ejaculation whenever possible), I don't experience any symptoms at a 5mg dose.

I've experimented with 2.5mg, and that doesn't completely wipe away the symptoms, but it does help dramatically more than NSAIDs ever did. 

[BuckarooBanzai88]

Also, quick Humira update:

The Rheumatologist refused to prescribe it to me saying the prednisone dose/schedule is a much safer option. 

It's unfortunate because I have an extremely limited diet that could be helped by a drug like Prednisone if I could take it all the time like I could have Humira.  But getting rid of my POIS symptoms is a big first step.  Maybe I can find a way to add in foods.

[Monte]

From my topic:

Today I have discovered new thing! I had no POIS since 2 months and today first time in my life I put on a glove and looked for a prostate. I touched, but didn't massage too much. I did it delicately, but after that I felt a slight burning sensation around my penis (last months I had no sympoms of prostatis, but of course touching prostate can make little irritate, so that`s normal) . But know the most important thing - few hours later I felt 30% POIS (but only brainfog, irritation and intellectual decline, no body pain). I think touching my prostate cased moving fluid in that area (but no leakage to the outside) and then has arisen inflammation (without pain). Maybe many of you have bacteria inflammation  and don`t know about it. I have taken 2 pills of drotaverine (probably is not as good as Prednisone but it`s the only thing I have) and now my brainfog is much smaller. I think I made an mistake touching prostate not being in POIS. I should make it (better drainage) only when I`m after sex (the prostate is anyway irritated so after sex probably  I'm not losing anything by massaging prostate). Anyway, good to know that there such a strange mechanism (maybe not the only one, but definitely contributing) causing my POIS. Now all make sense. Maybe that`s because people have good result after using Prednisone (reducing inflammation) and milnacipran (affecting the effective removal of secretions outside), even magnesium (making good perineal muscles action).

[Quantum]

I take 10,000 IU a day to keep about 60ng/ml.  This is a new dosage for me thouhg so I'm not certain where that will land me.  I had to increase my dose from 8000 IU because my levels were going down.  Something else that's kind of specific to me, I'm a game developer so I spend most of my time in doors in the Pacific Northwest where there's already not much sunlight to begin with.


The reason I take Prednisone rather than Dexamethasone, for instance, is Prednisone takes effect more quickly and lasts a shorter amount of time.  For me, symptoms come on slowly over the course of several hours.  If I take Prednisone right after a wet dream (preferably before ejaculation whenever possible), I don't experience any symptoms at a 5mg dose.

I've experimented with 2.5mg, and that doesn't completely wipe away the symptoms, but it does help dramatically more than NSAIDs ever did.

Interesting, BB88,

Do you have consistent success with 5mg of prednisone ?  Is it working for over 2 to 3 months now ?

[BuckarooBanzai88]

Yes, for me Prednisone, and before that Dexamethasone has consistently relieved symptoms.  I switched to Prednisone based on the shorter half-life and short peak plasma time.

I was a little sheepish about using it, but after having two separate doctors tell me that my dosing schedule was alright, I decided to not worry about it.  I'll continue monitoring my vitamin D levels.  Everything gets worse when they drop.

I've been experimenting for 5-6 months on and off.

[BuckarooBanzai88]

Just a little update on my Prednisone experiment.

Dose
I've found that anything less than 5mg isn't quite enough.

Remaining Symptoms
When I take Prednisone, I still have brain fog / memory trouble.  But I don't have:
Anxiety
Depression
Lack of Coordination
Irritability
Headache

I'm contemplating taking Adderall to see if that helps eliminate the brain fog / memory issues as well as the fatigue.

Thoughts
So if I'm taking Prednisone, we can either attribute the resolution of my symptoms to a lack of inflammation or an alteration of my neurotransmitter balance or likely a combination of both.

Maybe the neurotransmitter imbalance causes inflammation.  I doubt that because I have POIS symptoms whenever I eat gluten or any of the other foods I have trouble with.  I don't think gluten can cause abrupt changes in neurotransmitter balance like sex can.  But I don't really know.  I'm just thinking out loud here.

So if these symptoms are all resolved by tamping down on inflammation, then the remaining symptoms may not be caused by inflammation.  A lack of focus / memory and fatigue could both be caused by a dopamine imbalance.  I've also found that I have RLS on nights after POIS.  That can also be caused by dopamine imbalance.

Anyway, I was thinking of trying Adderall for focus/fatigue/memory.

Concerns
There are many studies suggesting that steroid use is linked to hippocampus damage / declarative memory deterioration.  Because of that I'm a little leery about taking Prednisone long term.  In fact, I intend to try Diclofenac next to see if I can substitute it out.  So I'll be trying Diclofenac and Adderall to see how that works out.

I have concerns about taking NSAIDs because I have so many food sensitivities and NSAIDs can cause faults in intestinal permeability. 

I do feel as though my back's up against a wall with respect to my mind slowly deteriorating.  On the one hand, POIS really messes with my mental faculties in a gross and profound way (of course I don't need to tell you this), and on the other, the only treatment that seems to relieve most of my symptoms can also cause brain damage over time (regardless of dose). 

Contemplation
I think what would most quickly improve my quality of life would be if I could eliminate wet dreams.  I'm a programmer so I've contemplated buying a biometric device to monitor various biomarkers while I sleep and sound an alarm if I'm about to have an orgasm.  I lack the medical background to know which biomarkers I could monitor quickly enough to respond.

I've contemplated taking SSRIs which I took long ago before I knew what my problem was.  They all caused substantial disruptions in my memory, but that was before I knew about POIS and before I knew about my absurd laundry list of food sensitivities.  Perhaps now with my monastic lifestyle, I would tolerate the drugs better.  At the end of the day, I don't actually have depression/anxiety in my natural state (which is altogether fleeting).  The benefit of taking SSRI for me, as I see it, would be that they would curtail my sex drive (sadly a good thing, but that's reality), potentially reduce wet dreams (very good), potentially help with my food sensitivities (very good).  SSRIs are sometimes prescribed for IBS and so could have a positive effect on food tolerance.  Of course then I've also read that SSRIs can cause bone damage over time...  There's no winning with these medications!

Anyway, that's where my head's at now.  I share all of this in case any of it resonates with anyone else trying similar experiments, and experiencing similar symptoms.  I'm afraid until we have more substantial research going, the best we can do is try different things to see if they help.  There's certainly no cure, but maybe some balance of supplements, diet modification, pharmaceutical drugs could relieve symptoms.

[demografx]

I think what would most quickly improve my quality of life would be if I could eliminate wet dreams.

BB88, they were the single most horrible bane of my entire POIS existence! I finally eliminated them but only through...aging! (I’m retired now).

[BuckarooBanzai88]

Oof, it's good to know that

I'll be meeting with a urologist in the coming months.  I think I may ask about which biomarkers change in the lead up to an orgasm.  If there are distinct, measurable changes, then I may very well end up building that device I mentioned.  That would be preferable to drugs in my opinion.

If I do that, and if it's successful, I'll be sure to share the device, code, and instructions.

[demografx]

BB88, I love your sharing spirit!

[BuckarooBanzai88]

One more quick update.  In attempting to follow the AIP diet more strictly, I've removed all seeds/grains from my diet (wild rice, flax).

Now I can get by with just 2.5mg of prednisone.

If I take it after orgasm, I still have mild brain fog and irritability.  I believe it lasts around 8 hours.
If I take it before orgasm, I don't have symptoms at all.  Must be preempting some sort of autoimmune reaction.

Anyway, just wanted to let folks know if case they're thinking of trying.

I did end up programming a device to take my vitals while I sleep, but during a wet dream, I didn't see any obvious variations in my various vital signs that I could use to detect and stop a wet dream from happening.  I might record a few more nights just to make sure.

[Journey]

One more quick update.  In attempting to follow the AIP diet more strictly, I've removed all seeds/grains from my diet (wild rice, flax).

Now I can get by with just 2.5mg of prednisone.

If I take it after orgasm, I still have mild brain fog and irritability.  I believe it lasts around 8 hours.
If I take it before orgasm, I don't have symptoms at all.  Must be preempting some sort of autoimmune reaction.

Anyway, just wanted to let folks know if case they're thinking of trying.

I did end up programming a device to take my vitals while I sleep, but during a wet dream, I didn't see any obvious variations in my various vital signs that I could use to detect and stop a wet dream from happening.  I might record a few more nights just to make sure.

Does your heartbeat change during WD or maybe nerve/muscle impulses you could measure those?

[BuckarooBanzai88]

I was only measuring heart rate, respiration rate, and skin temperature.  The only change I noticed was a decrease in my respiration rate prior to orgasm, but I really do need to repeat this several times.  I only have one night's data.

[Muon]

The only change I noticed was a decrease in my respiration rate prior to orgasm, but I really do need to repeat this several times.  I only have one night's data.

Poll about RR: https://poiscenter.com/forums/index.php?topic=3561.0

[BuckarooBanzai88]

I woke up recently unable to hear bass in my left ear.  I quickly went to the doctor and was diagnosed with SSHL.   It could be Autoimmune Inner Ear Disease, or something else, but either way the prescribed treatment is a high dose course of corticosteroids.

I just wanted to report that on a high dose of prednisone, POIS simply doesn't happen.  I usually take a relatively low dose (5mg) on days when I have wet dreams, and that limits symptoms substantially.  Taking 60mg makes it so I just don't have POIS symptoms at all.

I've been unable to get a doctor to prescribe biologics like Humira to me since POIS isn't recognized as a disease that could benefit from the application of Humira.  But AIED is a disease that people have been prescribed TNFa biologics for.  If i'm able to get the prescription, I'll report on whether it helps with POIS or not.  Just thought I'd share about prednisone eliminating all symptoms at the unsustainably high dose of 60mg.

[Andre2505]

Hello, I also benefited by taking 5 mg 1 hour before ejaculation. You're there, what happened to you? Have you improved your condition?
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