Author Topic: Prednisone / Steroids  (Read 148 times)

BuckarooBanzai88

  • Newbie
  • *
  • Posts: 33
Prednisone / Steroids
« on: September 09, 2020, 04:35:43 PM »
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

  • Full Member
  • ***
  • Posts: 180
  • INTP, 19 y.o. aware of POIS since 2019
Re: Prednisone / Steroids
« Reply #1 on: September 10, 2020, 04:13:58 AM »
How fast it disappear? U feel transition to 0POIS? POIS caused by MCAS/autoimmune/inflammation?
INTP, 19 y.o. aware of POIS since 2019 when realized by abstaining that O/WD gives POIS, likely had it since puberty, fatigue, brainfog, clumsier, slower thinking/processing, voice volume goes down, sometimes harder to look in eyes, lower stamina/strength

drop247

  • Full Member
  • ***
  • Posts: 156
Re: Prednisone / Steroids
« Reply #2 on: September 10, 2020, 06:19:14 AM »
How much Vitamin D do you have to take to keep your monthly test levels above 60?

BuckarooBanzai88

  • Newbie
  • *
  • Posts: 33
Re: Prednisone / Steroids
« Reply #3 on: September 12, 2020, 02:50:44 AM »
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

  • Newbie
  • *
  • Posts: 33
Re: Prednisone / Steroids
« Reply #4 on: September 12, 2020, 02:53:39 AM »
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

  • Newbie
  • *
  • Posts: 15
Re: Prednisone / Steroids
« Reply #5 on: September 12, 2020, 02:44:48 PM »
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

  • Administrator
  • Hero Member
  • *****
  • Posts: 1269
Re: Prednisone / Steroids
« Reply #6 on: September 12, 2020, 03:18:21 PM »
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 ?

You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

BuckarooBanzai88

  • Newbie
  • *
  • Posts: 33
Re: Prednisone / Steroids
« Reply #7 on: September 13, 2020, 06:55:28 PM »
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.