Author Topic: Infliximab cured me(?)  (Read 4282 times)

jeppi

  • Newbie
  • *
  • Posts: 2
Infliximab cured me(?)
« on: November 15, 2021, 04:11:47 PM »
Hi!
Started Infliximab infusions for Colitis Ulcerosa couple of weeks ago.
Big help for CU, but as positive side effect it cured my quite severe pois too. I used to suffer nearly 2 weeks after ejaculation, tiredness and brain fog before this.
Now I can just enjoy sex and feel good after it 😂
Hope, this side effect lasts, and it?s not just placebo ;)

Quantum

  • Administrator
  • Hero Member
  • *****
  • Posts: 1798
Re: Infliximab cured me(?)
« Reply #1 on: November 15, 2021, 10:51:00 PM »
Keep us updated in the coming months!
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

hosien2008

  • MM group
  • Full Member
  • ***
  • Posts: 120
Re: Infliximab cured me(?)
« Reply #2 on: November 16, 2021, 12:50:53 PM »
Hi
I asked the intestinal doctor about this medicine tonight, and he said that this medicine is only in the hospital and under the supervision of a doctor, and special care must be taken before and after it, and in general it is a very heavy and dangerous medicine.

BuckarooBanzai88

  • Jr. Member
  • **
  • Posts: 54
Re: Infliximab cured me(?)
« Reply #3 on: November 18, 2021, 10:53:26 PM »
You are the first person I've ever read about being able to try a biologic and having that help with POIS.  Thanks for sharing your story!  It's something I've wondered about for years now, and can't get prescribed.

Quantum

  • Administrator
  • Hero Member
  • *****
  • Posts: 1798
Re: Infliximab cured me(?)
« Reply #4 on: November 19, 2021, 09:23:26 AM »
Hi
I asked the intestinal doctor about this medicine tonight, and he said that this medicine is only in the hospital and under the supervision of a doctor, and special care must be taken before and after it, and in general it is a very heavy and dangerous medicine.
All that this doctor told you is true. 

In order to have it prescribed, you have to have one of the exact indications it can be prescribed for ( in the case of the original poster, ulcerative colitis ), AND, you have to have tried all the usual first-line treatments ( in this case, 5-aminosalicylates, azathioprine, mercaptopurines,...)  and the results were not good enough.  Biologics are a last resort because they have the potential for very severe side effects, they are very expensive, both for the cost of the medication itself, and the management of it ( they are IV drugs, so hospital setting, nurses, and blood tests, before and after, close monitoring if you have infection signs, even a common cold, and so on....).   

There is no chance at all that any doctor accepts to prescribe this for a rare syndrome of unknown origin like POIS. It could be a career-ending prescription for this doctor.  So, it is not surprising at all that BuckarooBanzai cannot have it prescribed for him.

One day, when some tests will be available to evaluate the different types of POIS, and that some POIS cases would be clearly identified as of auto-immune origin, and that some specific markers will be known that could predict a positive response to immune suppressive therapy, then, maybe, there will be a POIS study made that will try some immune system suppressors for those who have the specific markers for it.  But I guess that the more usual immune suppressors treatments would be tried first, I think, like methotrexate, or azathioprine, or else.  It would be very surprising ( and controversial) that a researcher would start a trial with a "last resort" biological drug without having tried anything else before it.

I am glad for jeppi that he has unexpected relief for his POIS while treating his ulcerative colitis.  This would be an interesting piece of information for future POIS study, but will not lead to any short-term progress because medical research proceeds with extreme caution.   
« Last Edit: November 19, 2021, 09:54:17 AM by Quantum »
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

daniel9

  • Newbie
  • *
  • Posts: 1
Re: Infliximab cured me(?)
« Reply #5 on: January 13, 2022, 01:54:43 AM »
Hi!
Started Infliximab infusions for Colitis Ulcerosa couple of weeks ago.
Big help for CU, but as positive side effect it cured my quite severe pois too. I used to suffer nearly 2 weeks after ejaculation, tiredness and brain fog before this.
Now I can just enjoy sex and feel good after it 😂
Hope, this side effect lasts, and it?s not just placebo ;)

Hi jeppi,

how are you doing? I'm thinking about starting infliximab too

kingfisher

  • Newbie
  • *
  • Posts: 29
Re: Infliximab cured me(?)
« Reply #6 on: January 26, 2022, 02:13:40 PM »
Infliximab suppresses pro-inflammatory cytokines like TNF alpha and reduces NF-kappaB activity.

Your case clearly shows that the immune system is involved in both UC and POIS. Not a surprise though. Some of the key discovery work by folks in this forum like Quantum and Nanna1 have based their POIS prevention ideas on anti-inflammatory strategies.

But if you come off Infliximab, chances are that  your POIS symptoms will return.
« Last Edit: January 26, 2022, 05:53:22 PM by kingfisher »

Hopeoneday

  • Hero Member
  • *****
  • Posts: 958
Re: Infliximab cured me(?)
« Reply #7 on: January 26, 2022, 02:55:01 PM »
Hi Kingfisher, what key discoveries? Is he discover something new?
I,am missing something here, can you draw a link?
« Last Edit: January 26, 2022, 03:08:40 PM by Hopeoneday »
Dr-pois.

Copperred

  • Newbie
  • *
  • Posts: 4
Re: Infliximab cured me(?)
« Reply #8 on: March 05, 2022, 02:26:47 AM »
Curious on update from Jeppi......Jeppi...how are you....

jeppi

  • Newbie
  • *
  • Posts: 2
Re: Infliximab cured me(?)
« Reply #9 on: February 20, 2023, 08:23:38 AM »
Hi, it?s more than one year ago, since started infliximab. It seems, that it gives best help about 4 weeks after infusion. After that, still helps for remaining 4 weeks (before next infusion) POIS symptoms lasts shorter;only 1-3 days.
I get infusion every 2 moths.
Only side effect I have is a bit dry skin.

Quantum

  • Administrator
  • Hero Member
  • *****
  • Posts: 1798
Re: Infliximab cured me(?)
« Reply #10 on: February 21, 2023, 10:55:35 PM »
Hi, it?s more than one year ago, since started infliximab. It seems, that it gives best help about 4 weeks after infusion. After that, still helps for remaining 4 weeks (before next infusion) POIS symptoms lasts shorter;only 1-3 days.
I get infusion every 2 moths.
Only side effect I have is a bit dry skin.
Thank you for this update, Jeppi.
Do you mean that in the 4 weeks following your infusion, you have no POIS at all, and 1-3 days of POIS for the last 4 weeks before the next infusion?


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