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Author Topic: tacrolimus/pimecrolimus and HIV, anyone any experience.  (Read 1705 times)

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Offline Souledout

  • Member
  • Posts: 145
tacrolimus/pimecrolimus and HIV, anyone any experience.
« on: September 10, 2013, 05:19:19 PM »
Going to see my doc tomorrow about steroid induced rosacea, the main treatments are tacrolimus and pimecrolimus, both of which are immunosuppressants. Anyone have any experience of using them in any way?

I did use one of them for a month at Christmas and got myself a HSV outbreak but this time I'm thinking of using them with acyclovir as a prophylactic. I'll be gutted if I can't use them, my face is fuuuuucked at the moment :(
Infection sometime April-August, no noticable seroconversion symptoms
Not currently on medication
13/09/12 CD4 672 (33%) VL <40 (diagnosis date)
18/09/12 CD4 ?               VL 43
27/09/12 CD4 ?               VL 127
19/11/12 CD4 676 (38%) VL 959
03/03/13 CD4 642 (32%) VL 291
04/07/13 CD4 791 (33%) VL 26,437 (active cold sore, tooth infection)
18/07/13 ------retest------VL 3704
18/11/13 CD4 802 (36%) VL 65

Offline anniebc

  • Member
  • Posts: 5,939
  • AM member since 2003
Re: tacrolimus/pimecrolimus and HIV, anyone any experience.
« Reply #1 on: September 10, 2013, 05:43:22 PM »
Hi there

If you are using corticosteroids then this is a side effect that can happens, but the treatment (tacrolimus and pimecrolimus)is just as bad, especially for those living with HIV, I hope your Doc can come up with something a treatment other than Immunosuppressant's.

Good luck, let us know how it goes with the Doc.

Jan
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline mecch

  • Member
  • Posts: 11,726
  • red pill? or blue pill?
Re: tacrolimus/pimecrolimus and HIV, anyone any experience.
« Reply #2 on: September 10, 2013, 06:58:30 PM »
Please, why do you take steroids?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Souledout

  • Member
  • Posts: 145
Re: tacrolimus/pimecrolimus and HIV, anyone any experience.
« Reply #3 on: September 11, 2013, 06:23:38 AM »
I have been on topical steroids for years for eczema. I've now got a red face in places, I wonder for how much of that time I've been in a dependency cycle with the steroids rather than suffering from the eczema. I've cut the cycle on my body but not my face and am in need of something more than just stopping - the withdrawal causes burning, extreme itching and it all to flare up more.
Infection sometime April-August, no noticable seroconversion symptoms
Not currently on medication
13/09/12 CD4 672 (33%) VL <40 (diagnosis date)
18/09/12 CD4 ?               VL 43
27/09/12 CD4 ?               VL 127
19/11/12 CD4 676 (38%) VL 959
03/03/13 CD4 642 (32%) VL 291
04/07/13 CD4 791 (33%) VL 26,437 (active cold sore, tooth infection)
18/07/13 ------retest------VL 3704
18/11/13 CD4 802 (36%) VL 65

Offline Souledout

  • Member
  • Posts: 145
Re: tacrolimus/pimecrolimus and HIV, anyone any experience.
« Reply #4 on: September 14, 2013, 04:22:58 AM »
Just being nosey there mecch or do you have anything you can help me with? ;)
Infection sometime April-August, no noticable seroconversion symptoms
Not currently on medication
13/09/12 CD4 672 (33%) VL <40 (diagnosis date)
18/09/12 CD4 ?               VL 43
27/09/12 CD4 ?               VL 127
19/11/12 CD4 676 (38%) VL 959
03/03/13 CD4 642 (32%) VL 291
04/07/13 CD4 791 (33%) VL 26,437 (active cold sore, tooth infection)
18/07/13 ------retest------VL 3704
18/11/13 CD4 802 (36%) VL 65

Offline mecch

  • Member
  • Posts: 11,726
  • red pill? or blue pill?
Re: tacrolimus/pimecrolimus and HIV, anyone any experience.
« Reply #5 on: September 21, 2013, 03:35:00 AM »
I wasn't being nosey.  I was politely wondering why you needed steroids. You didnt say why, and if it was for bodybuilding I would have suggested gingerly that the person consider stopping the steroids.  But that is not your case.

Now, as for input for you now that we know the problem.  I have sensitive skin and had many many serious and or mysterious skin issues over the years. What I've tried to do is seek out specialist treatment. The skin seems to be a very challenging area of medicine. 

I used elidil but I was not HIV positive. It works great.

I think you should get your dermatologist speaking to your HIV doc, if they are not. Im sure there is a solution but it takes application by the docs and persistence in seeking solutions by the person with the skin problem.

(I am sorry that the only solution for you over the years was cortisone.  Its a hard bargain.  Most of the dermatologists I have seen have tried to avoid cortisone and this is dating back 30 years...  I hope you can find a work around soon.)
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Souledout

  • Member
  • Posts: 145
Re: tacrolimus/pimecrolimus and HIV, anyone any experience.
« Reply #6 on: September 22, 2013, 02:27:25 PM »
Ah ok fair enough. Steroid induced rosacea is only caused by topical steroids as far as I know.

I'm on pimecrolimus now. Last time I was on it I got eczema herpeticum and as a precaution I'm on daily acyclovir (well I put myself on after I was scared another breakout was coming on). It's all fine and the cream us working absolute wonders, I look better than I have done in aaages.

I've also quit drinking, that's helping loads but its so, so dull!
Infection sometime April-August, no noticable seroconversion symptoms
Not currently on medication
13/09/12 CD4 672 (33%) VL <40 (diagnosis date)
18/09/12 CD4 ?               VL 43
27/09/12 CD4 ?               VL 127
19/11/12 CD4 676 (38%) VL 959
03/03/13 CD4 642 (32%) VL 291
04/07/13 CD4 791 (33%) VL 26,437 (active cold sore, tooth infection)
18/07/13 ------retest------VL 3704
18/11/13 CD4 802 (36%) VL 65

Offline mecch

  • Member
  • Posts: 11,726
  • red pill? or blue pill?
Re: tacrolimus/pimecrolimus and HIV, anyone any experience.
« Reply #7 on: September 22, 2013, 04:15:13 PM »
Well that's good news.  Nothing like skin healing to feel like a human again.

Since you won't drink, maybe smoke some joints to have "interesting" altered states?  ::) :o :-*
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Souledout

  • Member
  • Posts: 145
Re: tacrolimus/pimecrolimus and HIV, anyone any experience.
« Reply #8 on: September 22, 2013, 06:03:41 PM »
Oh I was up all night on Friday night having a massive party at my house. There are definitely other things to do to alter states that don't involve drinking ;)
Infection sometime April-August, no noticable seroconversion symptoms
Not currently on medication
13/09/12 CD4 672 (33%) VL <40 (diagnosis date)
18/09/12 CD4 ?               VL 43
27/09/12 CD4 ?               VL 127
19/11/12 CD4 676 (38%) VL 959
03/03/13 CD4 642 (32%) VL 291
04/07/13 CD4 791 (33%) VL 26,437 (active cold sore, tooth infection)
18/07/13 ------retest------VL 3704
18/11/13 CD4 802 (36%) VL 65

Offline northernguy

  • Member
  • Posts: 1,347
Re: tacrolimus/pimecrolimus and HIV, anyone any experience.
« Reply #9 on: September 25, 2013, 11:30:05 PM »
I had numerous skin issues related to HIV.  My dermatologist (who specialized in HIV treatment) had no qualms prescribing Elidel.

Also, I should point out that going on HAART cleared up 99% of the skin issues.
Apr 28/06 cd4 600 vl 10,600 cd% 25
Nov 8/09 cd4 510 vl 49,5000 cd% 16
Jan 16/10 cd4 660 vl 54,309 cd% 16
Feb 17/10 Started Atripla
Mar 7/10 cd4 710 vl 1,076 cd% 21
Apr 18/10 cd4 920 vl 268 cd% 28
Jun 19/10 cd4 450 vl 60 cd% 25
Aug 15/10 cd4 680 vl 205 cd% 27
Apr 3/11 cd4 780 vl <40 cd% 30
Jul 17/11 cd4 960 vl <40 cd%33
April 15/12 cd4 1,010 vl <40 cd% 39
April 20/12 Switched to Viramune + Truvada
Aug 2/12 cd4 1040, vl <40, cd% 38
Oct 19 cd4 1,110 vl <40 cd% 41

Offline Souledout

  • Member
  • Posts: 145
Re: tacrolimus/pimecrolimus and HIV, anyone any experience.
« Reply #10 on: September 26, 2013, 03:18:24 AM »
Thanks, that seems to be the consensus with my team. It's fine to use but I've got to go down the acyclovir route to stop break outs. I'm fine with that as any breakout raises my VL dramatically. It's good your skin issues resolved, mine pre-dated HIV though :(
Infection sometime April-August, no noticable seroconversion symptoms
Not currently on medication
13/09/12 CD4 672 (33%) VL <40 (diagnosis date)
18/09/12 CD4 ?               VL 43
27/09/12 CD4 ?               VL 127
19/11/12 CD4 676 (38%) VL 959
03/03/13 CD4 642 (32%) VL 291
04/07/13 CD4 791 (33%) VL 26,437 (active cold sore, tooth infection)
18/07/13 ------retest------VL 3704
18/11/13 CD4 802 (36%) VL 65

 


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