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Author Topic: Hair loss with TLD , Isoniazid, pyradoxin  (Read 10449 times)

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Offline SAPOSITIVE

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Hair loss with TLD , Isoniazid, pyradoxin
« on: July 30, 2023, 06:12:31 am »
Hi all,
My brief below.
I'm on 6 months of TLD, 1 week after diagnoses.
4 months on Isoniazid/ pyradoxin. ( TB preventative treatment)
My hair loss started day 1, together with a million other side effects. All which I was told was due to massive trauma and shock my body was going through.  And also my body adapting to the meds.
95% of all the other side effects are gone now . But the hair loss is not stopping. It's now moved to eyebrow hair  loss starting.
Also, my hair quality is way diffrent. Very, very, silky. Not complaining there!
Has anyone experience this? Please tell me it stops?
I can't say it's the TLD or the trauma I went through.
On that note, I don't believe cd4 count is a true reflection of the onset of aids. Especially that "below 200"number. I was about 260 when I went in to hospital with numerous symptoms revealing itself and this was when I was diagnosed.  I had just lost 20kg in 4 weeks, since feeling ill. Wasting syndrome at its best! I was clearly on my way out. Thank the Lord for the ARV!
The 1 blessing that came from when I fell ill, is that I completely lost any craving for smoking. It never came back! 35 years of smoking later, and I'm so glad!
After 2 months being on TLD, they started me on Isoniazid and Pyradoxin also, as a TB preventative treatment for 12 months!
 I am clueless why on earth this was needed. I have no TB markers on any Xrays. And I don't live , work, or play in any environments that have TB alerts. They claimed it was our health system that enforces it. 
Can I say no? Would you?
This same TB drug , after 1 month, revealed a crazy side-effect..... I rushed into ER with 99% stroke symptoms. The scans revealed nothing. Doctors claimed it was TIA. Which is a temporary blood clot.
I said to them BS. I maintain it's the damn pills, and then a specialist agreed eventually. And upped my vitamin B6 ( pyradoxine) dose. It's been ok since. Although I still feels tingling.
Do any of you folks have to go on TB preventative  trearment in your countries.?

Thanks for reading

Offline Charles.M

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Re: Hair loss with TLD , Isoniazid, pyradoxin
« Reply #1 on: July 31, 2023, 08:30:25 am »
Hi,
I have been in treatment for about 2 months, I have noticed my hair thinning slightly as well. It also has a different texture as well. At the advice of someone on here I have been using Nizoral shampoo which helped a bit. I also found it helped with the itching I was experiencing.

I do agree with you about the 200 number not being a true line in the sand for everyone. The only symptom I ever had was a slight case of thrush which so minor I actually did not know I had it. I did loose some weight, but I was working long hours in the Florida Sun (10-12 days) for several months. My diagnosis came from a routine blood panel during my annual physical. The HIV test was never part of it before but was this last time. As I stated I felt perfectly fine and my CD4 was 72.

Perhaps i am just very lucky I have had no OIs before during or since, I was previously vaccinated for Pneumonia so maybe that helped me. My ID doctor said with my CD4 count she was quite suprised I was not full of lesions, pneumonia etc. She expressed surprise that I did not have anything other conditions or STDS, as well  the fact that I never had any STD prior to this. After 4 weeks on Biktarvy my VL went form 63,400 to 63 or VL suppression. I get my next blood test in a few weeks anxious to see CD count and maybe undetectable.

Upon DX I was put on Bactrim, Nystatin and Flucanazole as well as Biktarvy. I am now only taking the Bactrim and Biktarvy. l was told the Bactrim will be eliminated in 
about 6 months or when my CD4 hits 200 plus. On the same note I was taking Vitamin D OTC as directed by my PCP and the ID dr told to stop taking it because it could interfere somehow with the Biktarvy or Bactrim?

As far as the near stroke episode, I experience an elevated heart rate and BP has gone up to the point where I may be diagnosed with hypertension. My wife thinks and I concur that a good part of this is the stress of being newly diagnosed and having to live with it. I also believe that the Bactrim is contributing to it as well.

The tingling and sudden sharp pains I get those as well, they come and go fortunately they last a very short duration. I am hopefull that this will subside as I get better

I am in the US what Country are you from?
05/22/23 INITIAL DX
05/26/23 CD4-72/VL-63,400
06/06/23 STARTED BIKTARVY
07/05/23 CD4-NT/VL-63
08/08/23 CD4-163/VL-21
09/15/23 CD4-NT/VL<20
10/17/23 CD4-162/UD
12/25/23 CD4-149/UD

Offline Jim Allen

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Re: Hair loss with TLD , Isoniazid, pyradoxin
« Reply #2 on: July 31, 2023, 08:53:34 am »
Hi all,
My brief below.
I'm on 6 months of TLD, 1 week after diagnoses.
4 months on Isoniazid/ pyradoxin. ( TB preventative treatment)
My hair loss started day 1, together with a million other side effects. All which I was told was due to massive trauma and shock my body was going through.  And also my body adapting to the meds.
95% of all the other side effects are gone now . But the hair loss is not stopping. It's now moved to eyebrow hair  loss starting.
Also, my hair quality is way diffrent. Very, very, silky. Not complaining there!
Has anyone experience this? Please tell me it stops?
I can't say it's the TLD or the trauma I went through.
On that note, I don't believe cd4 count is a true reflection of the onset of aids. Especially that "below 200"number. I was about 260 when I went in to hospital with numerous symptoms revealing itself and this was when I was diagnosed.  I had just lost 20kg in 4 weeks, since feeling ill. Wasting syndrome at its best! I was clearly on my way out. Thank the Lord for the ARV!
The 1 blessing that came from when I fell ill, is that I completely lost any craving for smoking. It never came back! 35 years of smoking later, and I'm so glad!
After 2 months being on TLD, they started me on Isoniazid and Pyradoxin also, as a TB preventative treatment for 12 months!
 I am clueless why on earth this was needed. I have no TB markers on any Xrays. And I don't live , work, or play in any environments that have TB alerts. They claimed it was our health system that enforces it. 
Can I say no? Would you?
This same TB drug , after 1 month, revealed a crazy side-effect..... I rushed into ER with 99% stroke symptoms. The scans revealed nothing. Doctors claimed it was TIA. Which is a temporary blood clot.
I said to them BS. I maintain it's the damn pills, and then a specialist agreed eventually. And upped my vitamin B6 ( pyradoxine) dose. It's been ok since. Although I still feels tingling.
Do any of you folks have to go on TB preventative  trearment in your countries.?

Thanks for reading

Hiya.

Sorry to hear that you have been unwell. Sometimes things can feel much worse before they get better, this can be the immune system starting to work again and causing symptoms, not to mention stress/shock and the impact that can have on hair.

Glad to hear, though, that things are getting better and settling in, its within the first year so hopefully things will continue to improve during that year.

Regarding TB drugs, taking them as standard and the problems they might be causing you, here we don't get TB drugs as standard. We do get antibiotics to prevent other issues if our CD4% or count is low but TB isn't common enough and it's not killing HIV patients here.

The prevalence is only 4.3 cases per 100,000 population in Ireland vs in some nations where TB drugs might be a pretty common thing for HIV patients to take have a higher prevalence such as 537 per 100,000 population per year.



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Offline harleymc

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Re: Hair loss with TLD , Isoniazid, pyradoxin
« Reply #3 on: September 05, 2023, 07:03:25 am »
A TIA is not a 'near stroke', it is a stroke.

It unfortunately means you're at risk of a recurrence.

Your health care plan needs to take this into account.
Have you got a current will and.is a power of attorney drawn up in case of emergency?


Offline leatherman

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Re: Hair loss with TLD , Isoniazid, pyradoxin
« Reply #4 on: September 05, 2023, 08:43:47 pm »
Quote
the 200 number not being a true line in the sand for everyone.
the catch to that cd4 count is that it's just a quantitative result not a quality result. The general rule is that the fewer cd4s you have, the less your immune system can fight infections. But the amount of cd4s doesn't tell you anything about how effective your cd4s are. A working immune system, even a barely working immune system, can still be an effective working immune system.

The 200 mark is notable because at that point your immune system has almost quit working and OIs can take hold. Actually most any infection can become a big deal at that point. At <200, your immune system is simply too weak to do much of anything. It's not unusual to be not feel sick when your immune system isn't responding. A lot of "symptoms" are actually your immune system working to clear an issue; so not having symptoms is another sign that your immune system isn't working. Some PLWH actually get sicker after starting ARVs because once the HIV is reduced and cd4s start increasing, the immune system starts actually fighting off diseases and suddenly you've got "symptoms" - symptoms of your body working again.

Of course, in part because cd4s can change by 100 points in a day, that 200 is not an exact number that everyone's body is going to correspond too. Wasting, KS, some pneumonias and cancers, and other symptoms can start long before 200; science scientific studies show that 200 is the most common number at which people's immune systems become too weak to fight off life-threatening viruses and infection. Your doctors, now and in the future, who know that your cd4s have been <200 will be more likely to evaluate any issues you have in the future with more diligence. That's a good thing!

Another good thing by that <200 number being as AIDS diagnosis is (at least in America where health care is a complicated mess) that it is a data factor in your case that can make you more eligible for more complete health care. Thank those guys who helped create and push the Ryan White Care Act into a law. Because of that people who have HIV and those also diagnosed with AIDS are more likely to get subsidized treatment and health care. And that's a good thing too. ;)
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline SAPOSITIVE

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Re: Hair loss with TLD , Isoniazid, pyradoxin
« Reply #5 on: November 04, 2023, 10:20:47 am »
Thanks for the responses all.
Seems my body has adapted itself to everything by now.
My rash is going away. Hair grew back. No more tingling. Still have slight itchy facial and scalp . Using stuff for it though.
The TIA was not confirmed, due it being very brief accurance. Scan also won't see it unless it happens same time. It's just a label they wanna use I guess.
Cd4 around 600 2 months ago
VL about 20
So I guess this is the new me , that I have to live with for my remaining days!
My ex,ex -girlfriend, who tested neg, is now kinda seeing me again. She accepts that I'm 100% safe. I guess it helps.
I was  not ready to even try and date..... I would feel so obligated to inform the person upfront.... and probably scare them all away!
The girl who passed this dreaded virus onto me, is doing OK  , after a major surgery due to an extremely rapid onset of  ovarian cancer shortly after hiv diagnosis. Her ex boyfriend, who infected her, should be locked up or better,  left to rot in a hole. It was discovered he had been infected years ago, and stopped his meds. And there are now 6 people that we know of , that he has infected directly, or indirectly. Our laws are pathetic in South Africa. The police service told me that there is no case, as it's not a crime here. WTF!.? He is the exact reason why we hold the highest rates in the world!
Anyways.... enough said..... let's be grateful for ARV and I hope we all live long happy lives!

Offline Jim Allen

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Re: Hair loss with TLD , Isoniazid, pyradoxin
« Reply #6 on: November 04, 2023, 10:48:51 am »
Glad to hear your lab results are good and you are feeling better physically.

HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

My Instagram
Threads

Offline leatherman

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Re: Hair loss with TLD , Isoniazid, pyradoxin
« Reply #7 on: November 04, 2023, 10:52:21 am »
She accepts that I'm 100% safe. I guess it helps.
when you've been undetectable for 6 months, you can no longer transmit HIV

Quote
I was  not ready to even try and date..... I would feel so obligated to inform the person upfront.... and probably scare them all away!
Dating certainly can be an issue. Until you're ready to have sex with a partner, I wouldn't bother telling them about your HIV status. Then be prepared to explain ARVs, undetectable = untransmittable, using condoms, PrEP and PEP.

leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Tonny2

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Re: Hair loss with TLD , Isoniazid, pyradoxin
« Reply #8 on: November 04, 2023, 01:28:48 pm »




                 ojo.             Hi OP, we have had members on here with same symptoms of hair loss not having to do with the meds it has to do with stress. Im glad you are doing well now and wishing you the best…hugs

 


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