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honeybtorres
@honeybtorres

Posts: 6
Joined: Sep 01, 2018

Latent TB, side effects, and my Anxiety

Posted by @honeybtorres, Sat, Sep 1 6:27pm

Hello All-
About a month ago, while getting my testing complete to begin Nursing Clinicals, my TB titer cane back positive for latent TB. I was immediately called in for an xray, which came back clear, but was told i needed a 3moth course of meds! 9 pills(3of one, and 6 of another) once weekly. I was told side effects would be slim to none.
Well thats a gross understatement. I have been severly fatigued, emotional, nauseated, and have had no appetite which has caused weightloss. Is this normal? Not only this but my anxiety and panic attacks have been at an all time high!
And not only do i have latent, but my 14 yr old daughter does too! Shes on her secomd week of tge nine pill regimine, and seems good so far.
I was told by my ptimsry care to stop kymvourse at 6 weeks left and they set me up with an appt with an infectious disease specialist. Im sick amd discouraged. A Any advice for a Poor Honey B ?

Liked by Dee

REPLY

Hi @honeybtorres,

I can only imagine your anxiety! Unfortunately, I have read that patients who are over 35-40 years do experience more side-effects during treatment. If you have latent TB, you do need treatment to prevent the disease from becoming active.

I'd like to introduce you to @flor @danielad @jewl8888 @jjgardner and @melissa23, who've shared their experiences, and I hope they will join in with some more information for you. May I ask you to share more details about the medications you've been prescribed?

Liked by Dee

@irene5 I am sorry you are having a difficult time with latent TB. Two of my ten children had that and were on isoniazid for nine months(one pill a day). They had no side effects that I can recall. It seems to me one pill a day is the standard for it, but I am no doctor. Since you had no symptoms you should be ok. You don’t have active disease. Are you from another country? Six of my children are from China. Theirs was the result of BCG . They will always test positive but don’t have active disease. I am so sorry you are so miserable. Isoniazid once a day is all my kids were required to take. Good luck!

Liked by Dee

Hi, I am so sorry you are going through these hard times. I know that you will find help in this group and many friends. I know how difficult it is to deal with anxiety. Hang in there it will get a bit easier as you go. All the best to you and your daughter!!

Liked by Dee

Hello @honeybtorres,

I am sorry to hear about your plight. I can only imagine how difficult this has been and is for you and your daughter!

I have Latent TB as well; however, on the advice of my Pulmonologist, I decided NOT to "treat" it. In my case, and I will restate — "In My Case", she said that the negative side-effects of the meds far outweigh the benefits. The negative side-effects she mentioned are those on the liver. By the way, my liver is perfectly fine.

The reason I emphasized " in my case", is that this may not be the correct path for you, or others. For instance, your future profession (Nursing) may require you to have been prophylacticly treated. I am not a doctor, so my health care decisions are based on that which, at least at present, appears to be "my" best approach.

It certainly can be confusing! As I explored the "best option", I researched medical literature and of course, received medical advice — 2 Infection Disease doctors left it up to me, they didn't see urgency or a mandatory need to begin treatment. My Pulmonologist, as I mentioned, does not want me to begin any treatment for Latent TB. My Rheumatologist vehemently disagreed with the Pulmonologist. He believes I must do the treatment, because he will not be able to treat me with an immunosuppressant to counter a flare-up of any Autoimmune Diseases (I have symptoms of a few, but testing is negative). My Primary Care doctor left it up to me.

Yes, confusing and frustrating, to say the least! As I said, I am not a doctor, so my words are based on my experience and that of others I have read about. But I would encourage you to receive medical advice from specialized areas of Medicine. At a minimum, from Infectious Disease, Pulmonology, and Primary care. If you have any other ailments, I would request opinions/support from those specialty areas. In my case, it was Rheumatology; in yours it may be a specialist to address you anxiety and panic attacks.

If there is one thing I've learned along the way, is that we must be our own advocates. And very importantly, know that you are not alone dear Honey B.

Noticed I didn't use "Poor" Honey B? That's because you are not!

Hugs to you and your daughter … D.

@irene5

@irene5 I am sorry you are having a difficult time with latent TB. Two of my ten children had that and were on isoniazid for nine months(one pill a day). They had no side effects that I can recall. It seems to me one pill a day is the standard for it, but I am no doctor. Since you had no symptoms you should be ok. You don’t have active disease. Are you from another country? Six of my children are from China. Theirs was the result of BCG . They will always test positive but don’t have active disease. I am so sorry you are so miserable. Isoniazid once a day is all my kids were required to take. Good luck!

Jump to this post

No. Im from Wisconsin.

Liked by Dee

@danielad

Hello @honeybtorres,

I am sorry to hear about your plight. I can only imagine how difficult this has been and is for you and your daughter!

I have Latent TB as well; however, on the advice of my Pulmonologist, I decided NOT to "treat" it. In my case, and I will restate — "In My Case", she said that the negative side-effects of the meds far outweigh the benefits. The negative side-effects she mentioned are those on the liver. By the way, my liver is perfectly fine.

The reason I emphasized " in my case", is that this may not be the correct path for you, or others. For instance, your future profession (Nursing) may require you to have been prophylacticly treated. I am not a doctor, so my health care decisions are based on that which, at least at present, appears to be "my" best approach.

It certainly can be confusing! As I explored the "best option", I researched medical literature and of course, received medical advice — 2 Infection Disease doctors left it up to me, they didn't see urgency or a mandatory need to begin treatment. My Pulmonologist, as I mentioned, does not want me to begin any treatment for Latent TB. My Rheumatologist vehemently disagreed with the Pulmonologist. He believes I must do the treatment, because he will not be able to treat me with an immunosuppressant to counter a flare-up of any Autoimmune Diseases (I have symptoms of a few, but testing is negative). My Primary Care doctor left it up to me.

Yes, confusing and frustrating, to say the least! As I said, I am not a doctor, so my words are based on my experience and that of others I have read about. But I would encourage you to receive medical advice from specialized areas of Medicine. At a minimum, from Infectious Disease, Pulmonology, and Primary care. If you have any other ailments, I would request opinions/support from those specialty areas. In my case, it was Rheumatology; in yours it may be a specialist to address you anxiety and panic attacks.

If there is one thing I've learned along the way, is that we must be our own advocates. And very importantly, know that you are not alone dear Honey B.

Noticed I didn't use "Poor" Honey B? That's because you are not!

Hugs to you and your daughter … D.

Jump to this post

Thank you so very much

Liked by Dee

@kanaazpereira

Hi @honeybtorres,

I can only imagine your anxiety! Unfortunately, I have read that patients who are over 35-40 years do experience more side-effects during treatment. If you have latent TB, you do need treatment to prevent the disease from becoming active.

I'd like to introduce you to @flor @danielad @jewl8888 @jjgardner and @melissa23, who've shared their experiences, and I hope they will join in with some more information for you. May I ask you to share more details about the medications you've been prescribed?

Jump to this post

We are on idoniazid and
Priftin.
I am on escitalopram as well for my anxiety

Liked by Dee

@honeybtorres – I'm curious whether you had the initial result confirmed by a second TB blood test. I recently had a "surprise" positive Quantiferon Gold blood test while trying to find an answer for chronic health issues since June. The infectious disease specialist I'm seeing is thinking it might be a false positive (since I'm relatively low-risk, clear chest X-ray and negative blood test as recently as 2011/skin test as recently as 2015) and is having me repeat the test. Obviously your situation is different, but I'm curious whether that was considered for you, or if anyone else has had a "false positive" TB Quantiferon Gold.

Also, I don't know if you had the blood or the skin test, but I know the skin test is more likely to have false positives, particularly if you have routine TB skin tests (which you might being in healthcare).

Lastly, I've been having nausea with my current issues, and the gastroenterologist suggested I take a B6 supplement, and I do think that's improved the nausea somewhat. Might be something to ask about.

Good luck! Hope you feel better soon.

I am female 60 years old. Back when I was 13 i had a positive skin test. I remember being prescribed a medicine from the health department but I don’t remember how often I took the medicine. My parents are deceased and the health department doesn’t have any records or files from that period. Should I take all the medicines again?

@susiems

I am female 60 years old. Back when I was 13 i had a positive skin test. I remember being prescribed a medicine from the health department but I don’t remember how often I took the medicine. My parents are deceased and the health department doesn’t have any records or files from that period. Should I take all the medicines again?

Jump to this post

Hello @susiems. I moved your discussion and combined it with an existing discussion titled, "latent TB, side effects and my anxiety." I did this so the other members discussing latent TB would see your post and so that you could read through the posts the other members have made.

@susiems, if you don't mind sharing, have you had a positive test again? If so, have been prescribed the medications again?

@JustinMcClanahan

Hello @susiems. I moved your discussion and combined it with an existing discussion titled, "latent TB, side effects and my anxiety." I did this so the other members discussing latent TB would see your post and so that you could read through the posts the other members have made.

@susiems, if you don't mind sharing, have you had a positive test again? If so, have been prescribed the medications again?

Jump to this post

Yes I had a blood test that I requested from my general practitioner. The test came back positive and I was immediately contacted by my local health department. They wanted a new chest X-ray and then that was going to be referred to an infectious disease doctor for medication. In the mean time I had a ruptured colon, had emergency surgery with a colostomy bag for 3 months and just had a reversal surgery done 3 weeks ago. Prior to the reversal surgery I had a pre op chest xray done and that was sent to the health department. It showed negative for TB. The health department has put on hold any decision until I heal. They said I could sign a release saying I received treatment when I was younger or take a new series of medicine. I don’t know what to do?

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