Looking for others who have latent tuberculosis (TB)

Posted by flor @flor, Apr 29, 2016

LOOKING FOR PATIENTS THAT HAVE LATENT TUBERCULOSIS AND KNOW ABOUT THEIR MEDICINES AND SIDE EFFECTS

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Hi @flor, here is some information I found on treatments and common drugs used for TB http://www.mayoclinic.org/diseases-conditions/tuberculosis/diagnosis-treatment/treatment/txc-20188961

I also want to connect you with @melissa23, who has written previously about being treated for latent TB. I hope that she can share her experience with you.

Have you been diagnosed with latent TB?

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@aliskahan

Hi @flor, here is some information I found on treatments and common drugs used for TB http://www.mayoclinic.org/diseases-conditions/tuberculosis/diagnosis-treatment/treatment/txc-20188961

I also want to connect you with @melissa23, who has written previously about being treated for latent TB. I hope that she can share her experience with you.

Have you been diagnosed with latent TB?

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Thank you so much for getting in touch with me.I would love to hear what others have done

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@aliskahan

Hi @flor, here is some information I found on treatments and common drugs used for TB http://www.mayoclinic.org/diseases-conditions/tuberculosis/diagnosis-treatment/treatment/txc-20188961

I also want to connect you with @melissa23, who has written previously about being treated for latent TB. I hope that she can share her experience with you.

Have you been diagnosed with latent TB?

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No I don't have latent tuberculosis but one of my children has it and also a grandaughter so my husband and I are very worried<br />
<br />

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@flor we took your questions about medications for latent TB and their side effects to a pharmacist here at Mayo Clinic. She writes: Common medications used for latent TB include isoniazid and rifampin. Sometimes a person will use one or the other, and sometimes they are used together. Usual treatment lasts for 6 to 9 months for isoniazid alone, lasts for 4 months if on rifampin alone, or lasts for 3 months if taking them together.

Isoniazid may increase the blood pressure, cause liver problems, skin rash, nausea, vomiting, diarrhea, swelling of breast tissue in males, vision problems, and vitamin B6 deficiency which may lead to peripheral neuropathy. It is sometimes recommended that a person taking isoniazid long term should also take a B6 supplement due to this side effect.

Rifampin must be taken on an empty stomach and can also affect the liver, cause stomach upset and rash. Less common side effects include swelling, flushing, itchy skin, muscle pain and weakness, fatigue, vision problems, and kidney problems.

When on either of these medications it is common to have routine bloodwork to monitor the kidneys and liver. It is also important to avoid alcohol and discuss all medications with your doctor or pharmacist as there may be a number of drug interactions.

Do you know if your family members are familiar with any of these drugs or have tried any yet?

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First of I want to thank you for your answer it is very enlightening. My granddaughter allready saw an specialist tuberculosis and she hasn't started her medication .Maybe next week she will have her prescription.When she does I will get in touch with you.

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@aliskahan

@flor we took your questions about medications for latent TB and their side effects to a pharmacist here at Mayo Clinic. She writes: Common medications used for latent TB include isoniazid and rifampin. Sometimes a person will use one or the other, and sometimes they are used together. Usual treatment lasts for 6 to 9 months for isoniazid alone, lasts for 4 months if on rifampin alone, or lasts for 3 months if taking them together.

Isoniazid may increase the blood pressure, cause liver problems, skin rash, nausea, vomiting, diarrhea, swelling of breast tissue in males, vision problems, and vitamin B6 deficiency which may lead to peripheral neuropathy. It is sometimes recommended that a person taking isoniazid long term should also take a B6 supplement due to this side effect.

Rifampin must be taken on an empty stomach and can also affect the liver, cause stomach upset and rash. Less common side effects include swelling, flushing, itchy skin, muscle pain and weakness, fatigue, vision problems, and kidney problems.

When on either of these medications it is common to have routine bloodwork to monitor the kidneys and liver. It is also important to avoid alcohol and discuss all medications with your doctor or pharmacist as there may be a number of drug interactions.

Do you know if your family members are familiar with any of these drugs or have tried any yet?

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Hi Ali,

I was diagnosed with "Latent TB" 5 years ago and now I am being pressured by an Infectious Disease (ID) Doctor to start on the 3-month treatment you mentioned above. However, my pulmonologist (I have a mild case of Bronchiectasis), is totally opposed to ANY treatment, due to my age: 66.

While in the Army, I had a positive TB tine test (around 35 years ago); nothing was done then. Apparently, I have lived with this "issue" for a while. However, now the term is "Latent TB" and it is something the ID Doctor wants to take care of.

Are there any guidelines regarding "age"? Is there some sort of research indicating what is the appropriate way to go?

Thanks!

Daniela

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Hi All,

I was diagnosed with "Latent TB" 5 years ago and now I am being pressured by an Infectious Disease (ID) Doctor to start on the 3-month treatment commonly used. However, my pulmonologist (I have a mild case of Bronchiectasis), is totally OPPOSED to ANY treatment due to my age: Over 60.

Are there any guidelines regarding "age"? Is there some sort of research indicating what is the appropriate way to go?

Thanks!

Daniela

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@aliskahan

@flor we took your questions about medications for latent TB and their side effects to a pharmacist here at Mayo Clinic. She writes: Common medications used for latent TB include isoniazid and rifampin. Sometimes a person will use one or the other, and sometimes they are used together. Usual treatment lasts for 6 to 9 months for isoniazid alone, lasts for 4 months if on rifampin alone, or lasts for 3 months if taking them together.

Isoniazid may increase the blood pressure, cause liver problems, skin rash, nausea, vomiting, diarrhea, swelling of breast tissue in males, vision problems, and vitamin B6 deficiency which may lead to peripheral neuropathy. It is sometimes recommended that a person taking isoniazid long term should also take a B6 supplement due to this side effect.

Rifampin must be taken on an empty stomach and can also affect the liver, cause stomach upset and rash. Less common side effects include swelling, flushing, itchy skin, muscle pain and weakness, fatigue, vision problems, and kidney problems.

When on either of these medications it is common to have routine bloodwork to monitor the kidneys and liver. It is also important to avoid alcohol and discuss all medications with your doctor or pharmacist as there may be a number of drug interactions.

Do you know if your family members are familiar with any of these drugs or have tried any yet?

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Hi @danielad,
Here are some treatment guidelines for Latent TB, posted by the CDC (Centers for disease control &Prevention): http://bit.ly/2h7wUyZ

I also hope that @flor, @melissa23, @imeehaight, can share their experiences with you as they have written previously about being treated for latent TB or TB.

@danielad, besides your age, did your pulmonologist give you any other reasons that he/she is reluctant to treat the Latent TB?

REPLY
@aliskahan

@flor we took your questions about medications for latent TB and their side effects to a pharmacist here at Mayo Clinic. She writes: Common medications used for latent TB include isoniazid and rifampin. Sometimes a person will use one or the other, and sometimes they are used together. Usual treatment lasts for 6 to 9 months for isoniazid alone, lasts for 4 months if on rifampin alone, or lasts for 3 months if taking them together.

Isoniazid may increase the blood pressure, cause liver problems, skin rash, nausea, vomiting, diarrhea, swelling of breast tissue in males, vision problems, and vitamin B6 deficiency which may lead to peripheral neuropathy. It is sometimes recommended that a person taking isoniazid long term should also take a B6 supplement due to this side effect.

Rifampin must be taken on an empty stomach and can also affect the liver, cause stomach upset and rash. Less common side effects include swelling, flushing, itchy skin, muscle pain and weakness, fatigue, vision problems, and kidney problems.

When on either of these medications it is common to have routine bloodwork to monitor the kidneys and liver. It is also important to avoid alcohol and discuss all medications with your doctor or pharmacist as there may be a number of drug interactions.

Do you know if your family members are familiar with any of these drugs or have tried any yet?

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Hi @kanaazpereira,

Thank you for the prompt reply and the CDC URL. I will check it.

To answer your question, my Pulmonologist said that Latent TB treatment is dangerous under the best of circumstances (liver toxicity). However, for people over 65 (such as me), she said the treatment would be even more dangerous with possible disastrous effects on the liver. She considers this risk unacceptable; thus, will not agree to ANY type of Latent TB treatment.

Thanks! Daniela

REPLY
@aliskahan

@flor we took your questions about medications for latent TB and their side effects to a pharmacist here at Mayo Clinic. She writes: Common medications used for latent TB include isoniazid and rifampin. Sometimes a person will use one or the other, and sometimes they are used together. Usual treatment lasts for 6 to 9 months for isoniazid alone, lasts for 4 months if on rifampin alone, or lasts for 3 months if taking them together.

Isoniazid may increase the blood pressure, cause liver problems, skin rash, nausea, vomiting, diarrhea, swelling of breast tissue in males, vision problems, and vitamin B6 deficiency which may lead to peripheral neuropathy. It is sometimes recommended that a person taking isoniazid long term should also take a B6 supplement due to this side effect.

Rifampin must be taken on an empty stomach and can also affect the liver, cause stomach upset and rash. Less common side effects include swelling, flushing, itchy skin, muscle pain and weakness, fatigue, vision problems, and kidney problems.

When on either of these medications it is common to have routine bloodwork to monitor the kidneys and liver. It is also important to avoid alcohol and discuss all medications with your doctor or pharmacist as there may be a number of drug interactions.

Do you know if your family members are familiar with any of these drugs or have tried any yet?

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Hello Daniela, Welcome to Mayo Clinic Connect! You have found an excellent source of information and support. I myself know ZERO about "Latent TB" .. but I know a LOT about dealing with doctors and medical issues in general! Might I suggest you take a look at my particular Mayo Clinic Connect Forum that deals with a type of Non Tubercular lung issues .. frankly MANY of the members on our Forum have been MISDIAGNOSED and UNTIL they become advocated for themselves .. EDUCATE themselves .. due their OWN "Due Diligence" .. they do NOT get the proper medical attention! Sorry but this has been the truth.
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=18#post-243182
On this particular Forum you WILL learn how to advocate for yourself .. how to put together a game plan .. now NOT to be pressured into ANYTHING because you have educated YOURSELF! Once you have posted on our Forum all of us will try to help you further. Read a few pages of our Mayo Clinic Connect .. after you have done so .. post a few questions .. then we will all try to help you further. We will be there for you on this journey as far as we can despite the fact we have NOT been diagnosed as "Latent TB".
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Here is one article you might want to read on Latent TB:
https://www.cdc.gov/tb/publications/factsheets/general/ltbiandactivetb.htm
and http://www.mayoclinic.org/diseases-conditions/tuberculosis/symptoms-causes/dxc-20188557
Symptoms Although your body may harbor the bacteria that cause tuberculosis, your immune system usually can prevent you from becoming sick. Latent TB. In this condition, you have a TB infection, but the bacteria remain in your body in an inactive state and cause no symptoms. Latent TB, also called inactive TB or TB infection, isn't contagious. It can turn into active TB, so treatment is important for the person with latent TB and to help control the spread of TB. An estimated 2 billion people have latent TB.

**here are more: https://www.google.com/search?q=LATENT+TB&ie=&oe=

Good Luck Daniela, hope the above helps you just a little. I know this is a really tough time for you .. sending you a Hug! Katherine

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