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

Interested in more discussions like this? Go to the Infectious Diseases Support Group.

@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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Daniela, he above is a REAL reason to get on my Mayo Clinic Connect Forum that I suggested below .. we have all had to deal with he side effects of drugs ... do NOT be afraid .. we have been though this journey .. we will help you! Katherine

https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=18#post-243182
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It has been a while since I've posted. My recent lung report for a cavitary lesion was great news and no need for followup any longer. 30 days later I was slammed with a positive tb gold test and started med.

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Welcome back @jewel8888. It's good to hear from you.
You'll notice that I moved your message to this discussion about latent TB in the Infectious Diseases group. I'm so sorry that you are now dealing with this new diagnoses after getting an all-clear on the cavitary lesions.

I encourage you to click VIEW & REPLY in the email notification and read through the past responses that have quite a bit of information from @danielad, @flor and others.

Jewel, what medications did you start and how long will you be on them?

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@colleenyoung

Welcome back @jewel8888. It's good to hear from you.
You'll notice that I moved your message to this discussion about latent TB in the Infectious Diseases group. I'm so sorry that you are now dealing with this new diagnoses after getting an all-clear on the cavitary lesions.

I encourage you to click VIEW & REPLY in the email notification and read through the past responses that have quite a bit of information from @danielad, @flor and others.

Jewel, what medications did you start and how long will you be on them?

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Thank you so much @colleenyoung your reply was very thoughtful and I appreciate your moving me in the right direction. I hope your doing well yourself ☺

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@colleenyoung

Welcome back @jewel8888. It's good to hear from you.
You'll notice that I moved your message to this discussion about latent TB in the Infectious Diseases group. I'm so sorry that you are now dealing with this new diagnoses after getting an all-clear on the cavitary lesions.

I encourage you to click VIEW & REPLY in the email notification and read through the past responses that have quite a bit of information from @danielad, @flor and others.

Jewel, what medications did you start and how long will you be on them?

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My medications are isonizid 300 mg for 9 months and vitamin b. I will see Dr. Every month with labs.

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@jewel8888

It has been a while since I've posted. My recent lung report for a cavitary lesion was great news and no need for followup any longer. 30 days later I was slammed with a positive tb gold test and started med.

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@llwortman ThAnk you, i do have a great team and the MAC group helped me thru many difficult tests, many questions, and so supportive !!! My best to you and all the members. Julie

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Good evening. I have been on the meds for latent tb three weeks. The pain in my calves, back and neuropathy have increased tremendously. The situation for my family has gotten financially strained becAuse my husband and his father are unable to get free testing and their employers will not let them work without being tested. We already have to move at end of next month, without their income I am really concerned how and where I will continue treatment myself. I am venting, and praying.

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Hi, I am so sorry about your side effects from the tb meds. You have a number of concerns on your plate right now. Have you checked into your husband & father getting their TB test at your local public health department. One of their missions is controlling communicable diseases. May your prayers be answered. Hugs, Penny

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Your reply means the world to me and I have called our health dept. Gosh, she seems alarmed with all my problems , treatment and latent diagnosis. She is getting help and I am waiting on a call back. From having the cAviTary lesion diagnosis two yrs ago, a negative tb gold test now a positive one I am really confused. The spine pain has gotten worse so I am wondering if that is from tb. You are sweet to reply, i dont see anyone else here in my situation so thsnnk you for reaching out. Hugs

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@jewel8888

Your reply means the world to me and I have called our health dept. Gosh, she seems alarmed with all my problems , treatment and latent diagnosis. She is getting help and I am waiting on a call back. From having the cAviTary lesion diagnosis two yrs ago, a negative tb gold test now a positive one I am really confused. The spine pain has gotten worse so I am wondering if that is from tb. You are sweet to reply, i dont see anyone else here in my situation so thsnnk you for reaching out. Hugs

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Dear Jewel, I assume this is your name. I am so glad the health department is trying to help you! May this give you the support you need in this area of TB. I know it is hard but try to stay strong. Blessings, penny

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