topic Re: Latent Tuberculosis in Wellness

Latent Tuberculosis

PhatCat — Mon, 09 Feb 2015 01:22:32 GMT

Since I was diagnosed with RA recently, the doc ran a blood test for TB antibodies because you cannot be on these RA meds as they make you very susceptible to TB.

I tested positive for the antibodies but my chest x-ray shows no previous infection whatsoever. I was "exposed" to someone who had active TB.

Anyway, I have to do this vicious 12 week protocol, 16 pills weekly, taken in front of the doctor to be sure they are actually taken! I have to do this before I can take RA meds.

My question is: have any of you done this protocol? Needless to say I'm scared sh tless. One of the meds can cause severe liver damage, good thing is blood work for liver functions every two weeks. Still.... any input greatly appreciated!

thanks

Re: Latent Tuberculosis

I am still oxox — Mon, 09 Feb 2015 01:25:25 GMT

Get a second opinion

Re: Latent Tuberculosis

adelle38 — Mon, 09 Feb 2015 01:39:50 GMT

The last time I had a TB test for employment it was positive. Then I had the chest XRay which showed no evidence of the disease. My employer tried to insist I do that protocol. However, my doctor said I was in much more danger of becoming ill from those antibiotics than I was in danger of getting TB. Having said that, I am very sensitive to antibiotics and had no underlying condition such as RA. If I were you I'd talk it over with a doctor you trust. Many people do go through the TB protocol without problems but you need to have a long conversation about all the possible problems and benefits.

Re: Latent Tuberculosis

RinaRina — Mon, 09 Feb 2015 01:40:57 GMT

I have no clue what "RA" is, but I do know a lot of people who've been "exposed" to TB, including myself. "Exposure" is exposure. So what? I don't know anyone who took 16 pills a week for "exposure" to anything. I'm unclear as to why you are taking 16 pills a week. Is it for "RA" (whatever that is)?

Re: Latent Tuberculosis

Snowpuppy — Mon, 09 Feb 2015 01:42:48 GMT

On 2/8/2015 I am still oxox said:
Get a second opinion

Excellent advice.

You're going to fry your liver ahead of RA protocol which will fry your liver.

Re: Latent Tuberculosis

PhatCat — Mon, 09 Feb 2015 01:44:10 GMT

On 2/8/2015 rina33 said:
I have no clue what "RA" is, but I do know a lot of people who've been "exposed" to TB, including myself. "Exposure" is exposure. So what? I don't know anyone who took 16 pills a week for "exposure" to anything. I'm unclear as to why you are taking 16 pills a week. Is it for "RA" (whatever that is)?

Sorry rina, it is rheumatoid arthritis.

The pills are for TB, to be sure I do not develop an active case (how I do not know as I have no signs of having had it). There is a choice of 12 weeks or a 9 month protocol.

Re: Latent Tuberculosis

PhatCat — Mon, 09 Feb 2015 01:45:07 GMT

On 2/8/2015 adelle38 said:
The last time I had a TB test for employment it was positive. Then I had the chest XRay which showed no evidence of the disease. My employer tried to insist I do that protocol. However, my doctor said I was in much more danger of becoming ill from those antibiotics than I was in danger of getting TB. Having said that, I am very sensitive to antibiotics and had no underlying condition such as RA. If I were you I'd talk it over with a doctor you trust. Many people do go through the TB protocol without problems but you need to have a long conversation about all the possible problems and benefits.

Yes, this is what I am afraid of. The cure is worse than the condition.

Re: Latent Tuberculosis

PhatCat — Mon, 09 Feb 2015 01:47:32 GMT

On 2/8/2015 Snowpuppy said:
On 2/8/2015 I am still oxox said:
Get a second opinion

Excellent advice.

You're going to fry your liver ahead of RA protocol which will fry your liver.

Snowpuppy and I am still, I do think I will call my GP tomorrow and get his opinion. My rheumo is telling me that the RA can progress very quickly so it is a matter of not doing the TB protocol and then not being able to do RA meds and having disfigured joints and pain. What a decision...

Re: Latent Tuberculosis

adelle38 — Mon, 09 Feb 2015 01:53:16 GMT

On 2/8/2015 FATCATinCT said:
On 2/8/2015 Snowpuppy said:
On 2/8/2015 I am still oxox said:
Get a second opinion

Excellent advice.

You're going to fry your liver ahead of RA protocol which will fry your liver.

Snowpuppy and I am still, I do think I will call my GP tomorrow and get his opinion. My rheumo is telling me that the RA can progress very quickly so it is a matter of not doing the TB protocol and then not being able to do RA meds and having disfigured joints and pain. What a decision...

Definitely, talk to your GP. However, your rheumatologist deals with this on a daily basis so take his advice seriously and ask about how to manage possible side effects. If possible, ask a friend or relative to go with you so you can get answers to all of your questions.

Re: Latent Tuberculosis

Big Sister — Mon, 09 Feb 2015 02:17:17 GMT

Thirty Years ago I tested positive to being exposed to TB, though I did not have TB. I was put on the specific meds. After the first blood test I was told to stop the meds because my liver was being affected. Thereafter, nothing else was done and I am doing well.

Re: Latent Tuberculosis

Sweetbay magnolia — Mon, 09 Feb 2015 02:24:30 GMT

My husband is in a health-care related field (social work) and he's had to have x-rays for TB; though he never shows it, the related blood work comes up positive so in the last year he went on the meds you describe. He's 61, healthy, and completed the protocol with no immediate ill effects.

We'll see what the next round of blood work shows.

Re: Latent Tuberculosis

RinaRina — Mon, 09 Feb 2015 03:09:24 GMT

On 2/8/2015 FATCATinCT said:
On 2/8/2015 rina33 said:
I have no clue what "RA" is, but I do know a lot of people who've been "exposed" to TB, including myself. "Exposure" is exposure. So what? I don't know anyone who took 16 pills a week for "exposure" to anything. I'm unclear as to <em>why</em> you are taking 16 pills a week. Is it for "RA" (whatever that is)?

Sorry rina, it is rheumatoid arthritis.

The pills are for TB, to be sure I do not develop an active case (how I do not know as I have no signs of having had it). There is a choice of 12 weeks or a 9 month protocol.

I know tons of people who've tested positive for exposure to TB. None of them ever took any pills for "exposure". I don't mean to be obnoxious, but it sounds to me like your doctor is trying to bank some extra money on an unsuspecting patient's naiveté. Sorry, but that's JMHO.

Re: Latent Tuberculosis

adelle38 — Mon, 09 Feb 2015 03:12:26 GMT

On 2/8/2015 rina33 said:
On 2/8/2015 FATCATinCT said:
On 2/8/2015 rina33 said:
I have no clue what "RA" is, but I do know a lot of people who've been "exposed" to TB, including myself. "Exposure" is exposure. So what? I don't know anyone who took 16 pills a week for "exposure" to anything. I'm unclear as to <em>why</em> you are taking 16 pills a week. Is it for "RA" (whatever that is)?

Sorry rina, it is rheumatoid arthritis.

The pills are for TB, to be sure I do not develop an active case (how I do not know as I have no signs of having had it). There is a choice of 12 weeks or a 9 month protocol.

I know tons of people who've tested positive for exposure to TB. None of them ever took any pills for "exposure". I don't mean to be obnoxious, but it sounds to me like your doctor is trying to bank some extra money on an unsuspecting patient's naiveté. Sorry, but that's JMHO.

The OP has RA, a very serious disease. She can't take the medication she needs without first taking the medication that ensures she won't have active TB. This is a very different situation from an otherwise healthy person testing positive for TB exposure. I don't think she's naive or that her doctor is just trying to make a buck.

Re: Latent Tuberculosis

springers — Mon, 09 Feb 2015 03:18:04 GMT

My son took a tb test and tested positive also. Hes 20, he did go to mexico to help with a house build. The doctor gave him the pills and the liver complications make me nervous. The doctor said he tested positive and took the meds. Its suppose to build up antibodies. They didnt ask him to go in daily, I cant imagine anyone going to doctor daily. Do we all need to walk around with a mask?

Re: Latent Tuberculosis

PhatCat — Mon, 09 Feb 2015 16:08:34 GMT

Thank you adelle38!

The meds are paid through the state and are free to me, thankfully as I read the protocol starts at $17,000.

As adelle stated, I have a serious autoimmune disease and cannot start the meds for it until I clear up the issue of the latent TB. If it weren't for the RA, I would not have to do the protocol at all. If you'll notice next time you hear a commercial for say, Humira, it will say biologics will increase your chances for TB, and it's a very high chance.

Unfortunately too, I have 3 other autoimmune issues, Hashimotos, Sjogrens and Vitiligo. I just don't have a good feeling about this protocol is all and wanted others input.

Springers, it is a weekly protocol for 12 weeks or daily for 9 months. I opted for the 12 weeks because you cannot miss a dose and frankly, I know I will forget to take the meds on some days.

Ha, as far as the mask? Someone exposed to TB is not contagious, only people that with active TB are so if someone is coughing or sneezing all over you, turn your head quickly and walk away!

Re: Latent Tuberculosis

LilacTree — Mon, 09 Feb 2015 19:45:49 GMT

Hi, FATCAT, now I know why I haven't seen you in a while. Wow, you certainly have been given your share! Before I tackle the RA meds, just letting you know my daughter is still very ill, but working with a Lyme specialist now and on doxy. We are moving in together to try and help each other. That will be at the end of March.

Now, RA. I have had it since 2006 and it is pretty much advancing slowly, although my right hand is becoming misshapen. I never took the biologics and probably never will. The side effects really scare me. However, I have been on low dose prednisone since about 2008, and as a result have advanced osteoporosis (which I had anyway, but it worsened from the steroid). There are only bad and worse choices here (where have we heard that before?).

When was the diagnosis of RA? I am so sorry to hear that, it is a wretched disease. I've had two surgeries on my spine for compressed vertebrae from the osteoporosis caused by the prednisone to treat the RA (I also have Sjogrens). I am never without back pain and have severe physical limitations. Once one gets an autoimmune disorder, the rest just start piling on. I've never had a TB test suggested to me, I don't think I have latent TB, although I was once in a TB hospital for scarlet fever, rheumatic fever, and mono when I was 14. I would feel cautious, as you have been.

Right now the only meds I am on are 6 mg of prednisone a day (it is very hard to get off once one is on it this long, and I can't seem to get below 6 mg without total what I call "Mack Truck" effect, the RA pain comes back full force. So be careful of that too.

I wish I knew what to tell you about the meds, especially the biologics (Humira, Enbrel, Remicade, etc., . . . there are about eight of them and they are all infusions/injections except Xeljanz, which is a new one in pill form). They are extremely dangerous meds, and the RA doc won't tell you that because that's all they know to prescribe. RA is not curable, and you would have to be on one of these meds for the rest of your life, like prednisone, except far more serious side effects which you have probably seen on TV.

I don't want to scare you, some people do well on these meds temporarily until they either stop working or one gets allergic to them, and then they start the merry-go-round of going from one to another. I could go on and on . . . may I simply suggest that you do a lot of research on whatever he/she prescribes before you commit to taking any of these meds. Second opinions won't matter because they all prescribe the same thing.

Best wishes to you, I hope you will have a mild case. Some folks do.

Re: Latent Tuberculosis

grzbela — Mon, 09 Feb 2015 20:00:23 GMT

I know that this can be scary but I think you may have an option before you take on the protocol.

Ask for a QuantiFERON test. It is another form of blood work. The skin test that is the first type (where they just test your skin with the small needle) can be really variable based upon the person administering the test and the person reading the results.

I also had a latent TB diagnosis based upon the reading of the results, negative chest X-ray, and then had the Quantiferon test that came back positive. My positive skin test reading was a false positive.

The issue when you have an immuno-comprimised condition, such as RA, I think that any type of response on the skin test is viewed as positive. I would still push for a Quantiferon test.

If it comes back positive, I think you have two options: do you keep closely monitored to see of your condition goes from latent to active (and then it can be treated) or risk the really tough protocol. Under the best of circumstances, I would have been concerned (and personally was) regarding the tough treatment. And, since you have other medical conditions, I would also be concerned.

I would recommend a visit to a pulmonologist or infectious disease physician. Beyond the GP and your rheumatologist.

Good luck. I know that this is a scary time. My healing thoughts are with you.

Re: Latent Tuberculosis

PhatCat — Mon, 09 Feb 2015 20:39:44 GMT

On 2/9/2015 Ford1224 said:
Hi, FATCAT, now I know why I haven't seen you in a while. Wow, you certainly have been given your share! Before I tackle the RA meds, just letting you know my daughter is still very ill, but working with a Lyme specialist now and on doxy. We are moving in together to try and help each other. That will be at the end of March.

Now, RA. I have had it since 2006 and it is pretty much advancing slowly, although my right hand is becoming misshapen. I never took the biologics and probably never will. The side effects really scare me. However, I have been on low dose prednisone since about 2008, and as a result have advanced osteoporosis (which I had anyway, but it worsened from the steroid). There are only bad and worse choices here (where have we heard that before?).

When was the diagnosis of RA? I am so sorry to hear that, it is a wretched disease. I've had two surgeries on my spine for compressed vertebrae from the osteoporosis caused by the prednisone to treat the RA (I also have Sjogrens). I am never without back pain and have severe physical limitations. Once one gets an autoimmune disorder, the rest just start piling on. I've never had a TB test suggested to me, I don't think I have latent TB, although I was once in a TB hospital for scarlet fever, rheumatic fever, and mono when I was 14. I would feel cautious, as you have been.

Right now the only meds I am on are 6 mg of prednisone a day (it is very hard to get off once one is on it this long, and I can't seem to get below 6 mg without total what I call "Mack Truck" effect, the RA pain comes back full force. So be careful of that too.

I wish I knew what to tell you about the meds, especially the biologics (Humira, Enbrel, Remicade, etc., . . . there are about eight of them and they are all infusions/injections except Xeljanz, which is a new one in pill form). They are extremely dangerous meds, and the RA doc won't tell you that because that's all they know to prescribe. RA is not curable, and you would have to be on one of these meds for the rest of your life, like prednisone, except far more serious side effects which you have probably seen on TV.

I don't want to scare you, some people do well on these meds temporarily until they either stop working or one gets allergic to them, and then they start the merry-go-round of going from one to another. I could go on and on . . . may I simply suggest that you do a lot of research on whatever he/she prescribes before you commit to taking any of these meds. Second opinions won't matter because they all prescribe the same thing.

Best wishes to you, I hope you will have a mild case. Some folks do.

Hi Ford!

I've emailed you on your aol account but have not heard back, perhaps you haven't gotten them

So sorry your daughter is still ill, doxy is a good drug for lyme so hopefully she will not herx too bad and will be feeling better soon.!

Thanks for your thoughts on this matter. It is good to know you did not take the treatment for your RA, so there's hope! My rheumo is saying things like, "you want to be able to play with your grandson..." etc., scaring me into it. I really don't want to do the biologics, as you stated and from what I've been reading today as well, they only work for so long before you have to jump into a stronger drug so on and so forth. I was diagnosed in December and have been putting it off going on meds, again, doc is scaring me into the "gotta do it now before it progresses" mentality.

Me and prednisone do not mix but a low dose I can handle. I will talk to her about that at my next visit.

Take care...Cath

Re: Latent Tuberculosis

PhatCat — Mon, 09 Feb 2015 20:46:50 GMT

On 2/9/2015 grzbela said:
I know that this can be scary but I think you may have an option before you take on the protocol.

Ask for a QuantiFERON test. It is another form of blood work. The skin test that is the first type (where they just test your skin with the small needle) can be really variable based upon the person administering the test and the person reading the results.

I also had a latent TB diagnosis based upon the reading of the results, negative chest X-ray, and then had the Quantiferon test that came back positive. My positive skin test reading was a false positive.

The issue when you have an immuno-comprimised condition, such as RA, I think that any type of response on the skin test is viewed as positive. I would still push for a Quantiferon test.

If it comes back positive, I think you have two options: do you keep closely monitored to see of your condition goes from latent to active (and then it can be treated) or risk the really tough protocol. Under the best of circumstances, I would have been concerned (and personally was) regarding the tough treatment. And, since you have other medical conditions, I would also be concerned.

I would recommend a visit to a pulmonologist or infectious disease physician. Beyond the GP and your rheumatologist.

Good luck. I know that this is a scary time. My healing thoughts are with you.

Thanks for your reply!

I did have the Quantiferon test, which came out positive. I don't think it was a high positive though because the rheumo sent me to an infectious disease doc because it was positive but unclear. Apparently I do not have to do the TB protocol, only if I am going to do the RA meds.

Re: Latent Tuberculosis

Group 5 minus 1 — Mon, 09 Feb 2015 21:26:37 GMT

DH says yep it is true.