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TB test


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#1 Seton

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Posted 08 November 2009 - 05:12 AM

I just got a TB test last week, felt sick immediately after. The results came back positive, not symptomatic. Went for a chest X-ray immediately, won’t get the results back until Monday. I feel like I am having a reaction to the test. Could this be possible? Does anyone have experience with the TB test and Scleroderma? I am kicking myself; I should have done my homework first!!!!!

Thanks for your help,

Seton

#2 Snowbird

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Posted 08 November 2009 - 12:18 PM

Sorry Seton, I have no idea if that could be possible but I'm sure someone who does will chime in shortly? Hope you're feeling ok now?
Sending good wishes your way!

#3 Jeannie McClelland

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Posted 08 November 2009 - 01:11 PM

Hi Seton,I googled TB skin test side effects and it seems that people who are sensitive to PPD (Purified Protein Derivative, the material that is used in the test) may may experience fever, swollen glands in their arms or underarms, skin rashes, and/or ulcers at the site of skin testing, but these are supposed to be extremely rare. I'd report it to my doctor if I were you.How are you otherwise? I hope everything is going well and the chest x-ray doesn't reveal any problems. You'll let us know the results, won't you?Warmest wishes,
Jeannie McClelland
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#4 summer

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Posted 08 November 2009 - 05:29 PM

I had the TB test nearly 20 years ago, I as well had a positive result.
My chest xray was normal, but was told by the doctor to never have
another TB test again, as I reacted very badly with the raised lump.

I have only been diagnosed with Limited/Crest for 2 1/2 years ago.

Summer

#5 dustygal

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Posted 08 November 2009 - 06:18 PM

Hi, Seton,

If you felt sick immediately afterward, it might be an allergic reaction to the PPD test itself rather than true tuberculosis. This happened to me a few years back. My whole arm swelled right away after the test, but didn't look too bad after 72 hours. I had to see specialists and was briefly kept home (because I was coughing) but eventually it was determined that it was an allergic reaction. There is a blood test which can help differentiate an allergic from a true reaction, called the TB Quantiferon gold. I now get that blood test annually. It is more expensive than the skin test, which is why it is not used more often.

If your reaction was just local at the site of the injection (a bump or swelling about the size of a dime to a quarter) and was still there 48-72 hours later, you probably have latent tuberculosis. If you have symptoms or your chest x-ray shows active disease, that is called active tuberculosis. Depending on your age and the size of the reaction, your doctor may recommend several months of antibiotic treatment to keep you from becoming ill.

Hope this info helps, good luck, and hope you feel better soon!

#6 Seton

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Posted 09 November 2009 - 07:31 AM

Thanks so much for all the help. I am so thankful for this group because I always feel heard and understood and there is no amount of medicine for that peace of mind. My chest x-ray came back clear. It turns out I have latent TB, which is inactive TB that could become active if the immune system is further compromised. I am going to take your advice and call my doctor and now see how to proceed. Thanks again for all the help:)

Seton

#7 Jeannie McClelland

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Posted 09 November 2009 - 11:16 AM

Hi Seton,

Good to hear your chest x-ray was clear!

Has your doctor given you any thoughts on how to proceed in order to keep from suppressing your immune system too far?

Warm hugs,
Jeannie McClelland
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#8 Seton

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Posted 09 November 2009 - 02:34 PM

Jeannie,

I am still not in the Scleroderma groove. I guess denial is a powerful unuseful tool. I called the rheumatologist, not knowing who to call, and she said I would need to call my general practitioner and go from there. She said the protocol has changed; they used to treat at 35 (whatever that means) but they may want to treat me for the inactive bacteria to avoid my immune system from further decline throwing me into active TB.

Do you know anything about compromised immune systems and inactive TB? Sadly I have never told my general practitioner my diagnoses; I have not had to yet. After reading many stories here, I am concerned he may not be familiar with scleroderma.

Thanks for all the help, I always feel comfortable here. I will keep you posted!

Seton

#9 Jeannie McClelland

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Posted 09 November 2009 - 04:49 PM

Hi Seton,

I don't know much about inactive TB infections (also known as Latent TB Infections) and immuno-compromised individuals, other than it appears the use of many of the immunosuppressant drugs used to treat scleroderma do increase the risk of the TB becoming active.

I had a look for the protocol your rheumatologist mentioned and found a CDC fact sheet that said:

"Candidates for the Treatment of LTBIPersons in the following high-risk groups should be given treatment for LTBI if their reaction to the Mantoux tuberculin skin test is ≥5mm:

HIV-infected persons
Recent contacts of a TB case
Persons with fibrotic changes on chest radiograph consistent with old TB
Patients with organ transplants
Persons who are immunosuppressed for other reasons (e.g., taking the equivalent of >15 mg/day of prednisone for 1 month or longer, taking TNF-a antagonists)"

"The 'emboldening' is mine.

I know that having the diagnosis of scleroderma often appears to cause some doctors to blame everything on the scleroderma, out of a lack of knowledge, but I think you will have to tell your general practitioner about your diagnosis and exactly what medications you are taking. Not telling him could have profoundly negative effects on your care. You would also not want to risk a latent TB infection becoming active because of lack of treatment if your general practitioner doesn't know you are at higher risk - it's very infectious and you've got your family to think about. So, go ahead and tell him of your diagnosis and look at it as an opportunity to educate him about scleroderma. Posted Image

Fingers crossed everything works out OK for you.

Big hugs,
Jeannie McClelland
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#10 Seton

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Posted 10 November 2009 - 03:01 AM

Jeannie,

Thanks! I needed that kick in the pants. I am going to call today....I will keep you posted. I am not a doctor but in hindsight I should have had the blood test, not the TB shot. I feel like my symptoms have become multiplied since I have received the test. Hopefully, I can spare someone else this aggravation.

Lots of hugs,

Seton

#11 bookworm

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Posted 10 November 2009 - 06:39 PM

Hi Seton,

Like Summer, I had a TB skin test years ago that was positive. I was just a child and it happened I had an uncle who had TB. Although I was not around him, my mother went to visit him. Somehow, I guess I was exposed. Anyway, the pediatrician did an x-ray or whatever they did to make sure it wasn't active TB and it wasn't, so that was that.

After the first skin test was positive, but I didn't have active TB, all went well until years later I had another skin test. The site of the test swelled up the size of a silver dollar and was red and puffy. The doctor who had given the test told me I shouldn't have had the test -- once positive, always positive, he said. He added that each reaction, after the first, would be worse than the last. Needless to say, I've never had another one. This was at least 40 years ago and I've never had TB, but I'm glad you all brought up the subject of a compromised immune system. I hadn't thought about that opening the door to TB, although I should have.

Mary in Texas

#12 Seton

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Posted 11 November 2009 - 04:41 PM

Mary in Texas,

You information is consistent with what the doctors are telling me. I went to the general practitioner yesterday and he was surprised my Rheumatologist pushed this issue back to him. He suggested that I call the Scleroderma Clinic at Hopkins and ask if Scleroderma can cause a false positive to TB. If the answer is No he is suggested that I ask them another question. He wanted to know if INH therapy (treatment for TB) would be effective in patients greater than one year exposed. If yes he suggests I start therapy, honestly, I am just frozen with massive information swimming around my brain. I am dragging my feet, but then he painted a very clear picture of the alternative. He said imagine becoming active with TB, not only will you be in isolation for 8 weeks heavily medicated you will have already infected the ones you love…I know cheery thought! I am going to call Hopkins this week and I will keep you posted.

One more thing he said if you have a false positive to TB DO NOT go on any immunosuppressant drugs , it can activate inactive TB.

Thanks for all the help and support,

Seton

#13 dustygal

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Posted 11 November 2009 - 07:02 PM

Dear Seton,

Boy, it sounds like you are getting a bit yanked around! I am sorry to hear that your doctors are uncertain of what to do with you! :wacko:

However, here's my two cents for today:
I and many others taking immunosuppressive therapy have to get TB tests annually. I do not believe that scleroderma causes a false positive test result. However, there are things that CAN cause a false positive, including prior BCG vaccination. In these cases, the QuantiFERON Gold TB test can be done. It is a simple blood test. If your doctor is worried about a false positive, this blood test can help.

I also am not sure that a Scleroderma Clinic will have all the answers for you. While TB testing is done in scleroderma patients (because of the treatment we receive and the lung disease associated with scleroderma), as you are discovering many doctors who are fabulous with autoimmune diseases are not expert in tuberculosis treatment. Treatment guidelines for tuberculosis depend on many factors, including your health, your age, and so forth. The specialist you may want to speak with about your situation is an INFECTIOUS DISEASES specialist. So, if you don't find what you need at the Scleroderma Clinic, do not lose hope. An infectious diseases physician will surely know just what you need to do next.

Also, to clarify your last line... I am sure that you meant "if you have a positive TB do not go on any immunosuppressant drugs..." If your test is determined to be FALSE positive (as mine was) then you should be okay. Only a TRUE positive result indicates latent TB.

You can find all sorts of information at the Centers for Disease Control website. They are the US national health resource. They explain latent and active TB, treatment recommendations, and even that blood test I mentioned above.

Good luck! Hope this helps!

Dusty

#14 Seton

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Posted 13 November 2009 - 08:34 AM

Dusty,

You are right, I called an infectious disease doctor he could not see me until holiday unless my doctor called him with a request. Anyway both doctors talked and they are in agreement I will need INH therapy. I will meet with the new doctor and make my final decision soon. Thanks for your help…I am scared I am not sure how the medicine will affect my daily life. Once I start he said I will have to be committed for six months and I could get hepatitis but as soon as the medicine stopped that would go away.

Do you know anyone who has had this type of therapy? I would love to ask them questions.

Thanks for all your help,

Seton

#15 Eos

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Posted 26 November 2009 - 02:50 PM

Hi,

Sorry to hear you had a reaction to the TB test. I am getting it every year, for work requirement and I have systemic sclero. I never had a reaction to it. Is it possible you were vaccinated or exposed to it before?

Hope it all works out for you.

#16 Seton

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Posted 29 November 2009 - 11:09 AM

Turns out I must have been exposed to the TB virus....big bummer. I went to see an infectious disease doctor at Union Memorial, Dr. Edar. He recommends I start taking the antibiotic called isoniazid (INH) for the recommended nine months. Along with that I take Vitamin B6, to avoid liver damage side effects. So far so good, I thought I would get sick on the stomach, but have not experienced any side effects in the two weeks I have been on the medication.Hopefully I will continue to be fine, with age the risk for hepatitis increases.

Thanks for your post,

Seton

#17 Jeannie McClelland

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Posted 29 November 2009 - 03:15 PM

Hi Seton,

Hmmm, you are just having all kinds of fun, aren't you? Better safe than sorry, right? I'll keep you in my thoughts and hope everything goes smoothly for the 9-months of treatment.

Warmest hugs,
Jeannie McClelland
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