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TB is curable
– information booklet about tuberculosis for people living with HIV
Preface
HIV and TB affect many people worldwide. The twin
epidemics of the two diseases are pervasive in many
parts of the world, including the Russian Federation.
There is a need for more information, a need for
knowledge about the two diseases - both among the
general population and among HIV and TB patients.
Combating TB and securing long and healthy lives
for those affected with HIV is possible. People need to
know this, and we all have to take responsibility and
contribute to this global fight.
Knowledge is power. We hope this booklet will
empower people living with HIV.
Remember this: TB is curable and preventable, and
HIV-infection is treatable.
What you need to know about HIV and TB
TB is curable, even if you have HIV!
If you follow the advice of your doctor or health worker and take your
medication regularly you will be cured of tuberculosis.
If you live positively, take care of your health, follow up with your tests, take
your medication as prescribed you will live a full life, just as those who are
HIV negative.
TB and HIV are linked but they are two different diseases. TB is caused by
bacteria spread through air. HIV-infection is caused by a virus spread mainly
through unprotected sex and infected blood.
TB can be prevented and treated. It can be fully cured with medicines. HIV
can be prevented and controlled with medicines, but there is no functional
cure for HIV.
If you have HIV you are at higher risk of getting TB. When you have HIV
your immune system is weaker, and your body has difficulty warding off
other illnesses.
Therefore, if you have HIV you can more easily get TB than people who do
not have HIV.
Among people living with HIV, tuberculosis:
• is harder to diagnose
• progresses faster
• is more likely to be fatal if undiagnosed or left untreated
• can sometimes spread to other areas of the body (extra-pulmonary TB)
• is more likely to return after being successfully treated
TB-strains that are drug-resistant are even harder to treat, but it is possible,
even though it takes longer to cure.
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Dear patient!
This booklet is especially tailored for people living with HIV in the
North West Russia who want to learn more about TB. Here you will find
information about TB and HIV, the link between TB and HIV and how to
cope with two diseases.
Research is constantly on going to find better diagnostic and treatment tools,
better medicines and treatment regimens for both diseases. In this booklet,
we therefore try to avoid mentioning names of specific medicines.
If you want to learn even more about TB, you should read the patient
friendly booklet «You will be cured of TB» or «Preventative TB treatment».
You can also read more on the web site of WHO1 or Stop TB partnership2.
If you want more in-depth knowledge on HIV and AIDS, you should visit
the website http://unaids.org/ru/ or http://вич.рф.
This booklet has been developed jointly by health care workers of the
Arkhangelsk Clinical Centre for Prevention and Control of AIDS and
Infectious Diseases, Phthisiopulmonology Department of the North State
Medical University, the Easy Breathing Charity Fund and LHL International
Tuberculosis Foundation. Funding has been granted by the Norwegian
Ministry of Health and Social Services.
In the process we asked people living
with HIV what they would like to
know about tuberculosis. Their input
has been instrumental in defining
the content of the booklet. Together
we have found answers to the most
common questions. This booklet
is a result of this process and has
been designed to meet the need for
information about TB among HIV
positive people.
To develop this booklet, we talked to
people living with HIV
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World Health Organization (http://www.who.int/topics/tuberculosis/ru/)
A global partnership to combat TB (http://www.stoptb.org)
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Content
How can you use this booklet?
Chapter 1: Basic facts about HIV
What is HIV?
What is AIDS?
How is HIV transmitted?
What is the connection between HIV-infection and tuberculosis?
Questions from patients:
Chapter 2: Facts about TB
What is TB?
What is extrapulmonary TB?
How is TB spread?
Questions from patients:
How do you know you have TB? What are the symptoms?
What is latent TB infection?
Questions from patients:
How is TB detected and diagnosed?
How is TB treated?
Treatment with both TB medication and Antiretroviral Therapy (ART)
Immune Reconstitution Inflammatory Syndrome (IRIS)
Questions from patients:
Most common side effects of treatment
Questions from patients:
TB in children
Chapter 3: Drug resistant tuberculosis (also called MDR and XDR TB)
How is resistant TB treated?
Questions from patients:
Chapter 4: How to live positively
Share your experience
Patient stories
Useful links to more information
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How can you use this booklet?
Read this booklet to learn the main facts about tuberculosis and HIV and
how to cope with these two diseases, and with other difficulties related to
them. You can give this booklet to other people and discuss it with health
care workers, your friends, family and other patients.
When you learn what tuberculosis and HIV-infection are, the link between
them, how they are spread and how they are treated, you will feel safer. Also
you will be able to discuss different questions related to these two diseases
with other people. When people around you learn more about HIV and
tuberculosis, they will also feel safer; they will also be friendlier towards
people with tuberculosis or HIV and will support them.
You can read this booklet alone
or with a health care worker.
This is how the booklet is designed:
− In the beginning of each section you will find facts and information
− In the end of each section there are questions from patients and answers to them
If you do not understand something or want to learn more, contact your
doctor or nurse.
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Chapter 1: Basic facts about HIV
What is HIV?
HIV stands for Human Immunodeficiency Virus. If you get HIV it means
that you are infected with a virus that attacks your body defense system, also
called the immune system. Usually, our immune system manages to fight
different viruses, for instance, the flu. However, the immune system is not
able to get rid of the HIV.
What is AIDS?
AIDS is the late stage of HIV infection. It appears when a person’s defense
system is severely damaged and has difficulty fighting diseases. Before there
were any effective medicines, people with HIV could develop AIDS in just a
few years. Today, people can live much longer - decades - with HIV and they
do not develop AIDS. This is because of the continuous development of new
and improved medications.
How is HIV transmitted?
HIV lives in blood and other body fluids that contain blood or white blood
cells.
People can get HIV through:
•Unprotected sex with an HIV-infected person. This includes both
vaginal and anal intercourse.
•Sharing of HIV infected blood, for instance, through needles or
other sharp objects
•Pregnancy, childbirth, and/or breastfeeding, where the virus is
passed from mother to a child.
HIV is not transmitted through casual contact (that is, where no blood or
body fluids are involved). It is safe to hug and kiss, sleep and eat together.
Use a condom every time you have sex.
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What is the connection between HIV-infection and
tuberculosis?
As far as an HIV-infected person’s immunity gets weaker, he or she may get
a number of diseases, which are closely connected with a weakened immune
system. In most cases these are infectious diseases, which can affect any part
of the human body.
HIV-infection also increases the risk of developing tuberculosis. Tuberculosis
may develop at any stage of HIV. When HIV progresses, the number of CD-4
lymphocytes drops, These lymphocytes play an important role in the fight
against tuberculosis mycobacteria, and the patient may develop tuberulosis.
Often symptoms of tuberculosis may not be evident, that is why twice a year
it is necessary to take tests for tuberculosis, namely:
− chest x-ray (fluorography);
− sputum test; coughing up phlegm (if a person develops cough).
HIV-infected people must closely watch over their health, and once any
symptoms suggestive of tuberculosis appear (cough, fever, loss of weight,
sweating at night), they should contact their doctor.
Questions from patients:
- How long can an HIV-positive patient live?
Nowadays with an access to all necessary treatment, the average
life-expectancy of an HIV-positive patient is the same as one
who is HIV-negative.
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- Is the HIV- diagnosis reported to the job place?
According to the Article 13 of the Federal Law “On the
Fundamentals of Health Protection of Citizens in the Russian
Federation” 323-FZ dated November 21, 2011:
• Information about the diagnosis of a citizen is confidential.
• Disclosure of confidential information is prohibited.
When it comes to TB diagnosis there is an exception from this law. It is
obligatory to inform the workplace if you get sick from TB. It is necessary
as well to examine all the persons who had contacts with the TB patients in
order to prevent the disease or to detect it early and do not let it spread onto
the society.
- Is an HIV-positive woman able to give birth to a healthy child?
Yes, it is possible. If all the recommendations of the health personnel on
how to prevent mother to child transmission are followed (a three-stage
chemoprevention and no breastfeeding), the possibility of virus transition to
the child is very low, about 1-2%.
- Why is an HIV-positive supposed to undergo the tuberculosis
examination?
Due to the increased risk of developing tuberculosis among ­
people living with HIV, it is necessary to undergo screening
twice a year. In this way, TB can be detected and treated early.
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- What is CD4 lymphocytes/CD4 count?
These are the white blood cells of the immune system that are in
charge of fighting infections. Sometimes they are called T-cells
or T helper cells. An HIV-negative person normally has between
450-1600 CD4-lymphocites.In some cases the number may
fluctuate, and women tend to have higher CD4 level than men. If an HIVpositive does not receive treatment, the CD-4 level falls. Thus immune system
capacities start getting weaker. It is therefore necessary to monitor the CD-4
count.
- What is the epidemiological situation of tuberculosis and
HIV-infection in the world, in Russia and the region, and its
tendencies?
By 2015, 35 million people worldwide are living with HIV. The
number of new HIV cases and the number of AIDS related deaths
in Russia continue to grow. The HIV infection epidemic situation
continues to become worse in the country. The HIV epidemic is spreading
from high-risk groups to the general population. The number of patients in
need of ART is increasing.
Worldwide, tuberculosis accounts for one-quarter of AIDS deaths and is
one of the most common causes of morbidity in people living with HIV. At
least one-third of the approximately 35 million people currently infected
with HIV, are also infected with TB. The twin epidemics of TB and HIV are
particularly pervasive in Africa, where HIV has been the most important risk
factor in the increasing incidence of TB over the last 10 years. Eastern Europe
countries have the fastest growing HIV epidemic in the world, a factor
further exacerbating the expanding problem of the multidrug-resistant TB
(MDR-TB) epidemic in these regions.
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Chapter 2: Facts about TB
“I think it is important that people know, what tuberculosis is, what kind of
symptoms it has and how it is spread. Many people are afraid of tuberculosis,
because they know too little about it. To be informed about your disease is the
best way to cope with it. Knowledge is power.”
Man, 55 years old
What is TB?
TB is a disease that is caused by TB bacteria. Bacteria are small, invisible
organisms which are found everywhere, including inside people’s bodies.
Most bacteria are harmless, and even useful. But some bacteria are harmful
and may cause diseases that we call infections. The bacteria that can cause
TB are bacteria of this kind. If the bacteria attach themselves to an area in the
body and multiply, and the body doesn’t manage to defend itself, you can get
the TB disease.
Generally, it is most common to get TB in the lungs, but you can also get it in
other parts of the body (extrapulmonary TB).
What is extrapulmonary TB?
TB in other parts of the body, for instance in the bones, the lymph nodes,
or the brain, is called extrapulmonary TB. In combination with HIV, TB
is able to spread from the lungs through the body more easily. Therefore,
extrapulmonary TB is common among people living with HIV.
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Some of the most common forms of extrapulmonary TB are:
Lymph node TB: This is the most common form of extrapulmonary TB.
TB bacteria often infect the lymph nodes which then swell up and the skin
around them becomes inflamed. Any lymph node in the body can become
infected. This is often seen in the lymph nodes around the neck or under the
arm. For diagnosis, a sample is taken of the infected node and tested for TB
bacteria. This means pricking the lymph node with a syringe and extracting
some cells for examination.
TB of the bone and the joint: Once the TB bacteria affect the bones or joints,
there is pain and swelling of the affected area. Very often people don’t think
that it is caused by TB, but rather by an accident, or another injury.
Extrapulmonary TB is diagnosed in TB dispensary by means of special
observation methods, for example through clinical assessments, x-ray or
biopsy (extracting a sample from the affected organ or body part).
How is TB spread?
TB is spread through the air by small droplets (which you cannot see). The
droplets come from the nose and mouth and get into the air when this person
talks, coughs or sneezes. The TB bacteria are inside some of these droplets.
When other persons breathe in this air, some droplets with TB bacteria can
enter their body and reach their lungs.
Tuberculosis is spread when a person breathes in bacteria from the air.
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It is only lung TB that is infectious,
not extrapulmonary TB.
People who have had close contact over some time with someone with infectious
lung TB who has not yet started treatment can get the disease. The TB bacteria
are not spread easily, so infections generally occur between persons who live,
or spend a lot of time, together
Anyone can be infected with tuberculosis!
Questions from patients:
- Not everybody contacting with a TB patient gets infected.
Why does it happen?
Most often you get infected when you have close contact over
time with someone with lung TB. But even if you breathe in
the droplets with the bacteria, the bacteria might not be able to
reach the lungs or the immune system is able to kill the bacteria
immediately. So not everyone that has close contact with TB
patients gets infected.
-Why did I become infected with tuberculosis despite having no
contacts with infected people?
You cannot always know who you got the infection from. Maybe
that other person also never knew he or she had TB. Remember
it can take years after infection with the TB bacteria before the
disease breaks out. Maybe it happened when you were a child?
-Are there any inheritance possibilities of HIV and tuberculosis?
No, neither TB nor HIV can be inherited. They are contagious
diseases spread through the air (TB) or through blood or body
fluids (HIV).
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-Why are the family members and the close contacts of TB patients
supposed to be observed for one or two years after their first examination?
If family members or close contacts got infected and did not get sick
immediately it is because the TB bacteria may sleep at first, this is called
latent TB infection.
The likelihood of getting sick from TB is higher the first years after infection
has taken place. That is why family members and close contacts should be
observed once every six months for one or two years.
How do you know you have TB? What are the symptoms?
Common signs of lung TB are:
• Persistent cough for more than 2-3 weeks (sometimes
coughing up phlegm or
blood);
• Pain in the chest.
Loss of appetite
Weight loss
Night sweats
Persistent cough for
more than three weeks
Fever over a period
of time
Weakness, fatigue and
shortness of breath
Other common signs of both lung
TB and extrapulmonary TB (TB
in other parts of the body) are:
• Loss of appetite
• Weight loss
• Feeling weak and tired
• Having fever over some period
of time
• Night sweats
• Swelling on the neck, under
the arms, or in the groin
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These symptoms are also common signs of some other diseases. So, to be sure
that it is TB, you have to take different tests. Someone who has one or more
of these symptoms should go and see a doctor!
People living with HIV may have some of these classic symptoms of TB,
but very often they have few symptoms or less specific ones. They might not
cough even if they have pulmonary TB disease.
Sometimes tuberculosis develops without any symptoms, this is called ­
sub-clinical TB.
What is latent TB infection?
Even if you are infected with the TB bacteria, you will not necessarily get
sick. When the TB bacteria enter a human body, they encounter the body’s
immune system, which in the majority of cases does not allow tuberculosis to
develop.
So for most people who are infected with TB bacteria, the bacteria remain
latent, ”sleeping” in the body. As long as the bacteria are sleeping, you do not
become ill. The immune system ensures that the bacteria do not ”wake up”
so that you remain well. You can have TB bacteria in the body for your entire
life without becoming ill. Latent TB is not contagious.
Being infected with TB bacteria
without being ill is known as having
latent tuberculosis infection
A very large number of people have sleeping TB bacteria in the body. The
World Health Organization estimates that approximately 1/3 of the world’s
population have such bacteria. Only a few of these – approximately one out of
10 – will become ill. The risk of developing TB differs. People with weakened
immune system have a much greater risk of falling ill from TB. A person
living with HIV is about 26 to 31 times more likely to develop active TB.
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HIV is not the only risk factor for developing TB. Reduced immunity
might also be due to other diseases such as diabetes, or conditions such as
stress, poor nutrition, alcohol and drug consumption or other reasons.
A person with latent tuberculosis is not sick from
tuberculosis, and will not infect others.
If you have latent TB infection you can get preventive treatment. This
treatment will kill the sleeping bacteria in your body. Preventative TB
treatment entails taking one or two TB drugs over a period of time. The
dosage and the length of treatment course differ. People living with HIV
are encouraged to take such treatment.
Questions from patients:
- For how long can the TB bacteria «sleep»?
The TB bacteria might never «wake up». Most people with
latent TB infection never get sick from TB. Weakened immune
system increases the chances of the bacteria waking up.
- Who should take preventative TB treatment, and why?
Because of their reduced immunity, people living with HIV are
advised to undergo prevention treatment courses.
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How is TB detected and diagnosed?
A skin test (Mantoux or Diaskin test), or a blood test can show if a person
has been infected with the TB bacteria. But these tests cannot distinguish
between latent TB infection or being sick with TB.
To diagnose lung TB there is a need for sputum tests and a chest X-ray.
A sputum test means coughing up phlegm into a small cup or container.
Different methods can then be used to look for TB bacteria in the sputum; for
example Smear Microscopy or Gene Xpert. Once the TB bacteria have been
identified in the sputum the laboratory will perform a drug sensitivity test.
TB is more difficult to diagnose in people living with HIV and this can lead
to delays in getting the TB diagnosis. A challenge for HIV positive people
is that the TB bacteria can be more difficult to identify in the sputum test
because the sputum of an HIV-positive person usually contains a lower
concentration of TB bacteria. HIV positive people might also have a normal
chest X-ray, even if they have pulmonary TB. If so, the diagnosis is often
based on a clinical assessment
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How is TB treated?
«First when they told me I had tuberculosis I was scared. After having
conversations with medical personnel about the diseases (TB and HIV),
prognosis and treatment possibilities, I became calmer.»
Woman, 27 years old
TB is treated with a combination of different kinds of TB drugs, mostly,
tablets. Treatment course and observation are free of charge. Most patients
have to take drugs every day for six months, but sometimes the treatment
is longer. If you have MDR TB (bacteria are resistant to more than one
primary drug), the treatment can be as much as 20 months.
It is very important that you take medicines for as long as the doctor
tells you to. If you stop taking medicines to early, you may get sick again.
The TB bacteria can also become resistant, and, as a result, the drugs
may then work less well if you have to start taking it again after having
stopped too early.
In most of the cases the patients start treatment in hospital and then
continue at home. If you have a contagious form of tuberculosis, you will
have to stay in the in-patient department of the dispensary, until you are
not infectious any more. This often takes about 1-3 months, but can be
longer. In the hospital the health workers can closely monitor how you
tolerate the medication, ensure that the medicines are effective and that you
are feeling better. You as a patient have a right for support and consultations
during the whole treatment period. Your doctor and other health care
workers can assist you in different ways. Your health and your well-being is
their responsibility too.
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This man has tuberculosis. In the
very beginning of treatment he has to
stay in hospital.
After he has taken the medicines
and received care for some time, his
condition improved…
…and he could continue treatment at
home. Every day a health care worker
helps him to take his medicines until he
is completely well.
The treatment course is finished. He is cured!
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Treatment with both TB medication and Antiretroviral
Therapy (ART)
If a person is HIV positive, getting a TB diagnosis is an indication for
starting ART treatment. Therefore the Russian Ministry of Health
recommends that people living with HIV diagnosed with TB should start
ART irrespective of their number of CD4 lymphocytes as soon as 2-4 weeks
after they have started a TB treatment course.
Starting early on ART in HIV-TB co-infected patients reduces mortality
significantly!
Treatment of TB may take longer in people living with HIV, due to the
likelihood of extrapulmonary TB. Even after treatment, they are more
vulnerable to getting TB again.
When TB medication and ART are taken together, there is a need for
carefully monitoring in order to avoid adverse drug interactions and
side effects in patients. The health personnel treating you are responsible
to monitor this, but you also have a very important role in noticing any
changes in your body and report back to the doctor if you experience any
side effects.
If you react to a certain drug or combination of drugs,
your doctor can help to manage unwanted side
effects or change your treatment plan
Immune Reconstitution Inflammatory Syndrome (IRIS)
IRIS is a strong and exaggerated response in the immune system. People
with HIV who have just recently started ART treatment can experience
IRIS. This is because ART strengthens the immune system, and this
strengthening may cause such a response if there any other infections in
the body, for example TB. This means that you might experience new TB
symptoms or symptoms might worsen.
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TB-associated IRIS is usually not dangerous and
will disappear by itself.
Patients who develop IRIS should continue
their ART and TB treatment.
Questions from patients:
- Why do the treatment terms differ from patient to patient?
Medication tolerance may differ. Also the drug susceptibility
of the TB bacteria may be different, so the kind of treatment a
patient is offered should be based on what is effective and on
how the patient’s immunity works.
- Is the drug replacement possible due to bad tolerance?
Both for ART and TB treatment there are options of changing ­
some drugs if the patient is not tolerating them well.
- Why is the antiretroviral therapy supposed to be taken
constantly for many years?
ART does not remove the HIV virus from the blood, but it
helps minimize the amount of the HIV virus in the blood.
Therefore you must use ART for the rest of you life.
- Why are the antituberculosis drugs supposed to be taken
under medical observation even during the dispensary
treatment when the antiretroviral therapy is taken without
the assistance of medical personnel?
Viral load recognition (amount of HIV in blood) allows to monitor the intake
of ART once in three months on a regular basis. ART has less side effects,
involves less pills than TB drugs. Thus a medical worker does not need to
control every medication taking.
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“Supervised treatment” for TB is used to help patients complete the whole
course of treatment, monitor side effects and ensure that they do not develop
resistance to antituberculosis medicines. That is why it is very important, that
a health care worker helps you to take medicines during the whole treatment
period.
- Is HIV resistant towards antiretroviral drugs?
The HIV-virus can also develop resistance to ART, but ART
resistance is not as big a problem as the resistant TB.
- What factors determine the treatment terms?
First a drug sensitivity test is done. If the test shows that the TB bacteria
are sensitive to all the drugs, treatment terms will be 6 months. If the drug
sensitivity test shows that the bacteria are drug-resistant then treatment
terms will increase up to 20 months or more. Treatment terms depend on the
immune system as well. If the immune system is very weak the bacteria may
remain active longer and the treatment must be extended.
- Can I get tuberculosis if I had a BCG vaccination?
Yes, it is possible to get sick with TB even if you have had the BCG vaccination.
BCG, (Bacille Calmette-Guerin) is currently the only vaccine against TB
disease. The BCG vaccination only gives some level of protection, especially for
small children, but does not give full protection. It is important to note that
HIV-positive children should not be vaccinated with the BCG as it can make
them seriously sick.
- Can I develop TB disease again?
Yes, it can happen. This is called a relapse of tuberculosis or
recurrence: When patients who have previously been treated for
TB, were declared cured or treatment completed at the end of their
treatment, and are now diagnosed with TB again. This can occur
either because the first TB was not sufficiently treated or it could be
caused by a new TB infection.
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- Why can the relapse happen? Does it prove that tuberculosis
is incurable?
TB is curable, but in some cases the drugs cannot achieve
complete eradication of TB bacteria and some “sleeping”
bacteria may still be present in your body after completion of the treatment.
These bacteria might wake up and cause TB disease again. Relapse can also
occur if, a cured person is infected with TB again, for the second time, from
another person with active TB.
- How often do the relapses occur?
Relapse may occur in 5-10% of all cases.
Most common side effects of treatment
«The HIV diagnose came before TB, the ART helped settle the situation down.
Getting TB was stressful and the side effects were hard at first; liver disorder
and vertigo, but this was corrected and TB cured. I now keep a healthy lifestyle;
adequate nutrition, rest, no bad habits, proper social life.»
Man, 34 (HIV-positive, cured of TB)
Medicines can sometimes cause problems in your body – these are called
side effects.
People react differently to medicines. Some patients don’t experience any side
effects, and some do. Generally, side effects get milder or disappear when the
body gets used to the medicines, usually about four weeks.
Serious side effects are rare but can occur. Therefore it is important that
you inform your doctor or the nurse if you experience any problems or side
effects.
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If the white part of your eye becomes yellow, if you have serious stomach
pains, skin rashes over big parts of your body or if you experience
problems with you eyesight – see your doctor immediately
Most side effects are mild and even if they are unpleasant and annoying, they
are not dangerous.
The most common side effects of TB medicines are:
• Nausea and vomiting
• Digestion problems – hard stools or loose stools
• Itching and rashes
• Joint pain and other pain and swelling
• Red urine
The most common side effects of ART are:
• Nausea and vomiting
• Loose stools
• Rashes
• Changes in blood tests
• Yellowing of eyes
Nausea and vomiting
Many medicines might cause nausea and vomiting. If you
have nausea, it can help if you eat something small, like
a biscuit, a piece of fruit or some natural yoghurt. It is
important to continue to eat regularly; this will help you to
recover faster, and it can also help prevent or relieve nausea.
An empty stomach might increase the nausea. If you are still
bothered with severe nausea, your doctor can prescribe you
the medicines to relieve it.
Drowsiness and fatigue
Drowsiness and fatigue can be both a symptom of your
disease and a side effect of the medication. So it is very
important you get enough rest. When you rest, your body
fights the disease better.
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Loss of appetite, weight loss
You may not feel hungry because of the disease or due
to the medication. It is very important that you continue
to eat; try to eat well to help your body fight with the
disease. A weak and exhausted body does not have
strength to fight the disease.
Itching and rashes
Some of the patients face itching and rashes. Itching is
the result of the allergy to drugs. If itching and rashes
do not pass off, please contact your doctor or nurse.
The doctor may prescribe you some medicines to
reduce itching.
Red urine
When you take antituberculosis medicines all your
body fluids can become red, pink or orange. This
is not dangerous; the red colouring is not caused
by blood. It is because of the red coloring that the
medicines contain.
Some tuberculosis medicines can cause red urine.
Joint pain, headeaches and other pain in the body
Some patients experience joint pain, headaches or other
pain in the body. If you experience this too, talk to your
doctor. The doctor will prescribe you some pain-killers.
Swollen feet may also occur. When you sit or lie down,
try to put your feet up high, for example, on a pillow; it
can also help if you wrap a wet towel around your legs.
Light physical exercises can also help.
Constipation and loose stools
The antibiotics used to treat TB, besides killing
tuberculosis bacteria, also affect normal intestinal
bacteria. Because of this you can get digestion problems.
Some patients have constipation, others – loose stools or
diarreah.
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Advice for patients on how to relieve constipation:
-
-
-
-
-
-
Eat fruit and vegetables;
Eat dried fruit, especially raisins and prunes;
Eat soaked flax seeds;
Drink more water;
Do light physical exercises;
Consult the doctor in case of long-term constipation.
Advice for patients on how to prevent loose stools:
- Don’t drink milk;
- Don’t drink beverages which contain a lot of sugar;
- Cut down on vegetables and fruits consumption;
- Eat mainly dry toasts, low-fat meat or fish, rice, fasting soup, baked
apples, fresh cottage cheese, strong tea, jelly drinks;
- Eat bird cherries and blueberries;
- Take anti-diarrhea medicines.
If the side effects become serious or unbearable,
there is often the possibility
to change the treatment regimen
Questions from patients:
- Some patients face long-term side effects while taking the
treatment. Do they remain after the treatment is finished?
For example, liver functional test deviations..
Most side effects will disappear when treatment is finished. There are a few
exceptions, especially when it comes to treatment of resistant TB. Some
patients have experienced partial or complete hearing loss. Such side effects
may be permanent. That is why close monitoring by health personnel is so
important.
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- What side effects take place when antituberculosis and
antiretroviral drugs are taken together?
You do not necessarily experience more or different kinds of
side effect because these drugs are taken together. Side effects
are individual so it is not possible to predict how someone will react to the
drugs. A patient should therefore follow all the medical reccomendations and
at the same time monitor and report changes in his or her state to the health
personnel.
TB in children
Children are more vulnerable than adults to TB disease. They develop TB
more easily and can get more seriously ill from the disease. The disease can
also progress more quickly in children. Especially very young children,
HIV+ children or severely malnurished children have increased risk of falling
ill. If children are close contacts of an infectious TB patient they are often put
on preventative treatment for TB immediately.
TB in children can be more difficult to diagnose. This is because it can be
difficult for children to produce a sputum sample. Also their symptoms
might be more diffuse. Children might not have the classical TB symptoms
as mentioned above, often only vague and non-specific symptoms like feeling
tired and weak, weight loss or not gaining weight and lack of appetite.
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Chapter 3: Drug resistant tuberculosis
(also called MDR and XDR TB)
What is resistant TB?
Resistant TB is TB that is caused by TB bacteria which survive while treated
with the ordinary TB medicines. Resistant TB spreads the same way as other
TB - from a sick person by droplets in the air.
People get cured from resistant TB, but it takes longer. To get cured from
resistant TB, you need other medicines than the medicines used for ordinary
TB. Because it takes longer for the medicine to kill these bacteria, patients
have to stay on treatment for up to 18 or 24 months. Unfortunately, the
medicines that are used against resistant TB can have many unpleasant, strong
side effects on the body.
MDR-TB (multi-drug resistant TB) is TB that is resistant to the two most
common TB drugs: isoniazid and rifampicin. XDR-TB (extensively drug
resistant TB) is in addition to being resistant to the two most common drugs,
also resistant to any of the second-line injectable used to treat MDR-TB.
How is resistant TB treated?
«I have revised my life again, and I realized that things which do not kill us,
makes us stronger».
Man, 46 year old
First of all, a special laboratory test, drug susceptebility test, is done to find
out, what mediactions your tuberculosis bacteria are susceptible and resistant
to. Based on this result, an individual treatment regimen is identified.
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MDR-TB treatment consists of several mediactions and is normally treated
for about two years. Unfortunately, some of the medications can be quite
toxic for the body. In addition to the side effects mentioned earlier (like
stomach problems, nausea, joint pains or hearing loss), some psychiatric
problems can occur (like anxiety, paranoia, depression) and more seldom
epileptic seizures.
If you experience problems with your hearing it is important to alert your
doctor immediately as this may lead to permanent hearing loss if not dealt
with correctly.
It is important that you take all the medicines, which your doctor prescribed.
As taking the medicines does not come naturally to your body, it takes time
until the body gets used to them. So some side effects will disappear after a
while and some might get milder. If this is not the case, there can be some
medication that can reduce side effects. And if nothing else works, it is
sometimes possible to change the treatment regimen.
Although sometimes being on ART at the same time as taking MDR
treatment increases the risk of drug intolerance and side effects, it is not a
reason to delay MDR TB treatment. If a patient is not on ART, it is important
to start ART co-treatment as soon as MDR-TB treatment is tolerated. But
treating MDR-TB and HIV at the same time is clearly more challenging than
with susceptible TB.
29
Resistant TB is a world-wide problem and it is increasing. According to the
WHO report in 2014, 19% of all new TB cases and 49% of relapse cases in
Russia were MDR TB.
Multidrug resistant TB can be treated.
Even if you are HIV-positive
Questions from patients:
- How can one get drug resistant TB?
If you have close contact with an infectious MDR TB patient.
Some patients may interrupt their treatment of susceptible
tuberculosis, which also causes the development of MDR TB in
these patients, because bacteria are able to reproduce and change while out of
treatment
Lack of supervision by the health care worker or a volunteer increases the risk
of MDR TB development.
- What is MDR TB?
MDR stands for «multi-drug-resistant» TB and is a form of
bacteria that is resistant to the two most common TB drugs:
Isoniazid and rifamphicin. This means that these drugs are
not able to kill the TB bacteria. Treatment is therefore more
complicated and takes longer, but you will most likely be cured
after 2 years if you have completed your treatment.
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Chapter 4: How to live positively
«I was afraid of negative attitudes, but I decided to tell my family and friends
about the tuberculosis examination because I was also afraid I had infected
them. Luckily, there was no negative reaction».
Woman, 27 years old
Some patients are afraid to talk to
others about their disease.
Both HIV and TB are surrounded by misconception and fear, which leads to
stigma. Some would even say that with TB and HIV there is double stigma.
Usually, the reason people discriminate or stigmatize is that they lack
knowledge and that they are also afraid, afraid of being infected with TB.
Many patients therefore find it difficult or are afraid to talk about their
disease, and hide their disease from other people. They usually hide it
because they fear that when people learn, that they have HIV or TB, they will
stay away from them and refuse to talk to them. Some patients are abandoned
by their friends and relatives, others by their husband or wife. Some people
are aggressive towards tuberculosis patients or people living with HIV and
refuse to talk to them. For someone who is fighting a disease, it is terrible to
experience this.
31
Therefore, learn as much as you can about the diseases so that you can
explain to your friends and family. There is no need for people around you to
be afraid because of misconceptions and lack of knowledge.
Try and live a healthy life, take care of yourself and be as active as you
can. Fresh air, nutritional food, enough rest, medication as prescribed and
activities that motivate you can do wonders.
Share your experience
Many patients don’t talk to others about their disease, as they are very often
afraid, that others will be aggressive, afraid, or judge them negatively. It is
natural to try to protect oneself from such negative reactions. Still, we have
examples that discussing your disease openly brings a lot of benefits. Being
open about your status can get support from the people around you. If
nobody knows you are sick, nobody will know that you need support. And
openness can reduce fear: when people are well informed they will feel safe
and will no longer be afraid. In this way, openness can counteract fear and
loneliness.
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Patient stories
Patients shared their stories, here are a few testimonies.
I found out that I am HIV- positive 6 years ago. When I was first told my
diagnosis I first became shocked, then depressed.
Thanks to my relatives, especially my mom, who has supported me in
difficult moments, even at night. When you can call your parent any time,
it brings such a strong psychological relief. Later I started searching for
people with the same situation for socializing, information exchange and
experience of living with HIV.
Then I launched my own web project. It was my personal on-line journal
of thoughts and emotions, where I was sharing my knowledge and ideas
with other people.. Since that time my life has changed, my life position
and perception of some things have changed as well. I have revised my life
again and I realized that things, which do not kill us, make us stronger.
Now I continue my work as an HIV-activist. I have an opportunity to visit
lots of conferences, trainings, seminars, where I can improve my knowledge
about HIV and share my own experience.
(Man, 30 year old)
33
Once I had a dream, that I was a fish, and I am ripped. I
woke up remembering and understanding that I existed no
more. That day I got the news that I was HIV-positive. Was
that a coincidence? Or destiny? I was desperate, just like that
fish from the dream.
There were a lot of questions in my head. I did not know what would be
tomorrow, and would tomorrow be. The thoughts about my diagnosis
were unbearable.
At home I was looking into the mirror, staring and listening to the beat of
my heart, to my breath. My reflection was an illusion – I neither saw nor
felt myself.
It lasted three months. I realized that I do not want to behave like at the
end of my tether waiting for the doomsday. You live only once. Moreover,
sitting and looking into the mirror is ridiculous, and if you do not stop
– you go insane. Yes, the easiest way is not to have your own way: just
sitting in front of a mirror, living your past. But I do not want to become
the past, the forgotten moment for everybody who loves me.
Am I no longer there? No, I am!
The time was running, the time… started curing me. I realized that there
is a sense to breathe and to live. The sense to live.
Since I was diagnosed with HIV, I got a deeper understanding of many
things with the every new day. Who I am. What I want in this life. What
is essential for me. Who is the most important person for me. What I
want to achieve. What I dream about. What is my present. How I would
like to see my future.
It all becomes much clearer. Suddenly a well-worn phrase that you should
live every day of your life like the last one starts to make sense. Now small
things and other nonsense do not get me rattled. With every new day I
stand stronger and understand better what I struggle for. I am lucky to
have reliable people around me. They create protected space for me, where
I can perceive myself and develop further. I ought to thank them for it.
(Man, 28 year old)
34
Useful links to more information
1. Facts about TB, World Health Organization:
http://www.who.int/mediacentre/factsheets/fs104/ru/
2. Facts about HIV, World Health Organisation:
http://www.who.int/mediacentre/factsheets/fs360/ru/
3. http://spid29.ru/
4. http://www.hivrussia.ru/
5. http://www.o-spide.ru/
6. http://www.spid.ru/
7. http://www.tubunet.ru/
8. http://вич.рф
This booklet has been funded by the Norwegian Ministry of Health and Care Services Illustrations and layout: Horisontdesign.
35
This booklet has been developed jointly by:
ГУЗ АО «Архангельский
клинический
противотуберкулёзный
диспансер»
www.tub-info.ru
ГБУЗ АО «Архангельский
клинический центр по
профилактике и борьбе со
СПИД и ИЗ»
www.spid.1mcg.ru
Благотворительный фонд
«Лёгкое дыхание»
www.tubfund.ru
ГБОУ ВПО «Северный
государственный медицинский
университет»
www.nsmu.ru
Международный фонд по
борьбе с туберкулёзом
LHL International
www.lhl.no/lhl-internasjonal