Hi Roger,
So glad to be of help. It makes me feel like I am doing something with my skills. Let me know if you have any other questions and how her progress is.
take care,
mkh9
Thanks for your reply mkh9,
I am sorry to hear about your mother.
Thank you SO much for taking time out to explain the details of this, it makes me feel a lot more better. Through the duration of the treatment she has not reported diarrhea thankfully and I hope it stays that way.
Despite the steroids masking her symptoms I can only hope that her glands have been able to produce some by now from the tapering allowing her to recover. She has a stepdown to 10mg tomorrow fromt he 20 mg, hopefully it wont make a difference at all :)
Yes she does manage to take care of herself well, she is a housewife and still does her normal tasks such as cooking and going out to buy groceries at times (although me and my brothers ensure that she is not putting herself on a strain these days). So I suppose it is a good sign :)
I do indeed think that the help you have provided me on this forum is amazingly invaluble. I hope the questions I have asked you here and your replies do help a lot of other people considering I looked up this topic but did not find anything but complicated scientific journals that my limited understanding of medicine and human body could not comprehend.
I do hope and pray that your back injury recovers speedily.
Thank you for your amazing help again,
Roger.
Hi Roger,
I'm sorry I meant to write back last night and this website wouldn't open. So as for the antibiotics I think that should keep resistance down unless it was drug resistant to start with which I don't think it was or her TB symptoms wouldn't have gone away. From what you say about your mother having pressure when she swallows, I don't know for sure where the lymph node is but it sounds like it is near the mediastinal lymph nodes and those run near the trachea and down to the breastbone area. If this is where it is located it would cause a lot of pressure and difficulty swallowing. Can she eat soft foods until the lymph nodes go down? If she can tolerate regular food at least you will know why it is uncomfortable. There are lymph nodes near the decending aorta and the hilar area all are sensitive areas. It sounds like the doctor is attempting to taper her off of the steroids. You have to taper since the adrenal glands have to 'learn" to make their own steroid again. It takes a bit of time. Yes steroids could potentially be masking some of the pain or lowering inflammation and thereby masking the pain so to speak. I don't think the steroids are masking the other TB symptoms though. Once she is off the steroid and all drugs for TB then you have to watch to see if the TB to recurs. if it does they would put her back on another round of TB drugs if not that is the what we hope for then she will be in the clear. I don't know how long this would take. The lymph nodes do take time to go down after an infection. The lymph nodes swell because of the infection that is their job. But if she had TB in the lymph node then it would also swell due to the infection itself being in the lymph node (hope that makes sense). So, I hope they go down soon. I think the Rifater or Rafinah could have given her bad side effects and she should have felt better once she got off of them. They can cause low grade fever, stomach pain, loss of appetite, dark urine, clay colored stools, and jaundice, diarrhea,, and abdominal cramps. If she doesn't have diahhrea that is good as a bacteria called Clostridium difficile can take over and cause problems even after being off the drug. So also keep an eye out for diahhrea in the next few months. If she doesn't get this of course that is good, not all people get it. If she does it is treatable with different antibiotics (not TB drugs). But if she does get it she will have to go in right away for stool culture and then antibiotics if she has the secondary infection. I wouldn't worry about it, just keep an eye on her. Is she taking care of herself since she is so young? I know with TB there is a lot of fatigue. Well, hope this helps. As for my background, yes I am or was a microbiologist. I was in the clinical lab for about 10 years then I got into biotech and research for another 10 years. I got injured on the job by repetitive work and got tendonitis in both wrists so I stopped working. I then got a back injury (myofascial pain ) that is taking a long time to go away. So, it is frustrating for me. But it does give me time to help others in a different way. I did work in TB along with the other sections of the lab but we didn't see glandular or Lymph node TB while I there. It is kind of unusual since most TB is in the lungs but of course it can get to different places. Not all clinical microbiologists work in TB. It is really not my specialty, but infectious disease is my interest in general as well as anaerobic bacteriology. FYI, my mother passed away about 19 years ago. She had colon cancer at 68. She had her TB when she was in her twenties before I was born. She lived well with one lung with some issues like not being able to lay on the side with no lung. Thanks for asking.
take care,
mkh9
Thanks for your kind thoughts mkh9,
Yeah she does feel pressure in her chest, i.e. its not a pain as such but when she eats her food she finds that her food gets stuck around her chest as if she just took a real big morsel (but it happens on every morsel), eventually it goes down but it is just a bother.
Having said that, thankfully since they extracted some liquid from the node for biopsy she has says it kind of feels better. Is this pressure something to worry about?
Here is her medication for the starting 2 months
Rifater (5 tablets a day.. not sure about the mg)
Ethambutol (400mg X 2) - a day
After that she was put on
Rafinah 300 (2 a day)
Once she was put on the stepdown Rafinah her symptoms of generally feeling weakish, having slighter back pain (compared to before) and slightly feverish appeared. While she was on the stronger bit of the course she was fine.
I would also like to mention that once we went to the TB specialist and he stopped the Rafinah 300 and put her on corticosteroids (prednisolone, 30 mg a day), her symptoms of weakness almost stopped right the next day.
So I'm thinking either the corticosteroids worked really well.. or was her weakness and joint pain a side effect of Rafinah 300 and soon as she stopped taking it she kind of felt better?
We dont exactly know the cause for anemia, but she has apparantly had it from her childhood. She was put on iron tablets when she initially reported these weakness symptoms from Rafinah 300, but the did not cause any improvement as such (compared to the stopping of Rafinah or the start of corticosteroids)
Currently she has been brought down to 20mg of steroids but she still seems fine, but my concern is that is it the corticosteroids that could be masking her symptoms (and once they stop they might come back) or stopping the Rafinah dosage has helped her out?
You seem like a knowledgeable person in this field so I would be keen to hear your opinion on this.
Also, just to bring the previous question back to light, is the feeling of pressure in the chest anything to worry about or is it expected after TB medication?
I am also sorry to hear about your mother, but at the same time glad at the fact that she is okay now and hope she is coping well despite the lung removal. As long as she is alright now, all is good :)
Again, thank you so much for your support so far mkh9, you have been extremely helpful and kind.
Looking forward to your reply,
Roger.
Hi Roger,
glad her blood test was normal. I hope the biopsy will be normal too. It sounds by your description that she is actually doing fairly well. Keep monitoring her symptoms. Is the pressure in the chest in the area near the lymph node? I'm not sure what the radiating heat is but keep an eye on her fevers (that they don't come back) and how fatigued she is. What antibiotics was she on? I'm glad you have a TB specialist. Since you are going to follow up with him for the biopsy you probably will have to take her back later for another follow up. Definitely go in if the symptoms come back. By the way, my mother had TB also when she was in her 20's and had to go to the hospital for a year for treatment. They removed one lung. She did well considering she had one lung. The treatments were much more harsh back then as they really didn't know the right dosages and some people went deaf. She had ringing in her ears all her life. Now with all the resistance that emerges from these organisms and most other bacteria it is best to be very diligent in reporting any untoward or recurrent symptoms. Hopefully, she is on the mend though. As for the iron deficiency anemia do you know the cause? Also, is she on iron pills?
take care,
mkh9
Thanks again mkh9,
yeah there was a blood test done on her which showed things were normal, my mum is slightly aneamic but that problem has been running along for a very long time now and is nothing new, and that is all that reports showed - shortage of iron/haemoglobin
She only went through a procedure of bronchoscopy 3 days ago through which the doctor extracted some fluid from her lymph node. He did say that the swelling felt rubbery and that if it was soemthing like lymphoma 'it could slice like butter' when he tried put in the thin needle for the biopsy. However he still asked us to wait for the results to be sure so it still left a worry in out minds. We are waiting for biopsy results which the doctor will discuss with us on the 22nd of this month.
Hopefully this isnt as serious as lymphoma and the resistant TB (if that is what it is) can be dealt with swiftly :(
Mycobacterium Tuberculosis (MTB) is a nasty horrifying pathogenic bacterium that, unfortunately, comes in several flavors, at least one of which is extremely resistant to destruction by antibiotics. Contrary to popular belief the bacteria can settle anywhere in the body, from the toes to the fingers, and is not confined to the lungs. Millions of humans died from this disease until the 1940's when Rutgar's University developed the drug streptomycin as a treatment. We believed we had eliminated this disease from the planet, but non-complience with treatment protocols eventually caused the mutation and development of new varieties. There is no "cure" for MTB. Once you have an infection MTB will only go into remission and become encapsulated, to emerge once the immune system is compromised. There is no cure. During the 1920's virtually one hundred percent of health care personnel tested positive, because of patient exposure. One of the greatest developments was the discovery in 1904 that untraviolet light could kill MTB, for which a Nobel prize was awarded. The other two significant develelopments before the use of antibiotic was the use of linoleum, which for the first time permitted a hospital to sterilize the floors. The other was the introduction of "hospital whites" for nurses, which unfortunately has been discouraged recently. Only bleach will kill MTB and you cannot disinfect colored garments effectively. At Columbia University Medical School in New York are fifty feet of librarty shelving containing all the information on MTB from the 1850's until 1945. Probably the largest non-databased collection in the world. The organism has active and dormant phases, and when active is highly contagious. Coughing on a newspaper can cause the MTB bacterium to remain capable of causing disease for three or four months. I have the study (from 1923) on that. There are various treatment protocols, and I can provide no advice as to which one is most advantageous, however it is only recently that we have "rediscovered the wheel" and started to teach a new generation of physicians how to deal with MTB patients. I would suggest that you find a physician who specializes in MTB, and follow the treatment ptorocols religiously.
Hi Roger,
Lymph nodes can stay swollen for quite a while hard to define exactly when they will go down. Did they do a biopsy at some point, of the lymph node to check for TB? I assume they must have done a complete blood count too. Both of these would have ruled out lymphoma. The only question is whether the TB has become resistant to the antibiotics given. But if she is doing better as is sound like she is, then I would stay the course and try not to worry. If she gets worse and starts getting symptoms again then I would revisit the TB specialist. I hope this helps.
mkh9
Thank you so much for your promt reply,
Yes I did bump into that bit of information on wikipedia while looking around the subject, but I hope it is okay if I asked you a few q's based on the text for further clarification.
It says around 2-3 months after start of treatment the nodes tend to shrink again, however it has been six months after the start of her symptoms and the chest nodes are swollen.. is this normal?
She was also put on steroids as I said before but the thing is that after 2 weeks of 30mg/daily steroid dosage the chest node swelling did not come down. It neither increased nor decreased - stayed the same. Am I right in assuming if it was something like Hodgkins lymphoma, it would have manifested other symptoms by now apart from just the swelling of the chest lymph node? Or atleast the lymph nodes would have grown despite the steroids? (When her symptoms were at peak in january she was checked for swollen nodes and stuff around her body, but thankfully nothing was found)
Thanking you again,
Roger.
Hi Roger121,
This is from Wikipedia. I can't answer it any better. I hope this answers your questions. If not let me know and I'll try to answer any further questions, or concerns.
Tuberculosis not affecting the lungs is called extra-pulmonary tuberculosis. Disease of the central nervous system is specifically excluded from this classification.
Up to 25% of patients with TB of the lymph nodes (TB lymphadenitis) will get worse on treatment before they get better and this usually happens in the first few months of treatment. A few weeks after starting treatment, lymph nodes often start to enlarge, and previously solid lymph nodes may become fluctuant. This should not be interpreted as failure of therapy and is a common reason for patients (and their physicians) to panic unnecessarily. With patience, two to three months into treatment the lymph nodes start to shrink again and re-aspiration or re-biopsy of the lymph nodes is unnecessary: if repeat microbiological studies are ordered, they will show the continued presence of viable bacteria with the same sensitivity pattern, which further adds to the confusion: physicians inexperienced in the treatment of TB will then often add second-line drugs in the belief that the treatment is not working. In these situations, all that is required is re-assurance. Steroids may be useful in resolving the swelling, especially if it is painful, but they are unnecessary. Additional antibiotics are unnecessary and the treatment regimen does not need to be lengthened.
regards,
mkh9