Anyone with HIV+ and Tuberculous lymphadenitis?

[SanjeevKashyap]

Dear All,
I was diagnosed with HIV in March 2020. Before that i had a swollen lymph node the size of pea, which when increased a bit in size worried me and so I approached the doc in January 2020. An FNAC was carried out and test results showed  everything to be normal. Then in March 2020 i was diagnosed with HIV and immediately started ART. Then in May 2020 i observed the size of the lymph node growing in size. An FNAC revealed i have TB. The report says Tubercular Abscess. My doctor said it is localised TB and immediately started my medication (combo of rifampicin, isoniazid, pyrazinamide, ethambutol for a 6 months course). Now after 1 month of medication there is another lymph node appearing on the right side of the neck. The previous one was on my left side above the collar bone and is still there. This new one is on the right side below the jaw and the ear. Is this normal? I have read on the internet that during medication multiple lymph nodes might appear or the existing might worsen.
Is there anyone here who had taken medication for TB of lymph node? I want to know what to expect during my course of medication. What are the different stages as my medication progresses? I want to know from someone who has experienced treatment of TB of lymph node.

[Expat1]

No personal experience.

But your doctor probably has lots of experience, so I would advise you to ask them.  If you just started your ART meds, it could be the IRIS thing, where your body now getting your immune system  back on track, now is fighting the virus.  Your doctor is the best place to have that discussion.

[zach]

Sanjeev, I went through RIPE therapy nearly 10 years ago

It was difficult, physically and mentally those meds wore me down

The force of will it took was... maddening. It was a dark time.

After, my nodes never quite returned to normal. A little too swollen, a little too hard, occasionally a twinge of pain when I stretch my neck. I dont use deodorant on my arm pits any longer. Reminders of the ordeal I guess.

But I made it through, and haven't really been affected in the years since.

I'm sure you know, but it bears saying for anyone reading

Dont touch your lymph nodes. As tempting as it is to probe around, to monitor swelling, my experience was touching always made things worse.

I don't have sage advice, just moral support. What you're going through right now sucks. Each day, a new fresh hell. I became convinced that it was either a test, or punishment. Karma come to collect it's due.

This isn't advice, I'm not convinced it's the right way to cope. But it's what I did and continue to do.

I don't think about it. Any of it. Things happen to my body I don't understand, I report them to my medical team, I do what they tell me. I don't research anymore. It only caused anxiety and worry.

[SanjeevKashyap]

No personal experience.

But your doctor probably has lots of experience, so I would advise you to ask them.  If you just started your ART meds, it could be the IRIS thing, where your body now getting your immune system  back on track, now is fighting the virus.  Your doctor is the best place to have that discussion.

Hi Expat1,
Thanks for your reply. Well i dont know much about the IRIS thing. I will try to google it. I will talk to my doctor. But actually my HIV doctor said i have nothing to worry when i first told him about the increase in size of lymph node. He said before starting my ART medication they have tested me for any other disease and said i dont have any. But still worried i went to another doctor who did an FNAC test of the lymph. When the teat results said it is tubercular abscess i immediately sent it to my HIV doctor. It was then he started my TB medication. So this is the prime reason why I now believe in having a second opinion. Have i listened to my HIV doctor and sat doing nothing I would have never found out about my TB. It was when i consulted another doctor and did the test i found i have TB.

[SanjeevKashyap]

Sanjeev, I went through RIPE therapy nearly 10 years ago

It was difficult, physically and mentally those meds wore me down

The force of will it took was... maddening. It was a dark time

Hi Zach,
Yes you are right. The medicines are really strong. Within a week of taking them i lost my appetite and lost weight. It was terrible. I became so weak. Its going to be a month now and thankfully my appetite is back now and also I feel I am getting my strength back.
My nodes are not painful. I just feel them when i turn my head around since they are on my neck. So it is normal to get multiple nodes during medication? I thought because of medication the one node that i have will shrink and finally disappear but instead i have second one  . So as of now i have two nodes.

[zach]

I'm really not qualified to say what is normal. My experience with hiv, everything about it... is that people have a wide range of individual responses.

Here's what I know. Objectively and empirically. RIPE therapy is effective. Take the course of meds.

IRIS is immune reconstitution inflammatory syndrome. Your immune system has been compromised, and stopped fighting. It went to sleep. HIV had it's way on your system for however long, and you didnt fight whatever opportunistic infections that visited you.

Now, you're on HIV meds, your immune system is getting strong, it's reconstituted. It woke up, looked around at the havoc in your body, and its inflamed and fighting back. There is a drug fueled battle going on in you right now. With at least two battle lines. HIV and TB. Shitty combination

Chak de phatte, nap de killi... keep fighting.

[SanjeevKashyap]

Hi Zach,

Thanks for the breifing. I just want get back to one pill regime. And don't want any other coinfection. Fingers crossed.

[Expat1]

I now believe in having a second opinion. Have i listened to my HIV doctor and sat doing nothing I would have never found out about my TB. It was when i consulted another doctor and did the test i found i have TB.

The doctors and medical staff try hard but sometimes make mistakes.
40 years ago I was prescribed Septra DS an antibiotic and the doc scribbled.   The pharmacist read it as Serapes  [spelling?]  A DRUG FOR HYPERTENSION.  This was preinternet.  After 2 weeks, the infection had not gone away, I took the med bottle back to the doctor, he looked at the label shocked, did not say anything and wrote another prescription.

I went to the library and looked up both drugs and realized 1)the pharmacists mistake and 2)the doctor didn't tell me about the mix up.

After that I have always asked the pharmacist for the patient paper for every medicine I take and I read it.

Just this week I has some shoulder pain and I told the orthopedist that I take ARVs, they are listed on my chart.  He prescribed a med that would counteract my HIV meds. 

I caught the mistake at the pharmacy, said I cannot take.  Then I had to explain the contraindication to the pharmacist who called the doctor to explain it to him.

So be informed.  Ask questions.

[SanjeevKashyap]

Hi Expat1,

Thanks for sharing your experience. I will ask.

Regards. Wish you the best.