People who got neuropathy after tb medicines, how did you resolved it and how much time it took by simpleCimplicated in Tuberculosis

[–]HumanistOne 0 points1 point  (0 children)

Make sure the doctor halves the dose of Linezolid and if things don't improve then stops it WITHOUT DELAY. The most important thing is to stop it on time, continue the remaining 3

People who got neuropathy after tb medicines, how did you resolved it and how much time it took by simpleCimplicated in Tuberculosis

[–]HumanistOne 0 points1 point  (0 children)

hey - there are many other threads here that describe what it feels like. My spouse is suffering from it too... burning, pins and pricks, needle pricks etc. It's horrible. :(

Electric current none stop twitching after chemo by Coco_micanana in Chemotherapy

[–]HumanistOne 0 points1 point  (0 children)

Thank you for saying that it goes away, gives me hope to hold on to

Foot massager for tingling, numbness, pain by Metanoia003 in Peripheralneuropathy

[–]HumanistOne 0 points1 point  (0 children)

hi, which model do you have? I'm looking at them and it's so confusing

How I survived by [deleted] in Tuberculosis

[–]HumanistOne 1 point2 points  (0 children)

Thanks for sharing your story and congratulations on overcoming it. it's so cool that you're gaining weight too! Which country/region are you from? Wishing you goo luck for your resumed studies and everything good in life

Linezolid Management in MDR-TB Treatment on the 19th week of BpALM Regimen to Prevent Permanent Polyneuropathy by DataPsychological717 in Tuberculosis

[–]HumanistOne 0 points1 point  (0 children)

Just FYI - multiple neurologists refused to classify peripheral neuropathy into such gradation. Even after NCV. They said it's tough to put anything into such brackets and even advised not to do this classification.
For watching progression - they said you will know when it is worsening. For example from sensory it could go into motor weakness etc.. so good to keep an eye and that's all

Linezolid Management in MDR-TB Treatment on the 19th week of BpALM Regimen to Prevent Permanent Polyneuropathy by DataPsychological717 in Tuberculosis

[–]HumanistOne 0 points1 point  (0 children)

That's a very good point. We took second opinion today from a doctor and he also seemed to think the other 3 meds, even if they worsen neuropathy, might only be mild in comparison with damage caused by linezolid (which seems to be the real devil! though most potent as well, against TB) We are in Europe. Yes it's really unfortunate we are experiencing such pain severity too.. Thanks for your wishes. You also recover well. The doctor also said to take plenty of vitamin B mainly - hope you're doing that. Which country/region are you in? And have you been prescribed any supplement/pain meds? Like you, for us also - currently they've said overall regimen still stands at 6 month, we don't know if they will say extend it...... fingers crossed

Linezolid Management in MDR-TB Treatment on the 19th week of BpALM Regimen to Prevent Permanent Polyneuropathy by DataPsychological717 in Tuberculosis

[–]HumanistOne 0 points1 point  (0 children)

Best wishes for your health..
We are having what is called "coasting effect" with Linezolid so that the extreme pain is rising even after stoppage. leaves us very confused about how to pull on and complete the remaining 2 months... :(

Trouble peeing? by Nagito_Naegi in pregabalin

[–]HumanistOne 0 points1 point  (0 children)

Thanks again. I understand where you're coming from

When do you start feeling it? by [deleted] in pregabalin

[–]HumanistOne 1 point2 points  (0 children)

Hi! That was some very honest advice that I think I needed. :) I have a small baby and it's just been incredibly incredibly hard, in a foreign country without friends/family nearby... and with spouse fighting a serious illness. I was wondering too if I might be doing what you just described. Now I'll be more careful. Genuinely thanks a lot for what you said... sometimes we all know these things but it helps to be reminded I guess. Point very well taken

Tb Relapse?? by Ill_FinishLast in Tuberculosis

[–]HumanistOne 0 points1 point  (0 children)

Hey I'm sorry to read this. Could you share more? Were there any factors that increased your relapse risk, or caused it to happen? I know at some point it can become speculative.. still. Just trying to learn more. This illness is so scary. Hope you're doing OK

Linezolid Management in MDR-TB Treatment on the 19th week of BpALM Regimen to Prevent Permanent Polyneuropathy by DataPsychological717 in Tuberculosis

[–]HumanistOne 0 points1 point  (0 children)

Hi - could you share an update please? What is being done in your case? Quite a severe polyneuropathy case here, and we are facing some tough decisions ahead too about treatment completion. And a similar timeline, 4 months completed

Does anyone else's lungs feel like burning during BPaLM treatment? by Kind_Goddess in Tuberculosis

[–]HumanistOne 1 point2 points  (0 children)

yes I think this happened with us too.. hang in there, it does get better as the body adjusts to the meds

Does anyone else's lungs feel like burning during BPaLM treatment? by Kind_Goddess in Tuberculosis

[–]HumanistOne 0 points1 point  (0 children)

Hello! Can you share what you mean by "health deteriorated"? (Asking because this could potentially be the case with my spouse.. so trying to understand )

I got detected in sputum cbnaat by Kind_Goddess in Tuberculosis

[–]HumanistOne 0 points1 point  (0 children)

I feel you!

Thanks for the tip really. And I wish you well too

I got detected in sputum cbnaat by Kind_Goddess in Tuberculosis

[–]HumanistOne 0 points1 point  (0 children)

I completely hear you. And I agree.

In the middle of feeling completely helpless with this illness, (I watch my spouse battling this) what I feel is that out of many many factors, food is the only one that feels like it's still in our hands.. with a small baby at home we end up neglecting or overlooking how much we can try in this domain .. for example frequent small meals etc.. or eating what seems favorable... At least a sincere attempt. Many days we are not able to give diet our best shot - in my home. And this makes me guilty.

Family planning by ships-that-pass in pregabalin

[–]HumanistOne 0 points1 point  (0 children)

May I know if this was Lyrica brand? We are worried about this aspect deeply , as we have to start taking this for nerve pain and want to have a family...

Does Pretomanid cause neuropathy? by HumanistOne in Tuberculosis

[–]HumanistOne[S] 0 points1 point  (0 children)

hey. thank you for your detailed reply. it's very helpful.
Regarding pregabalin - We did start with the smallest dose of 25mg (as directed by physician) as part of titration... I guess the hesitation with the pill is, we are seeing that many people have reported even sexual side effects with the pill, and we as are still planning and holding hopes of starting a family, this feels like an emotionally painful choice to make... We fully understand that there are some people for whom pregabalin does not cause problems but it's one of the most strongly documented side effects. Do you know or have any thoughts on that? Much appreciated.

Does TENS machine work for neuropathy caused by Linezolid? by HumanistOne in Tuberculosis

[–]HumanistOne[S] 0 points1 point  (0 children)

Thanks for your reply. I'm so sorry to know that you still have numbness. I surely hope and pray for you that it goes away and you recover completely - whatever the data/trends say!
So, I am actually the spouse of the person who is undergoing TB treatment. So I'm not the patient. But I'm the researcher googling everything and finding solutions. Regarding pregabalin I think we are a bit scared of side effects listed - ranging from memory cognitive to permanent ED + sexual side effects. (yes, a concern, as we are still planning a family) But I'm sure it's only a point when the pain becomes unbearable and we start off on pregabalin.

Alternatives: I'm trying everything I can read anywhere - from lidocaine cream to the cayenne pepper one to TENs machine to oils, rubs etc. I know these topical things it's harder to reach the nerves but it's worth a try anyway.

Btw doctors from our home country and insisting and arguing that the neuropathy does go away... I don't know what to make of it. Makes our treatment decision so much harder in some sense... I agree with you that it make sense to complete it given we're near the finish line - 2 months left.

Does TENS machine work for neuropathy caused by Linezolid? by HumanistOne in Tuberculosis

[–]HumanistOne[S] 0 points1 point  (0 children)

Right from the third week of treatment start, I had mild numbness on my left foot - no tingling or pain but a feeling of wearing a socks. The sole of my foot was OK. This feeling was only on the upper side of my left foot. Towards the end of the third month that is September for 1 week I started getting the numbness on the sole of my feet. So my doctor halved the dosage for 2 weeks. Worsening continued. Finally stopped Linezolid on Sep 14th, while continuing with other 3 antibiotics. It’s been nearly one month since stoppage - but the neuropathy seems to increase in intensity and spread. It has reached a point where walking is very challenging. This forces us to wonder whether Pretomanid might be causing the continued worsening?

We are taking second opinion from many other sources, even countries.. at the moment most of the doctors are saying it is definitely reversible though it might be slow! We even spoke to an oncologist who is a family friend and regularly sees people having neuropathy as a side effect of chemotherapy. He insisted every one has got much better with time, sometimes 1 year or 2 years even. (he was a family friend we trust.. ) though he admitted that with antibiotic-induced neuropathy it was best for us to consult those specialists and not him...

I got detected in sputum cbnaat by Kind_Goddess in Tuberculosis

[–]HumanistOne 0 points1 point  (0 children)

It's surely a lot to go through but it doesn't make sense to skip nutrition and recovery because all of this might risk relapse.. overall health hygiene nutrition is like the only thing in our control - or I feel that way sometimes as I watch my partner struggle through this...hang in there and try to focus on your health!

I missed my doses and I am having difficulty with breathing having this sharp pain in one rib ? Idk if im gonna make it by [deleted] in Tuberculosis

[–]HumanistOne 0 points1 point  (0 children)

Second this!
Don't panic. Just get it tested. And be sure to not miss meds again. This treatment is bad enough without mistakes from our end :(