How do you know if Isoniazid is affecting the nerves?

[rosegardens]

Hello Everyone,

Hope you are having a good day...

I started Isoniazid a few weeks ago, and just wondering if anyone has any knowledge or experienced some symptoms of nerve damage due to Isoniazid?

I seem to have a little bit of weakness in my hands.. I'm not sure if I should be concerned about this at this point or not? The thing is that because of having Sjogren's disease I had some pre-existing weakness and some small fiber neuropathy symptoms that tend to fluctuate..

thanks so much in advance,

Rosegardens

[HelenC Partner TB Alert]

Hi Rosegardens - Izoniazid is known to cause pins and needles. However, this is the sort of thing I would pick up the phone to my doctor about or at least speak to a pharmacist. Please let me know how you get on.

[rosegardens in reply to HelenC]

Hello Helen,

Many thanks again for your reply. I agree, I should talk to my ID Dr. He is away at the moment.

I would like to ask you something Helen, just wondering if people can have silent active TB that they are not aware of because symptoms are mild and are attributed to other medical issues... For instance, my bones at many points painful when I press on them. I always attributed this to Sjogren's Disease. If there is some sort of silent active TB, having Isoniazid treatment for Latent TB may have negative effects.. i.e. when finished 6 months of treatment, this active TB is likely to be still there and possibly the bacteria may gain resistance to medication (because I did not have full TB treatment for active TB). Hope it makes sense ...

Have heard of people having silent active TB ? Just wanted to know if you have any information based on other TB patients' experiences like in real life situations ..

Many thanks again.

Rosegardens 🙂

[HelenC Partner TB Alert in reply to rosegardens]

Hi Rosegardens,

It is increasingly thought that latent TB can become active and lapse into latency again - as the immune system battles with the bacteria. Active TB can also be masked by other symptoms, as you describe. However, your doctors would be very alert to any signs of active TB in you, particularly in light of your other health conditions that would make it more likely for latent TB to become active. I don't have the medical expertise to comment on whether mistakenly treating active TB with a latent TB regime could be harmful - I'm afraid this is something to discuss once your doctor returns. However, I would urge you to continue with the medication in the meantime as this would be the best course of action in any case.

Best wishes,

Helen

[rosegardens in reply to HelenC]

Hello Helen,

Thanks so much for your reply.

I see.. I guess, in that case, it is good to review all possibilities with my ID specialist on his return, thanks so very much for your time and dedication to people like us !!

Warm Regards,

Rosegardens

[rosegardens in reply to HelenC]

Hello Helen,

My ID specialist recommended 6 months of Isoniazid treatment for me for Latent TB. When I asked he said this would provide 80% effectiveness. Because of my autoimmune disease, I may need to be on Biological medication in the future -you never know how the disease will progress. He said if I take 9 months this would provide 90 % effectiveness in terms of killing TB.

You hear a lot of patient stories, what I was wondering was, have you come across patients' experiences where they had 6-month treatment with Isoniazid with 80% effectiveness and went on biologicals and they were fine, meaning TB did not get activated?!

I'm sorry weird question, just wanted to check to see if you have any information to pass on..

I'm really trying to suss out if 80 % coverage is good enough for biological ?!

Thank you so very much in advance..

RG

[HelenC Partner TB Alert in reply to rosegardens]

Hi Rosegardens - I'm afraid I can't answer this as it goes beyond my knowledge and also remit, as I am not a doctor. If unsure, you are always able to get a second opinion from another specialist.

Best wishes,

Helen

[rosegardens in reply to HelenC]

Hi Helen,

My apologies, you are right actually I should seek professional advice, perhaps look into the literature.

Many thanks,

RG