I have MDR-TB and I need guidance.

[SolitaireP]

Hi… Im diagnosed with MDR-TB. It’s been 6 months since I’m getting treatment. I’m facing issues like lower leg weekness, I’m not able to sit on floor or use Indian style restroom. Even my arms pain when I try to lift my hands. I’m very scared that this condition of mine will not go. Please guide me. I want to know whether I’ll be able go back to my normal life after this treatment ends or I’ll be suffering with this pain and weekness for life long. Please someone help me.

[Scribblers]

What medication are you on? Do you have tingling or nerve pain in feet or hands?

[SolitaireP in reply to Scribblers]

No tingling but I have pain in my arms like when lift my hands my arms pain. No pain in feet

[SolitaireP in reply to Scribblers]

N I was on bedaquiline, high dose of isoniazid, ethionamide, pyrazinamide, ethambutol, pyridoxine n levofloxacin for 6 months now 5 months are left and the tablets have reduced bedaquiline isoniazide n ethionamide I’m asked not take.

[Jack70]

Did you take any Fluroquinolone medication eg, levofloxacin, Ciprofloxacin.

[SolitaireP in reply to Jack70]

Yes I’m taking levofloxacin. Will it affect me permanently?

[Jack70 in reply to SolitaireP]

I can’t tell that. But what I can tell you is that in my case and many thousands worldwide is that Fluroquinolone antibiotic have resulted in serious long term damage that has ruined lives, although not everyone does it’s a huge gamble if you ask me, I certainly regret it. Ask if there’s a safer alternative and join the facebook group .

surviving antibiotic adverse reactions Avleo, Cipro, Levaquin, Floxin. Or google Fluroquinolone toxicity. There’s loads of info. Hope this helps.

[SolitaireP in reply to Jack70]

Can I please know how you are now, what was your experience, and how you are feeling now?

[Jack70 in reply to SolitaireP]

It’s 12 months since I threw that Ciprofloxacin in the bin. As of today I have upper back pain that travels down my arms and into the chest( very painful). Burning pain in my buttocks either side of my tailbone. Knee pain , ankle pain and Achilles pain in my right leg, also rib inflammation.My digestive system is still damaged, but just as bad my central nervous system is damaged for instance muscle twitching, face pain, headaches, tinnitus, blurred vision and insomnia.

In my opinion these drugs should be banned, but please watch the videos on YouTube they explain things better than me and join the Facebook groups to here from others.

Arm yourself with the evidence and see your doctor if you are getting these side affects.

Good luck Solitaire, let us know how you get on.

[SolitaireP in reply to Jack70]

God that’s so painful bro. Please take care and I’ll be in touch with you please keep saying your improvement n I’ll be saying mine

[HelenC Partner TB Alert]

Hi SolitaireP,

I am sorry that you are experiencing ongoing side effects from your MDR-TB treatment. The treatment is absolutely your best chance to be cured of TB and to go on to live the rest of your life, however there is no doubt that the treatment can be extremely difficult.

It is really important that you let your TB doctor know the side effects you are experiencing, so they can offer other medications or a change in your treatment that may help. Reaching out for support is also a crucial step to get through this - so I am glad that you have reached out to us. Have you got family or friends that can help you with your practical and emotional needs during this time? If you can take a break from cooking, housework and other tasks and concentrate your energy on getting better that will help. Rest and good food will help you tolerate the medication and rebuild your health.

Try to remember that each day you take your medication you are another day closer to finishing - it may seem like a long time but the rest of your life awaits you.

best wishes,

Helen

[SolitaireP in reply to HelenC]

Thank you Helen, I spoke with my doctors they are saying it’s tablets side effect and it’ll go once the tablets stop. But I’m reading many articles about tb and came across side effects like neuropathy which scares me. If it’s just muscle pain and goes away once the medication is stopped I’ll be in peace.

[Vijjit]

Don't worry. You will be feeling normal after you are off medication. Please have good balanced diet. Have protein rich food. If required consult a nutritionist. Eating a healthy diet is a must. Treatment causes different kinds of side effects. You might be having muscle and bone loss. So eat well and rest well . Build up the lost muscles and bones.