i have several numbness and pain in boeth feet, and hands
What can help with severe peripheral nuropathy after taking macrobid?
Question posted by chaplpat on 15 July 2013
Last updated on 1 December 2018
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4 Answers
swim2lakes
23 April 2015
OMG. FIRST, Chaplpat: PLEASE tell us that this has resolved?
I have taken Macrobid for years for chronic UTI's, both prophalactically post coital and many full courses for UTI's. Because I have severe nerve damage from other causes ( traumatic nerve root injury), when this SFN started last fall, I thought it was a complication of other issues. I have had FOUR 10-day courses of this drug, since October, all the while getting sicker, and in "suicidal pain". I even went to the ER in Feb., saying I thought I might be "demylinating". I was really terrified. They did not figure it out. I just this week put it together, after 2 more full courses of this drug in March. The constant electricity in my feet, calfs, hands and forearms, worse at night is exhausting and I do not think I can live with this. I have used a wheelchair for 30 years, have had multiple and mutilative surgeries, but this takes the cake.
Neurontin is not touching it, and I could not tolerate the tricyclics. I am very, very desperate, and VERY pissed off.
I hope you are well, and have recovered. Please tell me you have.
dansuefam
10 Jan 2017
@swim2lakes swim2lakes and chaplpat how are you guys feeling now?
CatheO
1 Dec 2018
I’m wondering how long my toe and sole swelling will last. It’s gone down on the tops of my feet. Numbness and prickly sensation in both feet after taking 5 out of 28 Macrobid pills. This was on November 3rd 2018 that I stopped after the 5th pill. My doctors are scratching their heads and so far no help.
My fingers were slightly swollen and tingly for one day. Feels as if I’m walking on puffs of water bubbles or air bubbles.
Potassium levels are fine.
This all started with an E. Coli resistant UTI in August 2018 and several different antibiotics were tried and failed. August 17 2018 Cefdinir Then August 21-25 2018 Five days of Rocephin injections into my thigh muscles. Then a one dose of Fosfomycin on September 8 2018. Followed by IV September 28-October 3 2018 Mirapin in hospital and the home care IV for another two weeks. Next was Macrobid on October 31st -November 2nd ( 5 pills out of 28) when neuropathy started. Then three doses of fosfomycin in mid November.
I just want my feet back to normal. Has anyone else come back from this?
sara12345
16 July 2013
Did you say that Macrobid caused your peripheral neuropathy? I did see that as a side effect. How long have you had the pain from this med? Does the doctor think that it will go away in time? I was on that same med for more than a couple years and was finally diagnosed with pneumonitis--a severe lung disease which I couldn't walk across the room without getting out of breath. I saw that a lot of people with that disease caused by the Macrobid never recovered even with steroid therapy. I took steroids for over 6 months and got away with scarring on my lungs. That the doctor never checked me for it was unconscionable. I should have sued her. There are all kinds of precautions in the PDR, but this illness was in big bold print in the PDR, saying that patients should be monitored for the illness. That was before I knew to check on meds before taking them. I hope that your illness will go away in time. Sara
chaplpat
17 July 2013
I started on Macarabid on June 30 for 7 days. This was for a UTI. by day 8 I was having numbness and gingling in feet and hands. I thought it was low B12 so I asked the doc to order blood test. By day 14 it was worse and very painful. I went to the ER following my primary's suggestion. She thought it might be a stroke. My B12 level was drastically low as well as my potasium level. I received 2 bags of potsium via IV and two pills orally. I also got an injection of B12. I am now on B12 injection daily, 2 Potasium tablets, as well as the other medications. I have no releif yet.I have severe pain, burning, numbness and tingling. in my feet and up my legs. My hands have numbness and tingling. I see a neurologist tomorrow. My doctor and I feel strongly this is a result of the Macrbid. i called the FDA, they did say it has been reported and is a side effect. I asked if I should send a written report. they sid No it has already been reported. I do plan on send a letter and stonly urging this medication be taken off the market. It can be dangerous.
chaplpat
30 July 2013
Did you report this to the FDA? I called them. They said my neuropathy is a side effect of macrobid. I am filling out a report to send to the FDA. Perhaps if enough people who have side effects file a report with the FDA, they might do something about this medication.
sara12345
1 Aug 2013
There was no need for me to report it to the FDA because it was a well known side effect which my doctors were too ignorant to pay any attention to it. There are many terrible side effects from some medications including fatalities. It's a cost benefit analysis as far as whether to take the medication and being more attentive to the early stages of it to avoid the severity of the problem. In your case, instead of your doctor just ordering a blood test, they could have looked up the side effects and immediately had you stop the medication. But if the side effects have not been listed as being permanent and your side effects keep on, then I would report it to the FDA.
After finding out that bone building medications all have the possibility of causing muscle and bone pain which MAY go away after stopping the medication, I told my doctor that I would rather deal with my osteoporosis than risk it. This is after having a single injection a year ago of a bone building medication called Prolia which had nothing to say about any skin pain, and nothing about permanent bone pain and skin pain, but that's what I seem to have. That's what I DID report to the FDA who wrote back that they will pay more attention if they get more reports like mine. I sincerely hope that your pain goes away.
Militarybratt1968
14 Aug 2013
I started taking this a couple of days ago,for a UTI and kidney infection and within 12 hours of taking this I started getting the painful numbness and tingling.. I have also noticed that all my joints hurt, and my hands are puffy.. I am allergic to nearly all the common antibiotics they can prescribe. ie: sulfa, penicillin, the z-pack (Azithromycin) mycin family,and cipro. So I am very limited to what can be prescribed and now I'm scared from reading some of the posts and the side effects.
sara12345
15 Aug 2013
If you stopped the medication right away, you have a much better chance of the effects not lasting. I hope that with the severity of your symptoms that you have stopped the medication and reported it to your doctor. There must be something else that you can take. So very sorry. I'm also allergic to many medications.
kathyhanson
15 July 2013
chaplpat,
I feel your pain, darlin! It seems that treatment for PN is very specific for each individual. The pain is 24/7 misery. Talk to your doctor about finding the right med for you to ease your discomfort (mildly speaking). For many with PN, gabapentin (Neurontin), Cymbalta, and Lyrica seem to help more than other meds. Until you can talk to your doctor about meds, for me, soaking in a hot bath helps tremendously with the pain. For others, cold water helps. You have to find out which works for you. OTC pain relievers don't help.
Hang in there! I hope you will join us here on DC as a regular. Our members are very knowledgeable, caring and supportive. In the PN support group, we all live with the same pain and completely understand each other. You would be a great addition to our community.
Kathy
chaplpat
16 July 2013
I am currently on Gabapentin (2 weeks) with an increase every couple of days.
I am up to 900 gms. I was also put amitriptyline yesterday. My primary care doctor thought this might help. I am not depressed, but willing to try anything.
I could not get an apt with a neurologist till 3 weeks from now. My primary doc called and got me an apt. for Thursday this week with an nuerologist. I am hoping he will find a cure .
I get B12 shots everyday and on 2 potasium pills daily.
How long does this last with others. Is it a lifetime thing or temparary..
Did others get this from the antibiotic? If so why do they keep in on the market.
I relly need to know if this is lifetime???
kathyhanson
16 July 2013
chaplpat,
Usually neuropathy is permanent, but for a lucky few, it goes away in time. I hope you are one of the lucky few, but since you are taking gabs and amitryptiline, I suspect your neuropathy is permanent. How long ago did this start? I've never heard of neuropathy caused by Macrobid, but our bodies react to meds uniquely for each person. Mine was caused by chemo. Just stick with us, your fellow PN sufferers, and we'll all get through it day by day!
Kathy
sara12345
16 July 2013
I looked up the side effects of Macrobid and yes it can cause neuropathy. Perhaps since your neuropathy was caused by the medication, it might be reversed by stopping the medication in time. But the neurologist will have an opinion on that. Really hope that it is not permanent. I've had bad pain from my Prolia injection, which the endocrinologist thought might go away in time. It's now 9 months later however. Hope it gets better for you.
kaismama
15 July 2013
Drugs like lyrica or gabapentin can help. Some say cymbalta helps too. Both of the drugs together are usually prescribed.
Related topics
Further information
- Macrobid uses and safety info
- Macrobid prescribing info & package insert (for Health Professionals)
- Side effects of Macrobid (detailed)
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