POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: Bunny on January 03, 2012, 07:22:58 am
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After my cold sores setting down I am suffered once again with Peripheral neuropathy. My doctor prescription one pill per day for 30 days.
one capsule contains ( benfotiamine - 100mg, methylcobalamin-1000mcg, pyidoxine hydrochloride - 3mg, alpha lipoic acid (ALA) U.S.P-200 mg, Inositol U.S.P-100mg,Folic Acid-1.5mg)
I am taking this pill once a day since four days, still i have pains (mild) in my legs.
Is pheripheral Neuropathy take to me Paralasys?
Friends suggest what to do?
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Hi Bunny,
What is the name of the new med you're taking? I've googled the ingredients and it looks like it's just a supplement - and to be honest, I can't see how taking it for 30 days will make much difference to your PN.
Unfortunately, one of your hiv meds - stavudine - is notorious for causing PN. That's why it's rarely used today.
Also unfortunately, the only way to stop the PN progressing is to stop taking the stavudine and start taking another med in its place. Otherwise, all you can do is try to ease the pain with other meds or supplements.
I urge you to discuss changing the stavudine for something else with your doctor. I realise you're in India, but there ARE other meds available in India. You need to have a serious discussion with your doctor about this. You should not have to be subjected to this toxic drug in this day and age, even in India.
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Thanks Ann
The drug link is here
http://www.meyer.co.in/products/diabetone-pn.html
Please let me clear one doubt
Is pheripheral Neuropathy takes to me Paralasys?
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No Bunny, PN will not lead you to be paralysed. It causes pain, but not paralysis.
Please talk to your doctor about getting off the stavudine! You may have to be forceful with him. You should not have to put up with taking a med that causes PN when there are so many other alternatives - even in India.
Have you ever heard of the Indian company called Cipla? They manufacture many hiv meds as generics. They definitely make a generic version of Combivir, which is lamivudine plus zidovudine. While zidovudine (AZT) isn't an ideal drug either, it is much better than stavudine.
The name "Diabetone" sounds like it's a treatment for PN caused by diabetes which is a bit different to PN caused by meds. I very much doubt that it will work on PN caused by medicines like stavudine. Stavudine is damaging the nerves in your extremities.
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Bunny, there is also the option of taking a lower dose of stavudine. From the stavudine page (http://www.aidsmeds.com/archive/Zerit_1588.shtml) in the Treatments section (http://www.aidsmeds.com/list.shtml) of this website...
One Zerit capsule must be taken twice a day. The standard dose approved by the U.S. Food and Drug Administration is one 40 mg capsule twice a day. However, the dose can be adjusted according to body weight. If you weigh 132 pounds or more, the approved dose is 40mg twice-daily; if you weigh less than 132 pounds, the correct dose is 30mg twice a day.
In fact, the World Health Organization (WHO) recommends one 30 mg capsule twice daily for all HIV-positive people using Zerit or its generic equivalent, regardless of body weight, to reduce the risk or severity of stavudine side effects. Studies also suggest that for HIV-positive adults who have kidney problems or are experiencing peripheral neuropathy as a result of Zerit, the dose can be dropped to 15 or 20mg twice a day.
And something else from the stavudine page (http://www.aidsmeds.com/archive/Zerit_1588.shtml)...
Because of its potential side effects, Zerit is no longer a recommended NRTI for HIV-positive adults beginning anti-HIV drug therapy for the first time, according to treatment guidelines issued by the United States Department of Health and Human Services. Tenofovir and emtricitabine, used together as Truvada or as a part of Atripla (efavirenz, tenofovir and emtricitabine), is listed as the "preferred" dual-NRTI option.
You may want to point this out to your doctor. Is your doctor experienced in the treatment of hiv positive patients? If he's not, you might want to think about finding a more experienced doctor.
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hi bunny,
Sorry you are having these issues. i've been dealing with this for the past couple months. Those medications you listed above are Vitamin B supplements. I've been taking them along with the ALA and also Acetyl L Carnitine and they seem to be helping a slight bit. I'm taking the B12 injection since the pill form of B12 doesn't get absorbed very well.
I was on Atripla and my doctor just switched me off of that to see if a new medication will make a difference. The med you are on is more 'offending' than what i was taking, but 5 to 10 percent of folks taking the Atripla have my symptoms, so i'm crossing my fingers that my new regimine will help.
take care.
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HI Bunny
Unfortunately d4T (stavudine) is still a first line treatment in India. The recommended dose is 30mg twice a day for all patients.
AZT (zidovudine) is also a first line treatment in India, so at least ask your doc about taking this instead. It has less side effects that d4T. If you are already having neuropathy from d4T continuing to take it is likely to damage your foot nerves permanently.
Tenofovir is available on a named patient basis in India, so with a bit of shoving and pushing and waiting maybe you can even get on this drug, which is much, much kinder all round.
Good luck
- matt
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Thanks a very much to all,
@Ann
My weight is 39 Kgs (86 pounds). I am taking stavudine 30mg in my combo daily two times (along with Lamivudine, Nevirapine). CIPLA is very costly, I am using Indian Generic company called EMCURE.
Link: http://www.emcureaidsinfo.com/
@ mikeyb39
I do taken five Alderin(B complex) Injections every alternative day when I get this PN first time.
@ Ann, Newt
I got my doctor's appointment on Thursday 05-Jan-2012. I will update both of you, what he say.
Unfortunately I have this combo drug for next 15 days.
Once Again Thank for all. I feel very lucky having this helpful friends through this forum
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Friends...See my doctor suggessions
Changing Drugs:-
I am not taking any HIV drugs since two days.
After discussion with my doctor yesterday, he decided to put off Stavudine
and added Ziduvodine instead of stavudine, he placed a order for the same medicine.I will get this medicines latest by today evening
I will continue the same medicines since this evening
Lazid-N
Link:http://www.emcureaidsinfo.com/lazid_n.asp
Pheripheral Neuropathy:
I still have sharp pains in my both legs and Numbness in my hands.
These pains disturbing my day to day activities. I am not attending my job since three days.
My doctor added one more drug for PN
Rejusite (methylecobalamine-1500mcg,pregabalin-75mg) daily one
He suggested to take it with Diabetone-PN
Diabetone-PN
Link:http://www.meyer.co.in/products/diabetone-pn.html
Rejusite
Link:http://www.mims.com/India/drug/info/REJUSITE/REJUSITE%20tab
Now I am worrying with Ziduvodine side effects
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Friends Help Needed...
I started AZT based theraphy since 06th Jan evening ( 3 doses taken ). But I have still pains in my both legs. I have also sensing pain in my fingers ( both hands ).
Please suggest what can I do?
Is my nervous system still damaging? Is PN is progressing?
Can I stop my HIV medications?
Whom can I consult? I don't disclose my HIV status to anyone except my doctors?
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Bunny, unfortunately the PN isn't going to stop that quickly. Changing your meds will stop the progression, but it will take time for the nerves to heal. You may not ever be entirely free of the PN.
Please don't stop your meds because of this. PN will not kill you, but untreated hiv will.
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Hi Bunny,
I can sympathize with you, My doctor advised me that it may take several weeks, months after stopping an 'offending' medication to see any change. I switched my meds a few days ago, but haven't seen much of a difference yet. Its very annoying especially since doctors seem to be only guessing at the prognosis. I've been going back and forth to my HIV doctor and the Neurologist. My Neurologist thinks its something to do with my lower spine, so i have a follow-up with him in couple weeks i''m sure that will result in another test or two MRI, CT scan. i have had degenerative discs in the past, but really don't have any pain in my back at this time. My numbness seems to be in the feet and also the groin area and upper legs and left arm, so thats why he isn't sure that its Neuropathy from HIV, but we are looking at all options.
The feet/leg thing is annoying because its changed my activities, i haven't been to the gym in a month. I havent gone out and socialized because i'm constantly over-stressing with this. There isn't many folks I know with HIV that have this issue. I feel like the lone ranger most of the time.
I wish you luck Bunny, you and me.
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There are medications that can help PN. Ask your doctor about Gabapentin (Neurontin). It helps relieve nerve pain and is quite effective.
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@Ann
Thank you Ann.
@mikeyb39,
Thanks mikey, But my doctor didn't advised me any MRI, CT scan.
Get will soon.
@buginme2,
I am already taking PN medicines.
I am panic and frustrating all of you. I am stopping here. Looks like I am crossing my limits
Once again thanks all of you.
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Bunny, you're not crossing any limits. Keep posting about your PN if you feel the need. That's what this forum is here for after all.
It doesn't hurt those of us who no longer have to take meds like stavudine to be reminded that not everyone is so lucky. My heart goes out to you that you've had to endure being treated with a drug that many of us would never have to use in the 21st century.
I sincerely hope that your PN lessens in time. Hopefully you've stopped the offending drug quickly enough. At least now that you've stopped taking it, the PN shouldn't get worse.
And again as I said earlier, please do not stop taking your meds. Completely stopping your meds won't make a difference to the PN. Your current combo is much better than the one that had stavudine in it. Untreated hiv still kills. PN is terrible, but it won't kill you.
((((((Bunny))))))
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Almost I get relief from PN. Minor Pains, Tingling in fingers, headache still there. Anyway I feel a little relief.
I am continuing medications of PN & ART.
Surprisingly I did not get any side effects from AZT yet.
Thanks for all giving me courage.
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Good to hear you're feeling a bit better and the AZT is being kind to you. I got my fingers crossed that you continue to improve. Hang in there!
Hugs,
Ann
xxx
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You might try some acetyl-L-carnitine (sometimes sold as Alcar) at a dose of 1,500mg, twice daily. This can lead to nerve improvement. It can be pricey though. It must be the acetyl-L type of carnitine, not the other type. This has been shown to help nerves recover from d4T neuropathy in a few small studies. The other stuff you are taking has not.
Also, give it time, it make take 2-6 months to see an improvement.
- matt
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@Ann
Thanks.. :). You helped a lot
@newt
I will ask my doctor on my next appointment for acetyl-L-carnitine.
I will update to you the same. Is MRI Scan really required for me?
here in our city MRI scan is too costly.
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I am so sorry you're experiencing this, I'm currently experiencing it without any meds whatsoever (yet). Walking around like a peg leg.
Apparently its a common side effect of HIV, however I may be wrong???
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Once again I got a big pains in my legs. Pins in my right hand. Is any offending drug to cause these pains in my current medicines. My doctor suspected on Lamivudine. Is my legs going eventually disable?. I have pain in my right side neck also.Am I any imminent danger?
And one more drug added to manage pain.Enzoflam(diclofenac sodium 50 mg, paracetamol 500 mg, serratiopeptidase 15 mg.)
And my doctor was called a Test ESR along with WBC, Haemoglobin
Results
ESR = 20
Haemoglobin = 13.4
Lympocytes = 40
WBC count = 5800
List goes long. I listed some of them
Sorry for troubling again and also sorry for my English.
I am very scary, Please help
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Hi Bunny.
sorry you are still going thru this. Since its in you neck, hands, and leg, possibly it could be some type of pinched nerve going on in your spine. Has that something your doctor considered checking?
my left arm and feet have been getting a little better since i switched my medication, the electric shocks in my leg have improved quite a bit, but my doctor advised it can take several months for nerves to heal and at times can get worse before it gets better. My legs and calves get real sore, especially during the day, but I think its because the way i've been limping around due to my sore feet.
Sounds like your doctor is doing all the tests, has your doctor checked your sugar levels and Thyroid as well? I'm sure he has, but just throwing the question. Also they checked for any heavy metal toxicity such as lead and arsenic
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Hi Mikeyb39, How are you? Sorry , it's too late to answer you.
I was called randomly 5 to 6 blood test
1. HBsAg
2. VDRL
3. L.E.T
4. Haemogram
5. CD4 Count
6. BSL (R), BUL, Creatinine, Cholesterol
7. Chest X-Ray ( I don't have any cough&flu, but I advised)
All reports are normal. My major blood is going away for all these tests. I am visiting every alternative day to my doctor
I was added one more drug to my list
Duzela-20mg (http://www.buckadaypharmacy.com/Duloxetine/20/)
But no luck, I am still not walking comfortably 100meters long.
I am very Thankful to my employer ( Director ) for his great support ( Finance & Moral ) in this painful situation.
I am going to access FREE ART drugs supplying by Indian Govt. from tomorrow.
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I get My MRI scanning report today.
All reports are normal except one.
In my MRI report one Impression reads as
1. Disc protrusions at c5-c6 level effaces the ventral aspect of the subarachnoid space, indents the ventral aspect of the cervical spinal cord and causes mild cord flattening. No cord edema. The disc also abuts bilateral exiting c6 nerve roots
Its still 5 more days to see my neurologist. Please clarify me.
Bunny
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Hi Bunny,
In a simplistic term from me, it sounds like a herniated disc of some sort. Other than that the diagnosis sounds like a foreign language to me...haha.
Are you feeling any better these days? My Doctor finally took me off all NNRTi meds and things are starting to get back to a 'little' normal. My right foot doesn't have much pain at all, but my left foot still sore in the ball of my foot and sole of my foot and the ankle/calf hurts. I think it is healing though, but crossing my fingers still. my doc said it can take several months to a year for a nerve to completely heal. It definitely got worse before it started to get better once the Viread was removed.
I'm sure you're neurologist will be able to give you more information.
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Hi Mikey....
Thanks..
I am not feeling any pain In my both legs except ankles & pain in upper back area and neck is still there. But I am feeling uncomfortable ( tightness) while walking. Some times i feel like electricity shocks in my thighs.
And I was dropped all my PN drugs except Alpha Liphoic Acid, Acetyl L Carnitine.
Waiting to see my neurologist.
Thanks again