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Author Topic: concerning peripheral neuropathy  (Read 3396 times)

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Offline PasadenaGuy25

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concerning peripheral neuropathy
« on: July 17, 2008, 02:48:49 PM »
Hello All,

SHould I be too concern with the peripheral neuropathy?  I have been taking reyataz/norvir/ and truvada and one of its side effects is P.N. I occasionally get tingiling of my fingers and toes every one or two times in a day for maybe 3 times throughout a month, which i know is normal. But should I be concern that in the future the i will be in pain from PN? I havent' given it too much thought since my meds have been great so far (on them for 4 years)? any thoughts? I'll also visit my doctor next month and will ask her too adn whatever new info i get i'll pass it on.

Offline atlq

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Re: concerning peripheral neuropathy
« Reply #1 on: July 17, 2008, 03:12:22 PM »
PasadenaGuy25,

Funny your post should be the newest, cause I just logged on to find some info on PN myself.I have been dealing with tingling and some numbness in the hands and feet for a couple of months now and though it is better some days and worse others, it doesn't seem to subside. I am on Kaletra and Truvada, and have learned that there is a slight risk of PN from the FTC in Truvada (though the "D" drugs, DDI-D4T-DDC, seem to be most implicated here). I have a neurology appointment tomorrow and will pass along any info I get!
ďKeep up the good work....   And God bless you.Ē
  --  Sarah Palin, to members of the Alaskan Independence Party, 2008

Offline BT65

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Re: concerning peripheral neuropathy
« Reply #2 on: July 18, 2008, 01:24:46 PM »
Well, I've had PN since the early/middle 90's, when all those awful meds (ddI, ddT, etc.) were being prescribed.  I'm also diabetic, and for a few years didn't maintain any kind of control over my sugar, so it's just gotten that much worse.

You both will know when it's time to start some meds for it.  I remember days when we would bang our feet against walls to try to get the pain to stop.  Luckily, there are meds that can treat PN well.  For instance, I'm on Neurontin.  Some people say they can't tolerate that, but it works well for me (sometimes it can cause drowsiness).  I believe doctors also use Cymbalta to treat PN, though I've never been on that.

Good luck to you both.  If it's not causing a lot of problems, I wouldn't worry about it.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline atlq

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Re: concerning peripheral neuropathy
« Reply #3 on: July 18, 2008, 07:48:36 PM »
Went to the Neurologist today....He performed all the nerve tests...tuning fork, balance, pin prick and asked a infinitely long series of questions....He feels that the numbness in my left hand may be due to ulnary (sp?) neuropathy, basically saying I have squeezed the nerve near my funny bone too hard, and that it is pretty common...my feet however may be a different problem, with PN being the leading candidate for blame...I gave a lot of blood for testing to rule out b12 deficiency, diabetes (though my fasting glucose has always been normal), thyroid problems, and a "few other possibilities" which he didn't elaborate on and I didn't inquire about...no need to worry about mere possibilities...once (and if) those things are ruled out, PN from HIV disease will probably be the diagnosis. The only real treatment? Keeping my HIV under control.....hummmm...maybe I didn't need to go to this appointment after all...lol...
ďKeep up the good work....   And God bless you.Ē
  --  Sarah Palin, to members of the Alaskan Independence Party, 2008

Offline Miss Philicia

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Re: concerning peripheral neuropathy
« Reply #4 on: July 18, 2008, 08:12:57 PM »
I have PN too, but only a little.  I've taken 900mg/day and hour before bed, as my PN is more noticeable at night plus it's mildly sedating.  I have toyed with the idea of seeing if I taper off it what happens, as I've been on it now for 8 years as I would assume my PN issues are residual from the first line HIV meds I was given in the 90's.
"Iíve slept with enough men to know that Iím not gay"

Offline allopathicholistic

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Re: concerning peripheral neuropathy
« Reply #5 on: July 21, 2008, 09:48:53 AM »
occasionally get tingiling of my fingers and toes every one or two times in a day for maybe 3 times throughout a month, which i know is normal. But should I be concern that in the future the i will be in pain from PN?

I usedto get that too-- but only if I gripped something too hard. ... The issue went away when I was switched to a different HAART regimen. (I was on Reyataz , Truvada & Norvir just like you)

Frequency was about the same too.

(Edit to say: I had no toe issues/feet issues, just fingers)

But should I be concern that in the future the i will be in pain from PN?

I won't answer this question. I will only speak about my past experience.
« Last Edit: July 22, 2008, 06:43:06 AM by allopathicholistic »

Offline Lorenzopier

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Re: concerning peripheral neuropathy
« Reply #6 on: July 23, 2008, 10:05:33 AM »
My symptoms with PN only happen when i am on HAART therapy.I have been able to stop the PN by using a balanced B-25 complex.It contains 125mcg of B-12.I add additional folic acid, biotin and niacin to the B-25 complex which definitely enhances the effect  B-12 has on stopping the PN.I have tried higher dosages of B-12  however i do not notice additional benefits.Please consult your physician before using supplements especially if you are on meds because of possible interactions. 
« Last Edit: July 25, 2008, 04:58:38 AM by Lorenzopier »

Offline AndyArrow

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Re: concerning peripheral neuropathy
« Reply #7 on: July 23, 2008, 06:02:16 PM »
You should have your doctor check for a vitamin B deficiency.

If is is PN caused by your HIV meds or the infection (prolonged us of Flagyl & Dapsone have been also shown to be factors):

Amitriptyline is used sometimes and most people have really good results is Gabapentin (neurontin) they didn't really work for me so now they are trying Lyrica.

Good Luck,
AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline PasadenaGuy25

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Re: concerning peripheral neuropathy
« Reply #8 on: July 24, 2008, 06:46:10 PM »
Hello, 

Thanks for all of your input. 
When I  was first placed on meds,(reyataz, norvir, truvada) they told me the side effects  of it.  PN being one, I really didn't give much thought to it because I didnt understand its gravity.  I was told that it might cause some tingling in the toes and fingers and perhaps they told me the long term effects of PN, but I never gave it to much thought because i thought it wasn't a major side effect.  After looking at this carefully and reading more about PN, I didn't know that it can eventually lead to pain and numbness. Again I am pretty sure my doctor told me, but I was always under the impression that it ONLY caused tingling of toes and fingers.  I dont have any pain or numbness on any limbs, just the occasional tingling that goes away for 5-10 seconds.  I guess I shouldn't worry about it too much since its not causing me problems, but its good to know what options I have to fight this if it ever gets to that point.  I'll visit my doctor next month and bombard her with these questions. Again, thanks all!  :) 

Offline jkeith

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Re: concerning peripheral neuropathy
« Reply #9 on: July 29, 2008, 01:14:58 AM »
Is there anything at all that can be done about the PN.  I have it in both feet, the right foot being worse, and some days are worse than others, and food intake will on occasion affect it.  I also have problems with my left hand especially the thumb, and index finger being numb.  Is the best solution a med switch?  And if so what doesn't cause this side effect.  I have seriously considered not taking the meds at all anymore, and I haven't missed more than one dose on occasion in the last 19 years.  The Ultram, and Ibuprofen have no affect on any pain anymore, and I refuse to take the Vicodin just because that is the one drug everyone seems to get addicted too.  I was thinking about maybe just dropping the Truvada after reading the entries.  Is anyone on Prezista, and any reports of it and PN.  I was thinking maybe I could just drop the Truvada, and stick to the Norvir, and Prezista.  I have started taking Cinnamon in case it was a sugar thing, but the doctor keeps telling me my fasting glucose is within range.  I have also tried Alpha Lipolic Acid, but that didn't do anything.  I am really starting to get desperate.  I have had problems with my neck, and recently had an MRI.  There was a herniated disk, but in the past that finally healed.  My doctor wants me to go to an orthopedic surgeon, but I really really really don't want surgery on my neck, as a matter of fact I have put off even calling the Orthopedic doctor for a month.  I have not heard good things about neck surgery, and would rather wear a cervix collar the rest of my life.  My doctor also has me on monthly B12 injections, but those only have a minor affect and is usually gone before I leave the office.  I am also on the Neurotin/Gabapentin 900mg 3x daily.
« Last Edit: July 29, 2008, 01:18:31 AM by jkeith »

Offline Miss Philicia

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Re: concerning peripheral neuropathy
« Reply #10 on: July 29, 2008, 01:28:27 AM »
jkeith, I'm on Prezista, Norvir and Truvada but my PN predates those meds.  Is your PN something brand new or have you had it a while?  Mine is all from meds I took in the 90's, though probably a couple of years delayed in it being diagnosed.  It's certainly not gotten worse from anything I've taken since 2000.

There should be other things they can offer you if Neurontin is not working, but they always start with it because it doesn't react to any HIV meds that I know of.  What has your doctor said?
"Iíve slept with enough men to know that Iím not gay"

Offline AndyArrow

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Re: concerning peripheral neuropathy
« Reply #11 on: July 29, 2008, 03:32:45 AM »
jkeith,

Please talk with your doctor before stopping any of your meds. 

Since you've been on meds for 19yrs it is far more likely that those older drugs you took factor into your PN.  Also, the infection itself can be the cause of PN.

I hope you and your doctor find the right treatment for you.

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline Lorenzopier

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Re: concerning peripheral neuropathy
« Reply #12 on: July 29, 2008, 05:53:32 AM »
Hello jkeith,

The primary nutrient that works well for my PN is B-12.Vitamin B-12 definetely is more potent when it is combined with all of the water soluble vitamins.Try adding at least 1 grams of vitamin C in divided dosage along with the entire b-complex family.
« Last Edit: July 29, 2008, 06:36:49 AM by Lorenzopier »

Offline jkeith

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Re: concerning peripheral neuropathy
« Reply #13 on: July 29, 2008, 11:55:43 AM »
jkeith, I'm on Prezista, Norvir and Truvada but my PN predates those meds.  Is your PN something brand new or have you had it a while?  Mine is all from meds I took in the 90's, though probably a couple of years delayed in it being diagnosed.  It's certainly not gotten worse from anything I've taken since 2000.

There should be other things they can offer you if Neurontin is not working, but they always start with it because it doesn't react to any HIV meds that I know of.  What has your doctor said?

Hi and thank you Lorenzopler, AndyArrow, and Philly267.  Yes some of the PN is from past treatment, Zerit, and the DD4, or DDT (the chalky white tab chewed before meals), but my meds were switched in January and it has gotten drastically worse.  Before Jan it was viracept, viramune, combivir.  I didn't want to switch, until I finally gave in to pressure from the doc.  I hate messing with something when it is working (viral load has been "zero" for 7 or more years and tcells have been above 500).  Sometimes it is so bad that I can barely walk some mornings.  I am also on Cymbalta which I forgot to mention, but I absolutely hate the stuff, and it has little to no effect.  I will try to stay on the meds, but if it gets any worse I will talk to the doc again.  Also I will try the over the counter B vitamins, and C and see what happens.  Thanks for the help.  I truly am getting desperate. 

Offline Miss Philicia

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Re: concerning peripheral neuropathy
« Reply #14 on: July 29, 2008, 12:10:15 PM »
jkeith, I *REALLY* feel for you -- trust.  PN is just wretched when it's acting up.  I'm just skeptical that your current meds are increasing it, but certainly I could be entirely incorrect.  Prezista is only 2 years old and I know plenty of people on it, but I've just not encountered any PN complaints either locally or on this board.  And none are listed for Norvir -- I just don't think protease inhibitors are involved.  And PN isn't listed as a side effect for Truvada either

jkeith, why then do you go and say you're going to try over-the-counter stuff instead of marching into your doctor's office and being assertive and insistent that what they are doling out to you is NOT working.  I mean, it's totally odd for your PN to increase IMO -- maybe there's some other odd cause (?)  I'd just be careful, because as you can read here taking too much of some Vitamin B can actually increase your PN.  At any rate, from what you just described in your last post, if your PN is that bad your quality of life is really deteriorating and I'd be much more insistent with my doctor.  PN just seems like one of those things that for many sufferers there's no magic bullet, and so it's harder to treat but eventually they find something -- not to make it disappear but to adequately lessen it -- but what works for one person doesn't always work for another.

Best wishes,

David
"Iíve slept with enough men to know that Iím not gay"

Offline jkeith

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Re: concerning peripheral neuropathy
« Reply #15 on: August 02, 2008, 04:06:17 PM »
Okay maybe I will talk with the doctor again.  I was doing heavy B-complex with C yesterday, and granted it has only been one day, but it really wasn't cutting it.  I didn't get out of bed this morning because of the PN in the feet.  Something is definitely wrong, and the index finger and thumb on my left hand are totally numb this morning.  Generally I am not a complainer, and will tolerate some of it, but I am going back to bed now due to the PN in my feet, and the numbness in the left hand, as well as a really bad sinus headache.  This is unusual behavior for me.  I generally do not nap once I am up.  Granted I may not get up until 12:30 since I work second shift, but I rarely take a nap.  I just feel like there is way too much pain with the sinus headache to do anything other than sleep today.  Oh well another wasted weekend with the dishes undone.  I will talk to the doctor on Tuesday, but I am not holding out much hope.  He increased my Cymbalta dosage when i had already told him it wasn't working.  I know he knows best, and went to school for medicine, blah blah blah, but the Cymbalta has been two months now without any change.  Thanks for the help.  I will have to let you know what he says.

Offline 100proofBrandy

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Re: concerning peripheral neuropathy
« Reply #16 on: August 02, 2008, 04:58:27 PM »
Ive had trouble with my legs and arms for years and always thought it was just that i worked standing for 8 plus hours then I got a desk job and noticed I was still having issues I finally asked my doctor and she did some tests and said it was pn now I'm on 300mg of neurontin I just started it doctor said it would take a about 4 days to work I swear my legs hurt worse at first but now they just kind of ache a little mostly at night before I take the neurontin. I sure wish I had spoken up sooner could of saved some pain :(
The person you educate today maybe the one you save tomorrow :)

 


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