POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: mecch on June 20, 2010, 06:43:02 am
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What does neuropathy feel like? All the descriptions I read don't describe what I feel. It started about 6 weeks ago when I went on a PI - Prestiza and Norvir.
Symptoms -
1) always hurts to walk barefoot or in socks - feels like Im walking on bone. Not a shooting pain - just feels uncomfortable like every surface is made of concrete.
1) always feels like the day before I did a walkathon - I haver permanent muscle aches, sore tendons. Walking, standing. Its uncomfortable but NOT shooting pain and not tingling either. Some days or hours worse than others, but always have it. When its really bad I feel like I could loose balance.
I see my ID at the end of next week. Just wondering if these symptoms sound familiar to anyone???
Best
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For me, my feet always feel cold, but are normal temperature to touch. My PN started after I began therapy. ( about 5 months , I believe) The first time I noticed it, I was siting in the living room watching TV. I started feeling( out of nowhere) a mild to moderate tingling and numbing. Just like my feet were asleep. I also want to mention, that about two weeks before the tingling, and pain started, I was tripping over my feet. The feet were not hitting the ground right.
It never went away after that, it only got worse, before it got better. At one point, it was so bad, I couldn't drive the car, The soles of the feet hurt so badly , like ground glass embedding itself in the bottom of my feet. It was also in both hands,and halfway up to the elbows
There were also sensation of burning feet, and the same time the feet felt like they were frostbitten.
I spent a lot of money in 2004, trying to find a comfortable pair of shoes.
With shoes on, It always felt as though there were small pebbles in the shoes. Things eventually got better, But the tingling, the numbness, and mild to moderate pain still exists.
The neuropathy was at it's worst, when my t-cells were at their lowest. It was less intense as the t-cells rose.
Currently I don't feel the need to take anything for it. Walking is not a huge problem for me right now.
My bigger concerns, is the slight pain I get in the hips. Do a search here for PN, you'll find a lot more.
Ray
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1) always hurts to walk barefoot or in socks - feels like Im walking on bone. Not a shooting pain - just feels uncomfortable like every surface is made of concrete.
What you are describing with the feet sounds like it could be a loss of some of the fat padding at the soles of the feet; this is not uncommon with HIV.
I sometimes get very mild "pins and needles" on the feet and on the hands up to the elbow, it could be PN but if it is it's very mild. My doctor has all his HIV patients undergo a "Nerve Conductivity" test and mine came out with normal results.
I find that when I exercise it greatly improves the symptoms, which might indicate that it also has something to do with blood circulation.
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JRE - you had PN before you went on HAART, correct?
My situation - seroconversion and almost directly put on HAART.
Doubt I have suddenly lost fat on my feet. Haven't lost it anywhere else :) the reverse :)
Well, we will see what the doc says. But I dont have pins and needles either.
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Neuropathy can be a tricky thing because there are many forms of it .
I have had small nerve neuropathy since the early 90's . It began in my feet then began to affect different parts of my body as time passed . Some days are better than others and I never know where I will be hurting next but thankfully I don't get it much these days in my feet .
I used to get really freaked out by my phantom pains but have come to terms with it in the last few years . I used to think if I was hurting all over the end must surely be near but have learned it is painfull but its not killing me .
Small nerve neurapathy according to my neurologist is pretty common in HIV patients but under diagnosed and written off my by many doctors as some thing imagined by the patient .
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And how to treat it???
How many times will I have to switch combos. This happened just with the newest combo - prezista norvir.
What about all that carnitine and stuff like that? supplements to prevent mitochondria damage.
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But I dont have pins and needles either.
You had described getting "tingling" which is what I mean when I say "pins and needles." These things can get hard to describe verbally but aren't they the same thing?
A Nerve Conductivity test can diagnose if it's PN or not, at least that's what my doctor said.
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no, I said no tingling, and no pins and needles.
yeah I guess the doc will figure it out, but I think this is one of the hard to diagnose and treat things.
maybe its not pn at all, but its something.
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no, I said no tingling, and no pins and needles.
Sorry, I misread it.
You should ask about the Nerve Conductivity test, it's pretty simple. They connect wires and then measure the currents going through.
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The nerve conductivity is a good test and the standard for most PN diagnosis .
In some cases such as mine with small nerve PN the conductivity test is not always of value . The way to diagnose small nerve neuropathy is a tissue sample of the skin .
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Intersting thread. I started having problems coincidentally right after my diagnosis (and before meds). Everything Iver read indicates that PN develops slowly over time, but in my case it seemed to come on rather suddenly.
My symptoms mirror JRE's, the most pronounced is the sensation that my feet are cold, but yet are warm to the touch. I also get the "frostbitten" feeling. less pronounced are the buring and pin prick sensations. the symptoms come and go, I can go several days without any symptoms, but then suddenly I get them. If I wear any sort of shoes(especially tennis shoes) it seems to flare up, sometimes I have to walk around with my tennis untied, or worse have to take off my shoes while im driving due to the pain. Sandals pose no problem, and I am now evolving into wearing primarily sandals, flip flops.
I didnt have any nerve conductivity tests, my doc just prescribed me Neurontin when I discussed the issue with her. BTW, Neurontin is a vile pain in the ass, all it does it make me so loopy that all Iw ant to do is sleep, I would rather put up with the pain which for now is minor than to take that horrid drug.
As a side note, Smoking can also constrict the vessels in your feet which may produce symtpoms that mimic PN.
-Will
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I was having pretty severe sensations in my extremities before starting HAART. In fact I think I commented on a couple of threads about them. My hands and feet were continually cold and when I would take a hot bath both extremities would begin feeling prickly and tingly for roughly an hour or two afterward. All of this has since gone away but it persisted for probably 2-3 months. I figured it was just poor blood flow because most people seem to think the PN comes as a result of the medication more than the disease.
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I figured it was just poor blood flow because most people seem to think the PN comes as a result of the medication more than the disease.
In general that's true, but there are several different types of PN, and while less frequent there is one type that is just from HIV infection itself.
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In general that's true, but there are several different types of PN, and while less frequent there is one type that is just from HIV infection itself.
None of them heal, however, right? I'm no longer having any of those issues.
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JRE - you had PN before you went on HAART, correct?
Hi,..
No, I didn't have any signs of PN prior to starting HAART. It was about 4 or 5 months into having started that issues with PN began. I also had the nerve conduction tests done shortly after it started. and the PN was confirmed then.
Like I mentioned earlier, first it was tripping over the feet, then it started. All in a matter of about 2 weeks.
I want to repeat that besides the numbness, tingling, and cold sensation, there was an awful lot of pain. And I mean foot pain.Like will, I was prescribed Neurontin for it, but got very little relief from it. I also believe that this was just about the time the Tinnitus started, or shortly after.
Any discomfort that I am having in my feet now ( besides related to PN) is also related to the fact that I lost a lot of padding in the bottom of my feet.l I believe Inch, else has mentioned something on this also.
Some days are worse than others, but I am glad it's nowhere as bad as it was in 2004.
Ray
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I wanted to add this also , But I'm sure you've already read this from the lessons :
http://www.aidsmeds.com/articles/Neuropathy_6910.shtml
Ray
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None of them heal, however, right? I'm no longer having any of those issues.
Was I diagnosing you personally?
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As an alternative to consider, and perhaps relevant to the switch to a PI, is a peripheral vascular condition, a characterisitc of which is pain, weakness, numbness, or cramping in muscles from decreased blood flow.
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THANKS NEWT -
And how do you know this is linked to PI?? Is this personal experience or can you give me like to research or something so I can show my doc.
Many thanks.
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None I can put up a link to that give access without subscription, or are not nerdy nerdy basic science that you need to be a physiologist to understand properly.
But, note, there is a wealth of research on PIs and an effect on cardiovascular physiology and pathology, and while the studies reported tend to be the ones concentrated on the biggie bad outcomes, eg type 2 diabetes, heart attack etc, there is enough content within these to make any decent physician wise to the possibility of peripheral vascular effects.
On the basic science, it seems highly likely that ritonavir affects important aspects of vascular metabolism which stop blood vessels relaxing and contracting properly. At least this is true for pigs, since most of the basic science been in pig tissue.
Personally, I know if I take an extra ritonavir, as sometimes happens, my fingers go like they've been outside in the cold. Ritonavir metabolism is very personal, so I wouldn't jump to the PN conclusion without looking at the circulation option. It's easy for your doc to assess this with a posh blood pressure test on your ankle too.
- matt
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Ok thanks man. Amazingly precise.
(Oh by the way I read scientific English and have access to all scholarly journals online) ::)
What is a "posh blood pressure test" - push? or you mean posh ironically??
I really would prefer to have a lower side effect profile than this! The only reason I went on the PI again is that Intelence gave me a rash!
So far its been
Sustiva - crazies
Reyataz - rash (pretty bad)
Intelence - quite a long run, then a rash (not so bad but doc said I should have no side effects)
now Prezista
Is there a non PI based combo I might inquire for? Would it be nuts to try PI without the boosting?
Of all the side effects so far, Id say rash is better than painful feet and crazy mind!
Newt - you are a wealth of info - many many many thanks for generously sharing it so precisely.
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Are Isentress & Truvada not available to you?
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Not sure about Isentress this year.
It wasnt available when i started, not sure why the ID wanted me on a PI again this year, but he was correct that the intelence rash would go away.
All good questions to ask him, of course.
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Answers to questions to ID:
1) Isentress was approved only 2 months ago here, so he switched me today to Isentress.
2) Norvir was probably the cause of my mobility issues - and if so, they should go away within 2 days of stopping.
3) Another tiny blip to 80 rather than undetectable - 2 possible explanations:
a) I was reinfected
b) I have hay fever.
I responded that I have horrible hay fever this summer so he said it was that.
This is the 2nd time I have had a blip and 3rd time he explains unusual numbers by saying it could be reinfection. I got just a subtle little itsy-bitsy-poo of gay sex prejudice. He clearly takes reinfection seriously - I'll have to ask him next time to state his professional opinion on it. Cause he said "an explanation could be reinfection but I can't know because I don't know your sex life", at the same time it was clear he was not inviting me to discuss my "sex life".
There's kind of a weird interpersonal tension whenever I meet this guy. Its neither negative nor positive energy, just sort of charged.
Also I try not to look at his strange hair treatments - dye jobs?? plugs? toupee?? Maybe he thinks I am what I am, a queen judging his beauty treatments. I really do try NOT to look, but can't resist taking a peak.
Well, I'm just glad hes a big expert and can quickly apply all his experience and I don't have to fret too much. Full confidence in his professional knowledge though his bedside manner is well-known to be a bit off.
Also THANK GOD I live in a country with great medicine and great insurance to pay for it all!
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Well, docs are entitled to their opinion but reinfection does not cause blips it causes surges. 80 v 30, 40 or 50 copies is well within the margin of error for any viral load test. good about dropping the Norvir.
- matt
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If every time you blip he's bringing up reinfection without even asking if you had unprotected sexual encounters I'd be looking for a new doctor. What a jackass. "Well you could be reinfected"...yes because I did attend that raw pozzie orgy where I was the gangbang bottom. What a dick. Sorry Mecch but if you're not pissed off about that I'm pissed off for you.
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Why would he think it was due to hay fever? This might have an effect on CD4 counts but why would it have an effect as far as blips?
Blips can just happen, they have been shown to be clinically insignificant.
Siciliano has shown that residual viremia is not actively replicating virus but rather virus coming out of reservoirs. It's probably a good thing to have an occasional blip, it likely means the reservoirs are shedding more virus.
"Blips" in HIV Treatment Are No Cause for Alarm
SMALL INCREASES OR “BLIPS” IN HIV LEVELS DO NOT SIGNAL MUTATIONS LEADING TO DRUG-RESISTANT HIV
LINK:
http://www.hhmi.org/news/siliciano.html
http://www.hopkinsmedicine.org/Press_releases/2005/02_15_05.html
http://www.thebody.com/content/toparts/art50467.html
http://www.hopkins-aids.edu/q_a/patient/laboratory_tests/cd4_counts_and_viral_loads/viral_load__blip_.html?contentInstanceId=527951
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Inchling is completely correct about blips. I've had two of them in the past four years and they've never worried me, and I don't even get retested the next month. One should always keep in mind that you're only being tested every 3-4 months. If you could see lab results on a daily or weekly basis you'd probably see frequent low number VL blips.
And yeah, I don't see why it warranted a hay fever connection comment, much less the reinfection one. I find that a bit odd and potentially troublesome frankly.
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1) He said he has noticed blips during patients' hayfever periods and maybe it has to with some effect on shedding. He said with some conviction - oh if you have hayfever, that probably explains the blip.
2) I do bareback with HIV+ guys -- maybe about 2 a month now for several months. But since he didnt invite me to talk about this, we didn't, but in any case he checks for STD when I get my labs.
Comment of this: I thought I couldn't expect a doctor to "OK" barebacking - that they are generally bound to the conservative pronouncement that reinfection is a risk. Or that barebacking in anycase is inadvisable for STD reasons. I thought it is only HIV+ gay barebackers who have come to terms with the low risk???
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[size=9pt=Comment of this: I thought I couldn't expect a doctor to "OK" barebacking - that they are generally bound to the conservative pronouncement that reinfection is a risk. Or that barebacking in anycase is inadvisable for STD reasons. I thought it is only HIV+ gay barebackers who have come to terms with the low risk???
The hiv doc that my bf and I share knows we bareback, and we have his blessing. However, I don't think we would if we were barebacking with random pozzies, because of the risk of other STIs (not reinfection). We use condoms outside our relationship.
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80 is not a blip, it's within the margin of error for a test after "undetectable". 800 would be a blip, or 500, but not 80. (bring me my whip and white coat).
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Ann got at what I was thinking, barebacking other pozzies to me isn't really a fear of reinfection, but a fear of acquiring Hep C, Herpes, Drug resistant syphilis, etc... All things that could worsen the current situation. If you're both honest with one another about your hiv infection and you're both seeing a doctor I would imagine that you know if you have anything else and disclosing that information would also be par for the course. I'm to the point where I frankly just don't believe in reinfection amongst those of us who are on meds.
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(bring me my whip and white coat).
Hang on, just let me put on my nurse's cozzie on first.