POZ Community Forums
Meds, Mind, Body & Benefits => Lipodystrophy & Metabolic Problems => Topic started by: minismom on November 11, 2007, 09:27:18 pm
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I had a conversation tonight with mini to see if she could explain what she was feeling in her legs. What I found out was that her legs never stop hurting and she can 't remember when they started hurting, only that they always have :( I also grabbed her wrist really tight and let her hand go numb and then let go so she could understand what I meant by "tingling". She said her hands do that sometimes even when I don't grab her wrist. Then she told me that her arms and fingers hurt when she has to write in school. We homeschool and try to keep writing to a minimum due to her dyslexia / apraxia and CP. Whew! Ok, here's my question (finally): For those of you who work, how do you get around the pain issue while writing / typing / ect.? Are there pads that you use to take pressure off of the arms? Are there any kind of exercises or stretching that you have found helpful? What about sitting? She find it easier to sit on her knees. I'd think that would make it worse, but she says it makes it better. Again, any helpful strategies? I appreciate anything that you can share.
Mini's mum
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Hi Minismom,
I don't have PN (yet), so I can't advise on that issue. As for sitting at work, for now all I require is a well-upholstered chair with padded arms. The loss of fat in my buttocks makes sitting on hard surfaces (church pews, bus seats, etc.) very uncomfortable, so I need a chair with a lot of cushioning. Padded arms are really important, because my elbows are so boney now.
The only advice I have for PN is what I hear from friends who have it. Many of them use medical marijuana to ease the "jolts" that they feel. I live in San Francisco, California, so this is legal here. I understand that it may well not be something you want to try with a seven-year-old, even assuming it's available where you are, but I offer the information just so that you know what's out there.
I know that in the U.K., a doctor is currently developing a marijuana-based drug specifically for neuropathy. He's been conducting trials in people suffering from M.S., because neuropathy is a common symptom of that disease. The preparation he's developed is a metered-dose, sublingual spray that can be administered as needed. I recently heard a radio report on this, and patients in the study claimed that they get almost immediate relief.
So that's my two cents, for whatever it's worth.
John
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One medication that I have had success with is Lyrica (specifically approved for neuropathic pain). It is generally well tolerated. Lidoderm patch can help some of the superficial issues and is well tolerated with a minimal side-effects.
I tend to "sit on my legs (one bent under and the other off the chair). I alternate often thereby changing the pressure points. I also have an invalid cushion ("donut") that I use in my car. I try to avoid exacerbating factors if possible.
One could change from medications that are "more neuropathic."
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My guess is it's the zerit causing this. Did you ever answer why her doctor keeps her on this? I know that you said there are resistance issues but there are a lot of new meds that have just come out that I would think you should be willing to look at.
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I just started getting neuropathy in my left foot, right about me toes.
It hurts burns tingles...I guess its neuropathy, cause i did have this before, but never
on my feet..
Its a bitch because I love to walk..
I am not on the same medicine you are on.
Iam on Kaletra, (which I will change) and Truvada which I just got on....
I was put on neuron for the pain I suffered in my legs way back..
But now it has come to haunt me again on my left foot..
I really don't like taking neutron..because of the side effects, I feel like i am stoned and look it too...... :(
Hopefully theres other meds out there that have less side effects for this condition.
Wishing you success in finding what works the best for you...
:-\ Hey wish me luck as well.. ;D
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I only take my neurontin an hour before going to bed. My PN only seems to act up at night, so I'm fine during the day and of course this prevents me from dozing off all the time. Still, I know I've at times taken it during the day, just to "play" with my copious amounts of excess medications I store in my treasure chest. I really don't find it that stonerish, unfortunately -- or of course I'd be grinding it up and snorting it. It sure ain't like a good benzo...
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Thank you all for your responses. Don't think marajuana is real option, though. Mini is only 7 ;D I've written down the other medications that were mentioned so that I can talk to her PID about them. I'm also asking for a nerve conduction test and for her MRI testing (scheduled for 1/2/08) to include not only the myelin but also the soft tissues (as suggested by another poster). As to why Mini is still on Zerit. Very simple...I'm scared to death to change her meds. We watched her waste away from birth until almost 2yrs old. She was put on numerous medications and combos that wouldn't reduce her load. I spent 5mths with her in the hospital suffering and wondering if she was going to live. Then wondering if it was best if she didn't. We love her so much. She's on the meds that the genotyping said would help and they have. She's been undetectable since 6/02. I don't want her in pain, I don't want her to suffer from the neuropathies, but I want her here.
Mum
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Mom, I still think you should reconsider the Zerit thing. I understand your fears, but I also assume you most likely aren't aware of the many new HIV meds that have just come on the market. I speak from experience, as someone with multiple class med resistance issues, and I'm also on several of these new meds. Feel free to PM me if you wish to discuss them, but suffice to say they are the best meds I've ever taken in 15 years both in terms of strength to suppress HIV (I did not respond to obtain an undetectable VL until these new meds came out) as well as lack of serious side effects. In fact, I'll go so far as to say they have NO side effects, at least not that I've experienced (though one of them I've only been on now for five days, but still... the others have been for 18 months) and I've always been prone to some fairly bad experiences from meds.
I'm not doctor though, so I don't know what the standard of care is for a child versus an adult, but I still think it's worth your while to initiate the discussion with your daughter's doctor, and to research your options before hand so that you don't go into this discussion not knowing anything. Treatment options are like night and day compared to 5 years ago frankly.
Additionally, any lipo and neuropathy damage she now has is most likely there to stay. That's my experience from being on it, but the main point is to get off of Zerit ASAP so that these issues don't get WORSE.
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Mum,
I agree with the Philodendron here. Seriously have that Zerit reviewed. There are a number of newer, safer drugs available which have equivalent if not better powers to suppress viral load.
Zerit is really, really nasty shit.
MtD
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It's on my list of things to talk w/ her PID about. But, I swear the first day she's off Zerit (or any of her meds), I'm going to have a nervous breakdown. :'( The thought of doing anything that may put her at risk brings me to tears! If we changed her meds and she developed a VL, I would never forgive myself. If it was me, this would be a no brainer,honestly. I'd switch meds. But the thought of screwing up my child's life.
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Mum,
I appreciate your concerns here, but lots of poz bodz change medications without affecting their undetectable VL's.
Why only the other day our own Aunty Doxie (Dachshund) changed from Kaletra to Prezista. I'm sure his undetectable VL won't be affected by that change.
MtD
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I cant believe Zerit is still prescribed,it is so early 90s. The horrid side effects of this drug far outweigh any benefit it may deliver. I also cant believe no one has ever sued the manufacturers of Crixivan and Zerit. But what do you expect with Drs still telling patients its the virus not the drugs turning them into ghouls.
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Agreed. They withdrew that evil drug Hivid (ddC) I assume for similar reasons and I wonder why they keep Zerit around. Hivid was a MAJOR contributor to peripheral neuropathy for those of us that had to endure it throughout the 90's, just like Zerit.
And I now read things like that ddC had bad interactions with 3TC and everyone was so clueless with treatment back then I'd not be surprised if I was on the two together.
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Mini
Your daughter is already on an off-label combo for children (ie a PI - Kaletra + an NNRTI - Sustiva)
It is important to have a long gameplan, which is, to suppress the virus or otherwise preserve her health tll she is big enough/old enough to use adult formulations (5-7 years perhaps)
It really is worth considering whether:
- Sustiva + Kaletra + 3TC, regardless or nuke resistance, will be sufficient. The first two are really strong drugs, and 3TC, well it is not straightforward (do ask)
- Tenofovir is an option. While tis true there are not enough studies to say use this drug, it is gaining popularity in the UK. A trail on paediatric tenofovir will report soon.
- Abacavir, deffo worth a look, strong, and similar unstraightforwardness to 3TC.
If you need a contact for an opinion happy to provide (top US-based HIV paediatrician, likely to comment eg on resistance out of the goodness of her heart but clearly not promising...).
The d4T, while it may be the best option resistance wise, has the potential to permanently disable your daughter. This is a difficult call, choice of drugs.
If you have Mini's genotype and/or phenotype resistance test reslts and can post the info from it you may well get an informed comment on possible drug choices. There are people here who know about these things.
But one thing is sure, Mini's sure got a great mom. :)
- matt
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Again, you all are so sweet! I wish I had you guys when we started this journey 7 yrs ago. I'll have to ask her doc to send me a copy of her genotyping. It was done in 2002, but is still in her file. When we go to the doc, I know it's our turn as soon as the nurse walks out - mini is the -only file that's 6 inches thick! I asked when they'd put it on microfishe or something cuz it looks so pathetic. Also going to ask for a nerve conduction test. I know it's not pleasant, but I think the answers it can provide will be worth it. I'll keep you all posted. Doc should be calling this week with mini's latest lab results and results from her RA, lupus and sickle cell tests. I'll let you know!
Mum
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Mum,
Best of luck to both you and Mini. I hope you get some good news.
I'll be thinking of you and your little girl.
John
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Does Mini have access to an occupational therapist? One that specializes in sensory issues might be able to recommend something as well.
Sharky
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hi everyone, please i will like to know what Lipodystrophy is it a medical condition or what please forgive my ignorance.
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hi everyone, please i will like to know what Lipodystrophy is it a medical condition or what please forgive my ignorance.
Here's your answer
http://www.aidsmeds.com/articles/Lipodystrophy_10726.shtml
There are more links on the page. Look at the Lesson Index on the right side of your screen
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Sharky,
Mini has a rx for an OT, but the OT's around here are a pain in the butt. They see her for a while, then decide she's hit a "wall" w/ her progress and drop her from treatment. Her PT, however, works with her on all kinds of different issues. She even builds stuff in her garage for mini to use and keep if it helps. She's been w/ us since mini was 8mths old. Because of our business, dh and I have access to many OT's who work w/ children younger than mini, but have still been able to help w/ suggestions. Mini is also going to see a developmental opthamologist to give us strategies for helping her w/ her dyslexia, apraxia, and motor planning issues.
mum
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I read this thread because I used to have to wear sandles. I couldn't wear regular shoes because of the peripheral neuropathy caused by Zerit. My pain was increasing gradually overtime. Eventually I realized the culprit was Zerit and my doc changed meds. I had mentioned the discomfort to my doc....but he doesn't feel it, and I thought I could tough it out and that it would get better overtime. The opposite happened. The pain got worse. Zerit can cause nerve damage(peripheral neuropathy). It is well documented. I tired Zerit and suffered bad peripheral neuropathy like your daughter is currently suffering. I switched. The pain stopped. Some of the nerve damage took time to repair but it is repairable. And the change felt so good. While on Zerit it was predictable walking. That all changed after stopping the Zerit. The change was noticeable. There are drugs with effectiveness which dont cause the Zerit side effects. Many of us have Zerit horror stories and also recovery stories after we stopped Zerit.
In my case I stopped Zerit over 10 years ago and currently have 900 tcells. The World Health Organization has cautioned using Zerit in the poor countries because of the predictable side effects. There are effective alternatives to Zerit. When I read your description of your daughter's side effects I was saddened. The fear of changing meds when your viral load is controlled is understandable.
After stopping Zerit there are some supplements that can help with repairing the nerve damage. I was told I had permanent nerve damage. I tried the supplements and after a relatively short period of time , about 45 days, I noticed less tingling when I walked. Overtime the healing continued and I was able to wear shoes again. For a period of time I had to wear only sandles because for foot pain. There is hope. Best wishes. Hank
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Thank you, Hank. We've put in several messages to mini's PID over the last 8 days and so far she is MIA. Newt has given us a list of meds to discuss with our PID. I'll put in yet another call to her tomorrow.
Mum
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Hmmm . . . no return call after 8 days? Perhaps it's time to look for a new PID. That's longer than any doctor should take to respond to a patient with a serious condition.
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Now 10 days MIA and still counting. Unfortunately, there are two ID's in my state. One is serving in Iraq. She has NEVER done this before. I'm not quite sure what's up. Dh's real optimistic - says we should start checking obits. I'll be putting in yet another call to her today. We'll see what happens.
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I work in state government (17 years now) and when folks see me from other agencies, who maybe haven't seen me for a while, I hear the "oh are you okay?" question more often than I'd like to. Sometimes it's asked in front of other folks and it gets embarrassing. Granted, the people asking the question are as_holes for having asked a question like that in public.
I was on Zerit for a good number of years as one of my combo meds. I've been on my current combo coming up on 3 years. Made a change almost 4 years ago when I told my doc I wanted off Zerit. The replacement for Zerit was Trizivir. I was already on Reyataz and Epivir. Stayed on Trizivir for about a year until I decided to stop AZT (part of Trizivir). Substituted Viread for dropping the AZT and changed to Epzicom. Current combo of Reyataz, Epzicom and Viread working well and I haven't noticed an increase in the lipoatrophy. Haven't noticed a return of my sagging face either... :(
Yes, back in the day I had chubby cheeks (both sets). Now I don't have chubby cheeks (missing both sets!). Now when going to a meeting I look and sometimes race to a padded seat chair. Even my new desk chair I'm sitting on now at home took several different trips in search of a very padded seat. Well worth the extra bucks...
I remember last summer when a rather pushy person in my building had to gush and ask me what weight loss plan I was on. Stupidly the only thing that came to mind at the time was "Oh you don't want the plan I'm on" and I walked away. LOL I'm not good on the fast replies but give me a couple of minutes and I can usually come up with a snappy answer. :D
The last time I bought shoes I actually went down to a 9 1/2 narrow from a 9 1/2 medium as my feet have lost some of their padding. So if any one finds my cheeks please send them home. Thanks! ;)