POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: thinkertwo on June 10, 2009, 10:34:14 am
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My muscles are waisting away especially on one side. It is hard for me to walk up stairs and for distances. My doc's still think I have a rare motor neuropothy but I question that every day....I try to excessive but it wears me out, I thought it could be a side effect of Travada, Reyetaz and Nourver....they will not change my meds....Is anyone else waisting away? I've tried protein powders and dietary supplements... I eat well and don't drink...
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Does it still exist? Sure. I had it, twice, but the last time was in 2002 and I gained everything back within ~2 years or so, but I was on testosterone (nandrolone) injections for about five years, and I had at least one protein shake each day, probably two during the really bad weigh loss periods. Keep in mind, however, that my viral load was never suppressed during this time and I had a lot of GI/absorption issues due to HIV activity in my digestive tract, I assume.
But whatever, I'm confused as looking at your older posts just 2 months ago you were complaining about having a bloated stomach. IIRC wasting has an official criteria of 15% weight loss from a baseline number, meaning your weight previous to the purported wasting.
I have a friend in my local support group who currently has wasting, and in fact I just saw him last night. But he's been infected for ~20 years and I just don't know if I've heard of it in someone with your recent diagnosis and high cd4 count, and suppressed viral activity. I will assume that neither have your doctors.
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I am a bit of a newbie but I would have to say, yes, wasting still exits. Although my doctor never uttered the word, I without a doubt fit into the CDC definition below, which is why I've been prescribed Marinol and Human Growth Hormone among other meds.
"HIV wasting syndrome: Findings of profound involuntary weight loss of greater than 10% of baseline body weight plus either chronic diarrhea (at least two loose stools per day for greater than or equal to 30 days), or chronic weakness and documented fever (for greater than or equal to 30 days, intermittent or constant) in the absence of a concurrent illness or condition other than HIV infection that could explain the findings (e.g., cancer, tuberculosis, cryptosporidiosis, or other specific enteritis)."
(source: http://www.thebody.com/Forums/AIDS/Lipodystrophy/Archive/HIVWasting/Q155698.html)
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I am wasting too. I can't seem to keep on weight. well gain it> I've come in at a whopping 118. I've change brands of testosterone gel to see if bring up my testosterone will help. I've been bitching about this in the nutrition forum for a few weeks now. I am undetectable and have great cd4 of 1800 something. I don't smoke crack so I just don't get why I am not looking like I used to.
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Personally I would only do injections if I seriously had wasting. Androgel is OK if the low testosterone is only causing depression. Also, choose your protein supplement carefully -- look at something like Isopure which will give you a higher amount of it, but doesn't have sugar in it. Also you need to hit the gym, and of course make yourself eat. Eat ice cream, use butter, use whole milk... worry about lipids later, or at least that's what I did with my doctor. If you have appetite problems are you smoking pot or taking Marinol?
I'd be interested in people here stating what their weight was upon diagnosis and what it is currently, and over what period of time this loss happened, as well as whether you have depression and/or anxiety issues which also often suppress appetite.
edit: if you go the injection route once you gain some weight back THEN you can switch to the gel. Also, there's a good blog on HIV wasting issues by a LTS named Nelson Vergel you can fish around in: http://survivinghiv.blogspot.com/
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I was a buff bodied 5 11 190lb guy before my ARS. Infection was 11/19/08 and after ARS and pneumonia, I weighed in at 175-180 1/26/09 depending on scale (it wasn't the same scale as before). When I went on atripla on 2/25, I was 171lbs. I was definitely depressed for a couple of months. I have been approaching 180 lately but stopped lifting weights and only play tennis. I eat whatever I want now with butter and cream and bacon on top. I still don't cook like I used to. Mental outlook has been greatly improved.
Matt
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Losing weight from PCP is not HIV wasting, it's just losing weight when really sick. Please read the definition in the thread's third post, specifically the wording about "in the absence of a concurrent illness or condition other than HIV infection that could explain the findings":
http://forums.poz.com/index.php?topic=27518.msg339758#msg339758
The reason I'm a stickler about this subject is it's very normal in newly diagnosed people (and this doesn't mean that there aren't any that don't genuinely have HIV wasting) but there's more often an alternative explanation, but a new patient panics with thoughts of "OMG I have AIDS and will waste away!" You know, like how every small bruise is suddenly a massive outbreak of KS.
Obviously none of us can offer a diagnosis of HIV wasting over the internet, so if you're doctor isn't agreeing with your own creative self-diagnosis than either there's no "there" there or your doctor is a slacker. Take your pick. Any decent HIV specialist however should have no problem making the diagnosis. Correcting the problem is often a larger problem, but like I said I dealt with it twice and, gained the weight back, and it's not returned now for 7 years so it's quite doable, but the patient has to expect to do more than pop a pill or drink an infrequent shake.
It should also go without saying that there's a sizable population of gay HIV patients that would love to convince their doctor's to prescribe testosterone, when it's not really needed. Everyone likes muscles.
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I have experienced wasting twice -- but only when my viral load was not suppressed.
Also, I never experienced any sort of muscle ache. If you aren't exercising your muscles will disappear no matter what you eat or how much testosterone you take.
I have to wonder why you don't believe your doctor and if that really is the case then it's time find a new one.
AA
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I'd be interested in people here stating what their weight was upon diagnosis and what it is currently, and over what period of time this loss happened, as well as whether you have depression and/or anxiety issues which also often suppress appetite.
5'9" 118 at diagnosis which was a couple of months after converting. Usually in the 123 range. Turns out I had undiagnosed celiac which had been causing me bad GI issues for the past few years(stupid me never went to the doctor about it since I had no insurance). Celiac + HIV enteropathy = bad business. Was diagnosed, gave up gluten, and all the pain and gastro porblems went away in two days. Seriously felt like I had a new life after that period. Started taking protein shakes but no weight gain at all. Decided I would join a gym and started resistance training couple of months ago. When I began working out my appetite went bonkers and now I have the urge to consume food all the time. Currently at 130 and still gaining. Had a bit of anxiety after diagnosis but that went away in a week.
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Yes, Wasting does exsist and I have seen many people with it. Read Daves Blogs and talk to Hiv Speacilists. It is something that is very hard to deal with and there are treatments but most are transient at best. Hang in there and excercise is with the right nutrition is about the only real way to battle Wasting. Even then there are people that have it so bad they either just deal with it or if they have the money get the treatments, such as fillers for their face.
Good luck and don't give up on trying to find wether or not it really is wasting or some underlying illness that hasn't been detected.
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Please don't confuse wasting with lipoatrophy -- they're not the same thing.
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I guess I'm using the wrong terminology. My weight has not changed much. My arms and legs have shrunk and my torso has grown...Doctors attribute this to my nerve/ muscle condition (motor neuropathy)...I feel like I am waisting away and have little strength; this is probably in part due to this unusual neuropothy. If I exercises my muscles get weaker and smaller and I get very exhausted....my CK levels are high so I am loosing muscle and it is not coming back...thank god I like to eat because the muscle is just being replaced with fat (at least it is something). All other numbers are good. Anyone hear of a condition like this or going through something like this?
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Hey Thinker,
I have experienced something similar, but not exactly the same thing as you describe.
Mine was caused by a combination of medications I was taking, which caused the CK (or CPK) levels to rise dramatically.
My muscles were wasting away and I felt weak. My arms and legs felt like they were made of lead and I eventually even had trouble walking or shifting my car.
Luckily, when we discovered what was happening, the doctor halted some of the meds and I began to feel better after a week or so.
This was relatively recent. I have just started going back to the gym after a four-month hiatus because of this situation.
I know your situation is very different, but the symptoms your are describing sound frighteningly the same.
I hope you can get to the bottom of this issue and find a solution. Keep me posted.
Even though mine was just a brief taste of what you are experiencing, I think I can understand what you are feeling.
HUGS,
Mark
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Very interested in your situation...Always had a gut feeling at least part of this was meds. related. What meds were you on? What did you change to? Was it a dosage problem or interaction? At this point I am thinking of demanding a change even though the docs are not in favor. The fear is I could develop other side effects that will compound my situation (other peripheral neuropathies on top of my motor neuropathy; motor neuron syndrome???). I will see the doctor on Wednesday this week and would like someones experience to bring to the table. If you could contact me or write me it would be great. Can I email you?
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Mark I sent you a message and added a request in my post below. I have questions and think you can help me...If you could: please.
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I've had the opposite problem... I've gained huge amounts of weight/fat since my diagnosis (about 50 pounds, all blubber.) But in that time I'm sure I've also lost muscle mass.
I'm now on Androgel and looking forward to seeing if I can slowly reverse the trend.
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Hey Thinkertwo,
I PMed you.
M
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update: Thank you Mark! and everyone for offering their situations to help me with mine. The plan now is to wait for the insurance co. to approve and then administer the IVIG treatments for strength. After this and during the process my doc will be looking over my latest neurological tests, biopsy, emg, spinal...and will try a drug switch from Travada, Reyetaz and norvear to Atripla. He said we don't have much to lose and should not cause any peripheral Neuopothy in addition to the Motor Neuopathy. If I don't like it or there is no change, he said I can easily switch back. He also took a test to see the level of drugs in my system (may be causing muscle problems)....
Bottom line, we have a plan...Although we have had many and none have worked so far, it does give me hope....
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I have been taking Atripla for 8 days now. Only had my first rash several days ago. It didn't itch at all but was very embarrassing. I asked a LOT of questions and here's what helped me. Ok, don't laugh. But, I use diaper rash over the affected area, along with Benadryl. The rash was gone in 7 hours. I dont' mind the drunk feelings because it's not so bad. It's like having a nice little buzz at work, and the dreams are incredible! I love the dream part. I actually look forward to going to bed now. Try Destin diaper rash and Benadryl in the morning the rash shows up. You may smell like a sweet little baby's bottom but it was worth it to me in order to make the rash go away fast!
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I wasted but only in light of a potentially long term infection and AIDS defining numbers.