POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: kumbakkid on July 19, 2006, 12:16:26 am
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About 10 years ago, I began Crixivan...had stomach problems, got skinny everywhere but my stomach--I looked like a pregnant straw!!! Finally I was put on sustiva--four years ago? Oy!! Who knows??? Had all the bad sides--tiredness, nightmares that scared me and my poor long suffering cat, who sleeps with me, anger mgmt issues, etc... Then last May, I was put on combivir, truvada,kaletra...felt crappy the livelong day....then, last Thursday, July 13 was my Bastille Day. I officially seceded from the Aids meds. And I feel fantastic. Some days I'm downright perky!!!! Haven't told my Dr., will see her at end of August. But meanwhile, I plan to get more zip out of life. Also my Dad is fading with Altzheimers and now I can get up early to see him in the morning, the only time he halfway knows whats going on. I only speak for myself. I don't want to tell anyone what to do. We all have to make certain decisions. After years of deliberation and prayer, I feel in my heart I have made the right decision (for me)!!! I am swimming longer, bettter...my whole body is singing a happy song of freedom...the essence of my very being tell me, "yes, yes, yes"...maybe later, hopefully much later, something without the awful side effects will be available. If I feel much better I'll be a bloody Ayn Rand character!!!
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Sorry guys, I do have a question...would anyone else share their experience in quitting meds. My viral undetectable, my t cells sky high, I know one friend who had been off his meds for years and says he's fine...any other long term staying off meds stories...?
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Hello,
I stili think its something that you need to discuss with your doctor. The sooner the better. This site offers some information on STI's .( Structured treatment interruptions) There are times when I feel I could very easily not take my medications, but I am not prepared for the alternative right now. I can certainly respect your decision in stopping meds. I know I will ponder this thought some day myself. I am also sorry to hear about your father. It's a tough thing to watch a family member dealing with Altzheimers.
Click here : http://www.aidsmeds.com/lessons/STIs1.htm
I wish you the best/Stay in touch-------Ray
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Please discuss this with ur doc.
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Hi guys, I have 2 family members in Africa that just recently tested + for HIV. No access to meds. I wanted to help but I don't know how. I called for meds and I was told that I can't get without a doctor's prescriptions. Can anyone help me out please?
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Well Diag 9 years ago. I am n0w 50 and have been on different meds since day one. I started to do my own STI ( was great to feel great) . Now Dr. says "Numbers" are low and wants to put me on some new "killer" meds. ( I did Sustiva for a month and other than wishing I had access to this drug when I was a teen doing all sort of drugs because the high was close to a hallucingenic) I just bought the new poisons.. but you know I much rather feel better , enjoy my days and if I "GO" a bit sooner, which no one can really say. I am stopping the poisons and looking to enjoying life without worries of Oh My God What Are My Numbers!!! Afterall if you have to feel like a chemo patient every day of your proglonged life what really is the point. So I wish to say Bravo! To those who determine that the living a life of side effect management is not worth the extra time ( and who is to say you will not get liver failure etc.. from the meds anyway ) keep a healthy lifestyle, look good and enjoy cause there is so much out there waiting to "get you" For me no more cusing each time I take a mouth full of Glaxo Stock Holders Income Producing Poison.. Doctore used to tell us in the 50's thac cigarettes were good for you??? So I honestly believe if you have to leave this Earth then leave feling well and take the money spent on Meds and meds to counteract the meds and go on a great vacation. Live well die when God calls you. Thanks.
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Kumba,
I took meds for nearly two years and developed resistance. At the end of 2004, I ceased treatment becuase I have "compliance issues", I have a tendency to miss doses. For most of 2005 I was cool. My VL went up (from undetectable) but seemed to settle at about 30,000. My CD4's floated around the 400-500 mark with my % sitting at respectable 28.
I was pretty chuffed.
However, recently (June) my numbers have taken a bit of a dive. My VL is going up and my CD4's are dropping with the all important % dropping like the NASDAQ when Dubya opens his mouth. I'm symptomatic too. Skin stuff, candida, lymphodenopathy you get the picture.
Should you stop treatment? Well, if you're numbers are really good and the side effects are intolerable it's my opinion that you should consider it. Obviously if you do cease, talk to your doctor and make sure you get your bloods monitored every couple of months rather than every three or four. Also remember that at some point, without medication, the virus will make a comeback.
Ultimately it's your choice, but I guess you know that. Best of luck with what you decide and keep us informed!
Fondly,
MtD
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S--T!! :) Something like that has been in my mind for a long time. I've said something to my MD about it a couple of times. Her comment was about not enough data or evidence to support something like that. I've read in POZ about it when we used to get it, and in other magazines.
Only reason I haven't pushed it because IF (there's that danged 2-letter word) things went bad, then how would it affect my children (25, 19 and 13 and 2 grand-daughters).
Having these young ones doesn't change my interest, but right now, they do affect my decision. :-X
My numbers have been good for years. Up from "less than 50" in 1994 and now to over 700, and my VL "undetectable" for 6 years at least.