Hi everyone! I have something to let you all know about being proactive in your HIV care. True enough HIV is no longer a death sentence, but it is a life sentence. If you are not aware of the medication that you're taking and possible serious side effects, it could be detrimental and very very deadly!!! A month ago my doctor changed my medication from Isentress and Truvada to Triumeq. At first I thought there were no changes. I kept going on with the new medication. My very first side effect was loss of appetite, the next thing that I noticed is that I started feeling groggy and tired. That was nothing unusual because I felt that way all the time. As time progressed I began to have itching and numbness in my hands, feet, forefinger and middle finger. Next I had numbness in my left and my right hand then it just went haywire! I started itching and burning everywhere, I couldn't catch my breath, and I was just overly anxious! I couldn't breathe so I decided before I go to the emergency room, I'm going to try to take some Benadryl because my face was swelling. Everywhere I scratched, I had begun to blister.
I finally got in the position where I could rest and before I went to sleep I called my doctor's office and told them what was going on so that they could get that message first thing in the morning and maybe they could tell me what to do. Come to find out everything that I went through (hypersensitivity reaction to one of the drugs, Abacavir, in the combination pill I was taking) could have been deadly for me, but thank God it wasn't! I'm still here to tell you to not only get tested, but to be involved and proactive in your HIV care — as well as read the prescription information they give you about possible serious (adverse) side effects. Most side effects like this are rare, but it is still good to know about them in case it happens to you — like it did to me! It's important that you pay attention to your body because your doctors are only going to know what you tell them. And if they tell you, "no I don't think this is this" be adamant and make them listen to you!! It's your body and you only get one!! If you make the mistake giving someone total and complete control of your body, then that's your loss. We did not ask for this disease, but we have to make the most of the situation that we're in. It is important that we take care of ourselves the best that we can. We need to rely on our own internal judgments about our medications and our bodies. Most of all we must pray unceasingly! We must watch for symptoms so that we can catch signs of any problems before it gets to the point of hospitalization, having to take antibiotics or having to be in an ICU bed for 3 to 4 weeks at a time!!! I implore you please, please get this!! It is not worth your life!!
I have cried because I feel like I'm talking and everything I'm saying is falling on deaf ears. When your own family won't take you seriously it hurts! When people from your own family will not receive you when you speak, I know you may want to give up but you can't! I have wanted to give up many times but have to tell myself that if I can help only one person, I have done just what God has required of me! The same applies to you. If I can do anything to help you right now, it would be to tell you to please take care of your body. Because it is the only one you have! Don't leave anybody else in charge of what God has given you. I just ask, right now, that you pray for strength for all of us who are dealing with this virus. This virus can be deadly if we are not proactive and consistent with our medical regimen and knowing what our bodies feel like when there are changes. I said that I wasn't going to be advocating a lot on my Facebook page. Because of what happened to me, my soul felt obligated to say something and to be proactive in everything that I do from now on as far as my medical regimen goes. If you experience any changes or side effects with any of your medicines, please share!! There may be someone else who is going to the same thing with the same medication. I thank Maria HIV Mejia-Laing for sharing her difficulties with side effects. If I had not known she was going through what she was going through, I would not have known to take a closer look at what was happening to my body. I love each and every one of you and I pray that you listen, take heed and do all that I ask. Get tested, get treatment, if needed. Practice a consistent medical regimen. Pay attention to your bodies, stay informed, and always consult with your physician!!
Editor’s Note: For a complete list of HIV drugs, including common and serious/adverse side effects, as well as special considerations for women, see our HIV Drug Chart (Overview)
Hiv meds
I was just talking with some woman when I realized. I never felt like I had HIV; I just felt the same except I take my meds each evening.
After changing my meds over the last year I feel tired, sick, muscles sore, depressed, aggrivated. I have fevers and night sweats too mentiona few.
I never thought to address this with my docotr as I thought it was just me aging. ( AT 45 lol) . After the conversation I realize I need to address changes in my moods, energy, and routines I can not keep up with that used to be easy. This may be an easy fix or not I am happy this blog is here too remind me I know my body best and checking and abnormal symptoms should always be addressed no matter how silly I think i am being. You are right I only have body and its up to me to listen to it and share any changes or concerns with my docotr Thank you . Once again I realize I am not alone in side effects and they are real. Blessings
Self-care is Healthcare
We must pay attention to our bodies! We get warning signs when things go wrong! I'm so happy you decided to be proactive because it proves that HIV is a case by case basis! I'm always advocating for my physician to see me as a human, not just a 15- minute appointment slot. I need to know my doctor is deeply invested in my healthcare. On a sadder note, I also know what it's like to reach out to family, only to be met with silence. I know they feel embarrassed by me being transgender, but they are so rooted in oppression that we absolutely don't talk about me living with HIV. I guess what I'm saying is, we can choose our family. I know I really needed to read your words. Thank you for sharing with us!!
Atripla
I started taking Atripla in 2005 or 2006. I had never had any problems with resistance or the meds not working with any medication I took...so Atripla was basically a choice of convenience...one pill and I was good. In 2012 I started to feel sick, depressed, tired and just bad all the time. I also could not get my blood sugar to come down no matter what I did. The doctors all thought it was because I wasn't adhering to my insulin. At the end of 2014, I hopped a Greyhound to Washington state. Super sick. When I got here...I couldn't find my Atripla, and was seriously ill. Checked into the hospital where they did blood test, lung Xray and other tests. They determined that I had serious kidney infection, Ecoli, and they were getting ready to release me with some antibiotics. I asked about the Xray...oops, I forgot about that...really? So, pneumonia too...despite a vaccine. They checked me in and handed me over to the ID doctor. I try to be honest about everything even when I am not doing what I should be...but I really couldn't find my meds. I had only been off of them for some days....but in NC I was without for 2 weeks. They conferred and consulted...got the head of the prescription department (I know that's not the official title, but you know what I mean). I was told that they couldn't find a way to get my Atripla. It was too expensive and my Medicaid only was valid in NC. They "found" 4 pills to send me home with and gave me one dose the last day. Handed me a prescription....Rite Aid...the medicine is $400+. I asked about Ryan White...the ID doc, whose specialty was HIV, never heard of it, nor had that prescription expert...I knew I was in trouble. They urged me go come in for an immediate follow up. I did. No solutions, not even trying to find out why all this was happening. At the end of the visit, this doctor scolded me, "You stopped taking your meds and now you have AIDS." That was it...hmmm. I immediately found another doctor who informed me that my viral load continued to be undetectable and no, I didn't have AIDS. Stayed on the meds, but still felt awful. My triglycerides, enzymes, and cholesterol were sky high...and my A1c was 12....and average of 300-350. So I go to HIV is Not a Crime in Alabama and met Sean Strub. He was talking about the trials for Atripla and the other less toxic version. He shared his health problems and a light went on in my head....I looked up the side effects for Atripla and was astounded....all of my serious issues could be caused by two of the drugs in it. More research, hearing other stories...I took the papers to my doctor. Mind you this document is the actual paperwork that comes with the drug itself. He told me to stop looking on the Internet and was basically treating me like I wouldn't know...I am not a doctor...but I bet you what I am an awesome researcher! I insisted on futher tests and wanted to change meds. The blood tests for the liver, though don't see things like fatty liver. I went to a gastroenerologist who actually listened and considered my information. I got a liver biopsy. Not directly caused by my meds, but indirectly. Atripla was keeping me insulin resistant, keeping my cholesterol, tryglycerides and enzyme high. I insisted on changing meds. He tried to give me another one pill a day med....with one of the same drugs in Atripla. I refused. So, he gave me 2 refills of Isentress, Prescobix, and Edurant. Just over a month and my blood sugar was normal. All the other number reduced by 100+...I felt better it was a miracle. I got a call from his office not to long ago and he wanted me to change to another one pill treatment. Why, who knows...well that not correct, I knew. You see, those of us living with HIV are constantly treated like we are not responsible. That we have to have the simplest routine, because if we don't we are going to mess up. I pointed out that I was still undetectable, and that my CD4 count had gone up from the 400s to 786...I couldn't get it up over 453 for YEARS! Needless to say..I am still on the same regime...healthier than I have been in years. Were it not for talking with Sean and sharing our experiences...I would have never suspected a thing. We do have to stick together and confer amongst ourselves...no, most of us are not doctors...but we know our bodies and our health because we have to stay on top of it. HIV is one of the most ill-treated illnesses and we have to stand together and speak with one voice until they hear us!