|To Spleen or Not to Spleen
Jun 16, 2003
I have been HIV Pos since 1995 and have had no real issues other then one major bout with Shingles and the oh so common problem of general fatigue. However that all changed three months ago, when I started throwing up Blood and was admitted to the hospital and found to have ulcers and was diagnosed with ITP.
Let me digress for a moment with some symptoms I was having prior to being diagnosed with ITP. Over the coarse of the past year my body weight has ran the coarse of the chart, from dropping form 198 pounds to 165 pounds in less then six weeks, I am often unable to keep anything down, the moment I eat the food would find its way back out of my system following the path it had entered my body. Then my weight jumps back up into the 190 ranges. Major muscle reduction and an overall issue with performing task such as walking four blocks much less working out, my concentration has become so poor that I have trouble recalling the name of a store, or a phone number. My Fatigue has become so overwhelming that I have trouble at times simply opening a jar of pasta sauce and I love pasta so this is a huge issue with me. I suffer from extremely cold fingers and toes. My sleep has become non-productive in the fact that I am not getting Good Sleep if you understand what I mean. My testosterone is in the 350 zone and from my understanding that is a little low for a 35 year old male such as myself. My V-Load is in the up 60,000 and my CD-4 count is in the mid-300s.
Okay back to my question, My Drs are suggesting to me that I undergo having my spleen removed. I am a little fearful of this as my Immune system is already low and my Fatigue is truly causing issues with the quality of my daily life. My insurance covers the IVIG and it provide to work well with me and I wonder if this is an option that can work over the long time spectrum? Also I wonder if I start taking testosterone if that will aid in my fight against the fatigue?
Meds that I am currently on are as follows Kaletra, Videx, and Viread. I also take as needed, which is about twice a months, Lorazepam 2mg for panic attacks.
I greatly appreciate any advice you could provide.
To spleen or not to spleen
Response from Dr. Frascino
Dear Spleen or Not to Spleen,
Lots of issues to discuss here. Ill try to hit the major ones:
1. HIV Infection. Are you under the care of an HIV/AIDS specialist? If not, you need to be. Im a bit concerned about your 60,000 viral load. A resistance test (genotype and phenotype, if possible) could be very helpful in determining if your current regimen needs to be changed. Also, there are some drug-drug interactions with Videx and Viread requiring dose modification. Your HIV specialist should review these issues with you in detail.
2. Testosterone. Consider checking your "free" testosterone. Thats the active component. If low or low normal, yes, supplementation could definitely help. Use the topical gel (AndroGel). You dont want to be getting extra "shots" with low platelet counts (to avoid bruising, etc.).
3. ITP. IVIG can be very effective, but the response is usually transient. Consider "WinRho SDF." Its a particular type of IVIG with a clinical indication for treatment of ITP in HIV-positive children and adults. Your doctor will need to test you first to make sure you are "Rho(D)" positive. Its a blood test having to do with your blood type. Other treatments for ITP can include steroids, but these are immunosuppressive, and therefore best avoided if possible and not recommended for long-term use, unless absolutely necessary. They can, however, be very useful to get platelet counts back up quickly when necessary.
Splenectomy is major surgery; however, it too can be very effective in treating chronic severe ITP. I have seen patients who are now more than 10 years out from their surgery and doing remarkably well! Before doing anything however, you should consult with a hematologist (specialist in blood diseases), who is also knowledgeable about HIV, to thoroughly review all your various options.
4. Fatigue. Lots of possibilities here, including: a. Your HIV infection, which, at present, may not be under very good control b. Low testosterone c. Inadequate sleep Could this be stress related? d. Anemia. Have you had blood loss due to your ITP. Whats your hemoglobin level? If less than 14 g/dL, anemia may be contributing to your fatigue. e. Psychological causes. Depression, stress, and anxiety can all be associated with sleep disturbance, fatigue, inability to concentrate, and a variety of other symptoms. f. Infections. Not only opportunistic infections, but also other more routine infections, like sinusitis, can be related to ongoing fatigue.
5. Pasta. Pasta with a good red sauce is one of the 5 major food groups. If you continue to have trouble opening the sauce jar, come to my house for dinner. I make my sauce from scratch!
OK, I hope this gives you some direction as to what needs to be done and what your options are. First see your AIDS specialist to review the issues discussed above. Then see the hematologist to discuss options for ITP treatment. If you are still responding well to IVIG and choose to stay on that for a while, consider WinRho-SDF. Ultimately, if splenectomy is necessary, please know that it can be very effective.
Write back if you have additional concerns.
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