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Jackie__Blue
Legend

Reged: 01/20/07
Posts: 1186
So when they say you should be on medication....
      #247025 - 08/12/09 08:05 PM

what are they really are saying...is you should be on medication, but what we tell you to take.

9 months ago I stated in the ID clinic of a University Hospital. I was on AZT, Videx EC and Reyataz when I got there. I tolerated it well and I had a CD4 in the upper 400's and an undetectable viral load. In my very first appointment the doctor pressed me to change my regime because it was old and had too many side effects. I was extremely hesitant because it had taken me years to find a combination that I could tolerate. Besides the medication they wanted to start me on was Truvda, which has Viread, a drug that made me the queen of puke. He also wanted to put me on Norivir to boost, another drug that I had tried in the past and did not tolerate well. I did not want to change what was working. He was adamant that I needed to. So we compromised. I would switch. I would not take the Norvir, but I would up my dose of Reyataz from the normal 300 mg to 400 mg to compensate.

On my next visit, I didn't have new numbers, nor would I. I get the blood work done the day of the appt. and get the results at my next appointment, 3 months later....but this doctor (a different one) was adamant that I must take the Norvir. I told him of the agreement the other doctor and I had made and was VERY CLEAR with him that I would not take the Norvir. I was just one pill too many. His reply was that without the Norvir I would have virological failure and since this was salvage therapy (first I'd heard or I never would have changed at all) I had no other options. I knew he was lying to me, trying to scare me into submission. That just pissed me off.

The next visit was supposed to be with the nurse practitioner because I would not see that doctor again. There was a problem with the scheduling and we ending up with this Dr. again. I feel for the poor medical student. She mentioned that the notes had said the doctor wondered why I did not want to take the Norvir. I made it clear to here this was a closed discussion and I also made it clear how I felt about that doctor. She must have told him, because he came in was very quiet and left in about a minute.

Move 3 months forward to today. I have stopped all medication. Partly because of insurance issues and the limited ability to get medication while my COBRA got straightened out, but more because I'm tired of that low level Nausea that just won't go away. It stays with me everyday. Mornings are worse. I feel that I'll be sick any minute, but thankful don't. Sometimes I get waves of nausea in the afternoons. I probably spend about 30 -40% of my day feeling this way. It's the Viread.

Today, the nurse practitioner and I had a long talk and while I understand the risks involved with Videx I also know it was something I could live with that worked. So we agreed I'd go back to my old Combo. She had to go out and talk to her attending. Guess who came walking back in with her. HIM! He immediately announced that what I plan to do was a BAD idea. Amazingly he said I had options...didn't say that 3 months ago.....and wanted me to think about taking one of the newer drugs and while we let me think about it lets take the test required for one of these drugs, I must look it up, something about the CCR%?

Anyway it seems that it's just fine that I stay off medication and not start my old regime until I've had a chance to think about it and they get the test result back. (6 weeks at least) Just goes to show there is not always the urgency that they sometimes want you to believe.

We all know our own body's better than any one else. Don't let them push you into something you don't really want to do. You have to live with these choices not the doctor. I really wish I had not changed to begin with. Why did I ever think it was good to mess with something that was working well?

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SuperAnxious
Member

Reged: 07/04/09
Posts: 14
Loc: Los angeles
Re: So when they say you should be on medication.... new
      #247066 - 08/15/09 08:58 PM

So are you not taking any medication at all right now? Isn't that dangerous as the virus may develop resistance when you restart the regimen again?

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Jackie__Blue
Legend

Reged: 01/20/07
Posts: 1186
Re: So when they say you should be on medication.... new
      #247067 - 08/15/09 09:26 PM

No I'm not on medication and if you had read my post you'd see that the doctor has told me to stay off medication until I come to my senses. I already have resistance issues. So what's your point? Do you have some sage wisdom to pass on?

I'm waiting with baited breath to hear more from a guy that isn't even HIV positive, worried about a non-issue about getting HIV and certainly has no clue what it's like to be living with this for the last 12 years.

I was looking for input from people that have been dealing with this disease and their doctors for a while. Go back to the Am I Infected forum were you belong and leave me alone.



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August69
All Star

Reged: 03/22/08
Posts: 79
Re: So when they say you should be on medication.... new
      #247079 - 08/16/09 02:42 PM

I must start off by saying that I have always found your advise to be very useful and grounded. Such an inspiration, and I thank you.

After reading your post I am very thankful that I live in Canada. We may not have the best medical services available at the drop of a hat, but we do have some awesome doctors, who care more for the patient, and less for their wallet. It makes me question whether or not the clinic in question in your post was getting a kickback from the drug company to push a particular drug. Esp if the old combination was working. Does not make sense to change unless there were other health concerns (high liver enzymes or whatever).

I am sorry to hear that you have been going through this type of problem as well as problems with your insurance. I sense you are a strong individual and will not let them walk all over you without questioning their motives.

I wish you health and wellness. My thoughts are with you. HUGS

Brad

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Jackie__Blue
Legend

Reged: 01/20/07
Posts: 1186
Re: So when they say you should be on medication.... new
      #247082 - 08/17/09 08:56 AM

Thank you Brad. I'm trying to get some second opinions about the Videx. I've also made an appointment with my Primary Care Doctor. He is not affiliated with the University Hospital. Actually he practices here in my small town.

I'm going to see if he would be willing to write the prescriptions for my meds and order the blood work every 3 months. As long as I'm doing well, I've come to the conclusion I don't really need to see a HIV specialist.

I understand what you mean about Canadian doctors. My Primary Doctor is Canadian. I liked him from the start, we see eye to eye about the state of health care in this country. He took his time to get to know me. I started with him when I changed insurance because the University ID clinic will not handle any health issues that is not HIV related. I liked his honesty. He told me I was his first HIV patient, but he would learn what he needed so he would be effective. When he put me on my cholesterol medicine I know he had spent time researching which would be best for me with the medications I was taking.

Of course, my next visit to the ID clinic they said it wouldn't do and prescribed me a new cholesterol medication...so much for them only dealing with HIV related issues.

I hadn't thought about the kick-back angle, but in thinking about all of this now...I wonder.

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