Author Topic: When to start on meds (Read 6624 times)

toplad · « **on:** April 23, 2007, 09:01:22 am »

Hi

Hope this is the correct forum to place this but I owuld like to sound out the general opinion on when it is best to go onto meds. Here in the UK it seems it is hospital/clinic/doctor specific.

I have been positive since August last year and have 3 sets of counts. My first lot were CD4: 330 Viral 3900, second lot CD4: 460 Viral 6800 and last lot CD4: 370 Viral 79000. The last set could be attributed to being diagnosed with secondary syphilis which has been treated and tested again. My doctor said that I should start thinking of the possibility of going onto meds should my viral load stay at 79000 or not decrease in the near future. He predicts my average CD4 to be between 300 and 500 but doesn't think it will go any higher.

I know everybody is different but my partner who has been positive for 7 years and is still not on medication has an avergade CD4 of 900 and viral load of 3800.

Any suggestions or thoughts would be most welcome.

Thanks

Miss Philicia · « **Reply #1 on:** April 23, 2007, 12:40:00 pm »

If you're viral load does indeed stay as high as your 3rd testing I'd personally go on meds. I guess if it went back around what the first two were you could entertain the thought of staying off meds, but everything else (cd4s) would need to stay consistent. With your partner and his numbers the situation is a bit more clear cut.

Let us know what your next set of numbers are and things will be more clear.

toplad · « **Reply #2 on:** April 23, 2007, 04:44:47 pm »

Thanks Philly. I will have both results on the 4th of May. one has to wait two weeks here to get a viral result.

Regards

newt · « **Reply #3 on:** April 23, 2007, 05:00:53 pm »

Hello mr, welcome

UK guidelines recommend starting treatment before your CD4 falls to 200, and give it due consideration when you CD4 is between 350 and 201. Viral load is neither here nor there (and yours ain't really high).

Personally, having waited to start 2 or 3 years ago until the bitter count of 185 (1st count under 200), I would today start between 350 and 300. The data from the big long-term studies shows people starting around here do better over the years, and is persuasive enough for me to retrospectively reconsider. Given there is a +/- 50 variance in CD4s you may be in the zone for starting now if you want, if you are ready & prepared. Another round of tests will help you decide. But if you want to wait, that is a valid choice.

A handy link for UK people is the i-Base guide to combination therapy, written by people on treatment for people on treatment.

- matt (brighton boy) the newt

toplad · « **Reply #4 on:** April 24, 2007, 05:38:34 am »

Cheers Matt - feedback and info is much appreciated. Will have a look at the link and wait for my next set of results.

Kind regards
Grant

toplad · « **Reply #5 on:** April 25, 2007, 10:54:51 am »

So got my CD results earlier than expected. Gone down from 370 to 350. Have to wait till next week for my viral load results.

Miss Philicia · « **Reply #6 on:** April 25, 2007, 01:08:15 pm »

Can you also provide us with the "CD4+ percentage (%)" from your lab work over the same time span you began up above in your first post. Also should be on the results you received today.

Thanks

toplad · « **Reply #7 on:** April 26, 2007, 08:58:38 am »

Hi Philly

Will only get this next week now. I have never before known or referred to my CD4 % nor has my consultant ever mentioned or referred to it. After reading so many posts on here I realize it is something i am going to need to educate myself on and from now on request.

As an aside, when I see my consultant or get my results, I never get a printout or anything like that - the trust that I go to seems to not do that. My consultant only tells me my CD4 and viral and some liver functions. I feel I want more info as information is knowlegde and power and enables me to manage expectatioons and keep an eye on my health but not sure exactly where the line is between self management and being too pushy for results. Stupid I know as it is my body! Is this something that occurs frequently in the doctor patient relationship?

thanks

Miss Philicia · « **Reply #8 on:** April 26, 2007, 12:03:38 pm »

Your lab results are YOURS. You pay for them, and it is totally acceptable for you to request copies of them each visit. I've NEVER had a doctor look at me weird when I've asked for them. If anything they appreciate an engaged patient as it shows you are highly motivated and generally that means you will not be prone to adherence issues (IMO). If your doctor makes unseemly noises and/or faces when you request copies I would advise locating another doctor. My only advice with your question about "self management/pushy" is probably when you veer to often into Hypochondriac Land... but there's a fine line with that too isn't there?

I would DEFINITELY track the cd4 %. I've never had an HIV specialist not reference this as much as the regular cd4 number, and over the span of 14 years I've had four HIV specialists. My current one even sees the % number as more important than the regular number, as the latter can fluctuate much easier.

keyite · « **Reply #9 on:** April 26, 2007, 01:03:33 pm »

Quote from: philly267 on April 26, 2007, 12:03:38 pm

Your lab results are YOURS. You pay for them, and it is totally acceptable for you to request copies of them each visit.

Suspect there's a slight US/UK difference here. In the UK it is not customary for patients to get paper copies of lab results. I'm guessing that is because it is felt these results should be interpreted by a doctor and explained to the patient in person (but if you insist I suppose they'll give you a copy).

Personally I just bring paper and pen when I see my consultant. On that I'd note down beforehand any questions I have so I don't forget to ask them during the consultation and I also note down the lab results that have come back. My consultant has responded very favourably to that approach.

Do ask about your CD4%.

toplad · « **Reply #10 on:** April 27, 2007, 05:08:04 am »

Thanks Keyite. Good advice re the paper and pen thing. I guess you are right about the difference between the UK and US. Will definitely remember to get my CD % result.

I just feel that my consultant is not proactive in any way. I go to the appointment, he gives me my results, asks me if I have any questions and thats about it. I feel as though I have to coax answers or a response from him. He is a very talented and well respected doctor but not as forthcoming as I would expect.

Have a good weekend!

keyite · « **Reply #11 on:** April 27, 2007, 09:52:05 am »

If you want to go one better, buy a cheap spiral-bound or hardback notebook. You can then use that to note down symptoms/concerns/questions/etc as they arise. Then it will be easy to put together the questions you want to ask when the next appointment is due. I also found this a good way to keep track of lab results over time. Not to mention a useful record of previous consultations.

Like Philly said, this really helps to portray yourself as organised and engaged in your own care, and doctors like that (just like everyone else appreciates those attributes in the people they deal with). I've noticed my consultant really makes a point of going over my list of written questions and she ensures they all get covered during the consultation.

Sorry to hear you're disappointed with your consultant. Perhaps try this approach? If it cuts no ice with him then don't forget you're entitled to change consultant and/or clinic. HIV is a serious condition and it is really important you feel you have the best possible working relationship with your consultant.

Good luck!

toplad · « **Reply #12 on:** April 28, 2007, 09:38:05 am »

Thanks for the advice Keyite. I had decided to see how my consultant approaches this next set of results to see if I would be comfortable staying with him. My partner has been with him for 7 years but then he is much healthier than what I currently am. Will definitily take a notebook with me a- that's a great idea. I get my viral load on Friday and then will make an appointment with my consultant based on that result. He is normally quite difficult to get an appointment with so that is another factor I need to take into consideration.

Hope you having a good weekend.

Thanks again.

Grant

toplad · « **Reply #13 on:** May 02, 2007, 08:31:19 am »

Hi

Got my results a little earlier than expected:

My Viral load has gone down from 79 000 to 21 900 which is good news and my CD4 is 350 (down from 370). My CD4 % is 28.1.

Would appreicate advice or feedback on these results, especially the CD4 %. Will be researching it myself but always good to hear what others think.

THANKS VERY MUCH
Grant

newt · « **Reply #14 on:** May 02, 2007, 09:58:48 am »

The CD4% is good

The CD4 count is stable. It is important to know CD4 counts can vary by +/-50, and are affected by many other factors eg time of day, eating, sleeping, colds etc.

The viral load is level. It is important to know viral load tests can show a measurement 3 time greater or smaller than the no. on the piece of paper. For a trend, eg viral load going up or down, you need 3 or 4 tests in a row.

(indeed, 3 times 6,800 (your 2nd viral load) is 20,400 and one third of 79,000 (your third) is 26,333, each about the same as your latest viral load of 21,900...)

- matt

toplad · « **Reply #15 on:** May 02, 2007, 12:00:34 pm »

Cheers Matt. Appreicate the feedback and info

Good news. I will be keeping an eye and have another test scheduled in about 3 weeks so will see what the counts are then.

Grant x

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Author Topic: When to start on meds (Read 6624 times)