It's a five page description of one person's experiences during trials in 2007, for the Qutenza patches and doesn't make easy reading if you're considering starting the treatment yourself.
(For a balanced view see the other three posts about capsaicin and Qutenza in the list to the right of the blog)
Because it's much too long for one daily post, only page two is shown here but because it's by no means heavy going, the other four pages (via the link) are definitely worth reading.
Study of NGX-4010 for HIV related neuropathy (Ray's story)
Page 2 of 5 Click here for link to full article
J.R.E.:
Update 2/12/07
Donna, from clinical research called me early today, to ask me if I was keeping up with my diary. I told her yes.
She then told me she would colllect that information from me this Wednesday, and that the patches would be put on, in the doctors office 8:00 Thursday morning.
She called back later in the day, after conferring, with her staff, decided I do not have enough days completed in the diary to start with the patches. A few more days are needed to evaluate my pain measurement.
So, it looks as though, sometime next week, for the patches on the feet.
Ray
J.R.E.:
Update 2/20/07
Donna, from clinical research called today and I gave her the necessary info,from the diary I've been keeping these past 15 days.
My appointment is set up this Thursday the 22nd, at 8:00 Pm. I was told to expect staying at the doctors office no later then 5 hours and no less then three. I keep having these illusions of hobbling out of the doctors office with big ole clowns feet, after the patches a re placed on. :P ;) Ed will be driving me, just in case.
I hope it's not too uncomfortable though, I still have to go into work Thursday night. I wasn't planning on taking the night off.
The only prep I have to do, is to shave my feet !! :o I am not too neanderthal down there !! :D ...
Now, if I had to shave my chest, that would be a different story !! I will probably update this Thursday evening, before I go to work.... depending on how tired I am.
Ray
J.R.E.:
Update 2/22/07
Had a very difficult day today at the doctors office.Spent 4 1/2 hours there. I will post more tomorrow. Had the patches placed on both feet today, and I got to tell you all, It was probably one of the most painful things I have experienced, since my severe epsisode of shingles, back in 1989.( I am not really complaining though--but, it was much more intense then I imagined it would be. Since 10:30 this morning, I have taken 3 Oxycodone. The pain from these patches has been incredible. Right now it's not to bad. I do have to go into work at 11:00 tonight, should be able to pull through the night. the Patches were applied for 60 minutes. I don't know which strength patch they used.
Later------Ray
J.R.E.:
Update Friday 2/23/07,
Its been a pretty tough past 24 hours !!
I will summarize the events of the past 24 hours:
After a month or so, of talking about this trial on the Capsaicin patch. I went to the doctors office yesterday at 8:00am to meet with the doctor, and Donna, from West Central Florida, Clinical Research.
At 8:00 am I made myself very comfortable in a reclining chair in one of the rooms at the doctors office.
Donna came in first, ( I removed my shoes and socks, and Donna proceded to wash my feet.) I told her they were not not really that dirty, as I wash them once a week whether they need it or not :D. So we started off with a chuckle...
After My feet were washed, my doctor came in to examine them to make sure there were no open sores, and to just give them a visual inspection. Tuning fork was used again.
At that point, Donna came back into the room, and applied a numbing agent to cover both feet. Included tops, bottoms toes, between the toes, right up to the ankles.
This numbing agent stayed on for ( I believe ) about 30 minutes. During this time, my temp and blood pressure was taken. Also had two more vials of blood taken. These will be used( Iwas told) for viral load and t-cell count.
We had discussed the results of the ECG, and the blood tests ( for this study) from February 5th. There was no viral load or t-cell count taken on Feb 5th. It was the basic round of blood test. Those test came back excellant. They had mentioned to me how pleased the were at those results. Everything was within range. I , of course viewed the test results, just to verify what they were telling me !! The ECG was also very good, no problems were indicated, and everything appears very normal.
The numbing agent was removed, and the feet were washed one more time. At this time My doctor came back in to the room, and started drawing lines on my feet with markers, so that the capsaicin patches could be properly cut to shape, to cover the entire foot.
The patches themselves, were about 6 inches by 8 inches. With the NGX 4010 study numbers imprinted on them. I had no idea which patch I was going to receieve. The high potency one, or the half potency one. It was determined at this time, when the patch kit was open, that I would receive the 60 minute patch. The patches come with a backing that is pealed off.
After the patches were cut to shape, they were then placed on my feet. Left foot first. Took about 3-5 minutes for the patches to be placed on each foot. They also do not adhere to well to the skin, so gauze was gently wrapped around the patches, making sure of full contact with the foot. The entire foot, from ankles doen were covered.
THEN THE FUN BEGAN !!
Approx 10 minutes into having the patches on, I felt the heat being generated in my feet. The were continually monitoring my blood pressure during this time. and asking me my level of pain.
30 minutes into the patches, I looked over at Ed, and said "This is really getting to be quite painful. I let the doctor know, how much pain was occurring. On a scale of 1 to 10( ten , being the worst) I was ranking it about an 8...... Now, I usually take pain pretty well !! But I was beginning to wonder at this point. :o
About 35 minutes into the patch, I didn't think I could take much more. The doctor then gave me some Oxycodone. The pill started working in about 10 minutes, but was not really helping very much.
About 45 minutes into the patch, I was now rating the pain at a full 10
55 minutes into the patches, I asked for another pill. They asked me if I wanted to stop the study, I said no... lets keep going, there's only 5 minutes left ( a very long five minutes)
My blood pressure at this point was now 172 over 101. I never have high blood pressure, and my blood pressure has always been fine these past three years and 4 months on meds. So, I was quite surprised to see it go that high.
After 60 minutes. the patches were removed. The pain pills were somwhat effective, but not all that much. The feet were very sensitive. They were twitching. The slightest air movement on them, felt like fishing hooks going into my feet. The feet were extremmely red in color. They did not swell up, or blister although they sure as hell felt like it. The tops of the feet, and the toes, were the most painful. The bottoms of my feet, which I have most of the pain in, felt pretty good.
Shortly after the patches were removed, the feet were again washed. By this time, the pain pills had kicked in, but it still required a lot gentleness in touching the feet. There were several more blood pressure tests done, and the blood pressure started coming back down to normal again.
I stayed another hour in the office for obsevation after the patches were removed. By the time, we were able to leave, the pain medication certainly did it's job. The time now was 12:30 Pm. I was able to put on socks ( that were given to me at the doctors office) And I was able to get my feet back into my sandals with no problems at all. I was able to walk with very little problem, back to the car. We then left the office and started home.
About 2:00 pm the pain level went back up to 10 !! I had only taken at this point, the two pills that were given to me at the doctors office.
I started filling the bathtub up with water.Cooling water seemed the only option at this point.The pain was getting excrutiating, I had to do something. The water had to be just the right temperature-- too cold was too painful, and too warm was too painful. The minute I place my feet into the the water, the pain immediately subsided, and it felt good. After removing the feet from the water, the pain started almost instantly. I was tired and wanted to sleep, right there at the bathtub, with my feet soaking.
At that point. I couldn't take it anymore, so I took another pain pill. I also took some Vaselline intensive care lotion, and covered my feet with the lotion. ( This seemed to help a lot, and was soothing)
That pain pill then kicked in, and I was able to sleep from about 3:00 pm until, about 8:00 pm. I had a good sound sleep.
THEN I HAD TO GO TO WORK
I woke up and felt pretty good. took a shower, there was still some tenderness, when the water would hit the feet., But overall not to bad. I was debating calling into work sick, but I thought I would tough it out. The feet wwere back to normal color.
By the time I got to work ( around 10:15pm ) the pain was back up at around the 9 level. I was barely able to walk. But I covered it up pretty well, where no one really noticed.
I punched in at 11:00 pm got behind the desk, the first thing I had to do was remove my shoes. The pain was still very intense.
After the shoes were removed, the pain levels went down considerably, and also quite rapidly, and I was able to get through the rest of the night, with very little problem I had gotten by at this point with just the 3 initial pain pills.
I refilled the pain prescription at the pharmacy on the way home from work this morning. But have not used any of those, and I still have one remaining from what the doctor gave me.
Any pain pills taken have to kept in the dairy that I have. The time, and the level of pain, are monitored.
I was given another dairy to maintain until my first follow up visit on 3/22/07.
Clinical research also will call me periodically, to see how things are going. I will get the first call from them, This coming Monday morning.
As I sit here at the computer, things are going pretty well. We had just come back from going out to dinner. I had to kick the shoes off in the car, to be comfortable, but overall not too bad.
I think I would put my pain rating ( at this moment) at about a 5. If it stays about like this, I shouldn't have to take anymore pain pills. I don't like taking them anyways. The 3 I took yesterday, came pretty close to making me heave up. But I ended up OK.
Thats it for now------Ray
J.R.E.:
Update 3/5/07
I guess it's been 11 days, since I started the trial/study, with the capsaicin patches. A
brief follow up...
My feet are doing pretty well. I am at least able to stand on them now, for more then an hour with no excessive amount of pain !! I have no difficulty walking. And I haven't had any need to take the pain medication.
I would say that overall ( at this point) I am about At the same level of pain or discomfort, that I was at, prior to the patches being placed on the feet on 2/22/07
My next follow up visit will be March 22nd...
Ray
http://forums.poz.com/index.php?topic=8243.0;wap2
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