About a year ago last September I saw an ad in the newspaper for a study for people with Rheumatoid Arthritis – that would be me. I saw the study doc and he decided I fit into it, so I began with their capsules made from hops. After a bit he decided he wanted me to go on their medical food – it is 2 scoops of a powder in 8 ozs. of water whizzed in a blender with fruit. I started adding some liquid Vit D and liquid Calcium to it as well as a bit of yogurt. It was my breakfast every morning and it made it easy because I always knew what I was going to have/ There were several flavors – they were okay, not repulsive but not something I would recommend. Then I was to do a second shake in mid afternoon, mostly just the powder and water. Later, just before my birthday he decided to check to see if I had any gluten problem – the test showed I was gluten sensitive. So I started on a gluten free diet along with the capsules and powder.
Another part was to write a pain diary every day – no real instructions so I had to wing it. I used a spiral bound notebook that was 8 x 51/2, it’s a handy size and comfortable to write things in. I decided to find some clip art figures, side, front and back views; it was only a few months ago I realized my computer could flip the side view so I then had left and right sides. I used double sided tape, then later a glue stick to paste each figure down. Since the figures were fairly nude, I was able to draw on the place that was hurting – often it was the same thing many days in a row. Now what I wrote wasn’t technical or scientific, it was simply what I felt, what I was doing and what was happening. I made comments and sometimes my frustrations were quite obvious in the terms I used. The first time I showed it to him, he was a little surprised – not sure what he was expecting. I continued to write – there was one period of time early this year when I wasn’t able to write at all because of the pain and problems with my neck and shoulder. By the time I was finished, I had 2 complete notebooks filled and bulging from the pasted figures. When I gave them to him on my last visit, he was quite surprised. Whether it has scientific value is questionable, but it may be entertaining for him to read.
There was no one else on the study who had had it for 40 years as I have, there were different lengths and probably gave him a good selection to study. I would go to see him every 4 to 6 weeks after I was established on the capsules and powder. One frustrating thing was the set of questions to answer every time I went in – my answers really didn’t ft the questions. If I were doing it from a patient point of view, it would look a lot different – but no one asked my opinion, probably just as well. They said it would take about 15 minutes to fill then out – took me half an hour. I had to go to the research center early so I could do the forms before seeing the doc – that last few times they gave them to me to fill out before I came the next time. Still a pain to fill out but I didn’t have to go so early.
He would occasionally do blood tests and at one point decided I needed fish oil. So I was given a bottle of their fish oil to take every day. One day I mentioned I was having a hard time finding something gluten free when I was out somewhere, I didn’t really want a big lunch, just something to help the hungries. So he gave me some gluten free bars I can carry n my purse that fill me up while I am out and I don’t get a headache because I didn’t have anything to eat. Often I would leave the center with one or two large bags of products that must have cost at least $250. All I had to pay for was my gas and the toll on the bridge. I don’t know how much the whole thing cost, I’m just glad it wasn’t on my nickel.
I’m sure he found me a bit frustrating at times – the week after I started the study I fell and really hurt my knee. Later I had some difficulty with the coated product and I think there was something else. So my study wasn’t all that smooth. I did lose 13 pounds but then gained back 2 – not bad, I would rather lose than gain. For a while I wasn’t having hot flashes any more, when I went off the powder and capsules, I now have them again but rather mild. There was no dramatic change, but I am moving a whole lot better than I was a year ago. He decided to have me go off everything and see what kind of a difference there was – not much of anything. So last Friday was my last visit for this particular project. He did say he would contact me if something else came up that he thinks I would be a candidate for, so maybe it isn’t a complete washout after all.
I will miss seeing all of them at the center, everyone was friendly and fun to be with – though Dr. Bob took a while to loosen up and relax a bit. So it is all over, it was kind of fun, interesting and if in any way I was of help for the study, that is great. I am glad I did and look forward to seeing what happens in the future.