Adventures in a Clinical Trial

General Blog
1

Hello to everyone! First, let me offer my support and encouragement to all of us living with this disease.

Some background:
I had a sore throat in September 2012. Took antibiotics to heal. In October, I had pain in my right foot. Went to my podiatrist, who diagnosed a stress fracture. I was prescribed a round of prednisone and wore a boot for 3 weeks, but pain continued. Left foot and both hands started hurting around this same time. Went to my PP, who ended up diagnosing P on my scalp, which had gone undiagnosed since I was 16. PP suspected PsA, so I got a referral to a Rheumy in January 2103.
Rheumy continued Pred, and added Diclofenac. That worked for about two weeks. Then added Methotrexate and Folic acid. To be honest, I have never felt that the Mtx has helped. I have also been using compression gloves for my hands, which has been moderately helpful.
A month ago, Rheumy suggested I try a clinical trial of Ixekizumab (Spirit P1). This Tuesday, I go to begin testing to see if I qualify.

I recently purchased Dr. Pagano’s book, and am working my way through it. I plan to make dietary adjustments based on his recommendations. I also plan to start aqua exercising to relieve pain and stress on joints.

This disease has been difficult to deal with, particularly because my hands and feet are affected most, and my career is completely based on my ability to use them (I am a Chef). My employees and customers are beginning to notice and answering questions has been challenging because I don’t want everyone to know about how much I am struggling. I am absolutely NOT willing to stop working or give up my career.

I have high hopes that I will have success with this trial, and that it will be ongoing, not temporary like so many of these biologic medications seem to be.

I’ll keep you posted.
Until then, I wish you all happy, healthy, pain-free days!

Chef Cindy

2

Good luck :slight_smile:

3

Tuesday, June 10

So, I got a call from the Rheumy saying that the initial testing appointment has to be moved to next week. They gave some song and dance about the sponsor’s paperwork not being in order. To say I am disappointed is putting it mildly. I am anxious to begin this trial.
On a positive note, not actively working this week has really made a difference in how I am feeling!

Best wishes to all!

4

Good luck Cindy hope this trial works wonders for you . I think you and everyone on this site could do with a bit of good luck for a change. I am also like you I refuse to give my job up and i refuse to let the Psa beat me I really struggle at work but am very stubborn also and to be honest I have always worked and don’t no any other way x

5

Oh Chef Cindy, I do hope things go well on the trial. Thank goodness the busiest time for work is behind you. Put those swollen feet up! (When I saw your profile pic, I winced: both my feet are badly affected, not in the toes but in the mid-foot.) Of course, I hope not, but there’s always the chance that you will take the medication and see no results. Have you and your rheumy thought about what your next move will be, in the case that you don’t get relief?
I will keep my fingers crossed for you!

6

Thank you all for the well wishes!
Seenie, Plan B is happening simultaneously in the form of diet and exercise changes. There is always the risk of getting the placebo also. Plan C?? I need to come up with Plan C!