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rubydoo1
Regular Member


Date Joined Jan 2008
Total Posts : 32
   Posted 2/5/2008 3:13 PM (GMT -7)   
I have never posted on here before but I need some advice or help making a decision. 
 Has anyone been involved in a FDA trial and what was it like ond should I join the study. I am considering one since Insurance will not pay for a more modern treatment since arth. has been eating on my spine along with severe DDD. Dr. wants to do a spinal fusion and Ins will not pay for anything but a fusion when there are so many other options out there now to allow a person to keep their mobility amd range of motion. Any advise would be appreciated.

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 2/5/2008 3:28 PM (GMT -7)   
I personally haven't been involved with clinical trials but I referred my sister for one for her depression and I seriously believe it saved her life. Only you can decide if the trial is right for you but if its a medicine that you can stop taking if you don't like it I would be more willing to go for that than say a new type of surgery that can't really be undone. I guess you just talk to your doctor and to the people running the trial then make the best decision you can.
Good luck.

rubydoo1
Regular Member


Date Joined Jan 2008
Total Posts : 32
   Posted 2/5/2008 5:25 PM (GMT -7)   
Thanks sjkly,
I know what toy mean by can't be undone,that is what's holding me back. Glad to hear it helped your sister and hope you are doing well.
Again-Thanks

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 2/25/2008 11:48 AM (GMT -7)   
I am currently participating in a clinical trial for the drug that will be marketed as Cimzia.  I am taking it primarily for Crohn's Disease but, since it is used for RA also, hoped that it would help with my arthritis (Crohn's related arthritis).  I have been on the trial for right at a year.  The trial lasted for 6 months and then I had the option to sign on for the long-term phase of the trial, which will last until the drug is available on the market (or rejected by the FDA- whichever happens).  I had some concern about taking a drug that had potentially unknown side effects but, since it is so similar to Humira, figured that most of the side effects would be the same as with Humira.  The drug helped tremendously until winter came and, since then, my arthritis has been killing me.  The only drawback to the trial is that they really limit what other drugs I can start taking (stuff I was already on is okay), as those could interfere with their results.  For instance, I can take arthritis medications, as long as they don't also help with Crohn's (which a lot of them can).  I am limited on how much steroids I can take, which has limited my ability to get cortisone injections.  But, other than that, I have no complaints with doing a clinical trial.  I get free medication, get paid for doing it, get to see a doctor and have blood work done every month, etc.  As long as it is in the late stages, so they are more aware of the side effects, I would say go for it...I would rather take a drug that could potentially shorten my life span (assuming that early death ended up being some horrible side effect) and have a better, less painful life, than live longer but be miserable the entire time. 
...rejoice in our sufferings, because we know that suffering produces perseverence; perseverence, character; and character, hope.   Romans 5:3-4


rubydoo1
Regular Member


Date Joined Jan 2008
Total Posts : 32
   Posted 2/26/2008 3:50 PM (GMT -7)   

Hello ZenaWP,

I am glad to hear that the trial med you are on is helping. I was going for a trial to get a new apparatas put in my back,a person I know had it put in and said it was a miracle as far as he was concerned. I went for my evaluation for the Stabilimax trial and they denied me. I asked why and they said my back was too bad,multiple problems. It is strange though,the person I know has cancer(Lymphoma) and doesn't have long to live. I am glad for him though. He was denied at the same doctors office but when Stabilimax got the denial letter they told the Dr. to go ahead and do it.

Now I am on for another trial. I would say it will be the same,denial. My back is too bad I guess. I do have my hopes up though,I do not want multiple fusions. Be like a board if you add in the both hip replacements.

 

 


Raven67
Regular Member


Date Joined Sep 2007
Total Posts : 155
   Posted 2/26/2008 8:33 PM (GMT -7)   

Hi,

I was on a study for Breast Cancer and the only advice I could give is to make sure you read everything you can.  The medication I was on removed any excess of estrogen that I may have been producing, even after a complete hysterectomy.  Not sure I can name the medication so I left it out.

I have been off of the study for about 3 months, my Oncologist feels that the med I was taking on the study may have caused the Rheumatoid Arthritis.  i did a lot of research before hand but the problem was RA was not listed as a possible side effect when you research the med but when you research RA one of the causes is a dramatic change in hormone levels.  I probably would have chosen to go one the study anyway because I have an 85% chance of having Breast CA return.    The care you receive on a study is excellent as well.

Do a lot of research and then you can make an informed decision.

Best of luck and keep posting to let us know how it goes.

Raven :-)


When you get to the end of your rope, tie a knot and hang on!!!!
 
Current Diagnosis-Rheumatoid Arthritis, Insulin Dependent Diabetes, Osteoarthritis right knee, Osteoporosis. Stress!!!!!!
Current Meds-Methotrexate 20mg s/c weekly, Plaquenil 200 mg BID, Celebrex, Folic Acid daily, Cesamet, Oxycontin 20 mg BID, Lorazepam 2 mg dly Actonel weekly, Insulin-Humalog 35 units TID and Lantus 40 units BID, Calcium, Vitamin D

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