http://irp.nih.gov/nih-clinical-center/clinical-trials/get-involved-with-clinical-research
Not being able to ride in a car would disqualify me off the bat, but curious to know if anyone else has had this experience.
Got accepted but I was rejected after my pharmacist alerted me to the drug's dangers and I sent my findings to the research doctor. I should havebeen excluded. The drug they are testing was stopped in a Stage 2 trial for R.A..
You were very fortunate to have such a good pharmacist, Mareen! They play such a key role in our health, and many times we do not refer to them often enough!
My husband has a problem retaining potassium in his body, sometimes he has to take large doses of the liquid.
I did the clinical trial for gabetin I was allergic and had to stop it. I have a friend in a trial now for lupus shes in the 3rd stage now and knows she is getting the med instead of the plecbo and swears she never felt better.
Hi all! Yes, I have done a few clinical trials with my physicians at Johns Hopkins. One was for eye drops for dry eye, was a 6 week study and I had no problems at all. Only issue was the weekly 2.5 hour drive to Hopkins ! The next was an international study to collect data for Sjogrens, so actually wasn't a study as much as a "fact finding mission". Next week I am doing a 3 hour clinical study for the effect of reading on tear production, it's an easy one. I have never received any compensation with the exception of a lunch voucher and free parking.
I was hesitant to do the eye drop one, but trusted my ophthalmologist. I would be very leery of the ones you see on TV or newspaper ads. I think it's the nurse in me that feels if you have an opportunity to help by doing this, go for it. My family disagrees with my opinion on this , but I feel it's up to the individual to decide what they feel is best for them. No right or wrong answers regarding taking part. The reactions I read here are scary, so sorry it happened!
Kaz, my husband also has unexplained high blood pressure at times, but it has no rhyme or reason to it. He can go through extreme stress and no spike in blood pressure, it can be almost normal. Then there are times everything is laid back and calm and his blood pressure is frighteningly high, SO I wonder if this could actually be a warning bell that the body needs potassium?
Does this make sense?
Kaz said:
I have trouble too, so have to be careful. I am always just below bottom values or borderline. So cannot take diuretics.
Hi babs,
It's always so great to have a few nurses and/or med students in the group! I love it!
So how do you like the Autoimmune Clinic at Hopkins? I have been there in the Genesis, in search of a Surgeon to 'fix me', though that did not take place. When I was there, we had no inkling of autoimmune, as a car accident that I could never get over took me 'down the road'. I believe that accident to have been the catalyst.
Glad you're with us, babs!
Wishing you well,
SK
I am also doing the clinical trial for reading for Sjogren's.
I just didn't like not being told the whole truth and nothing but the truth in the clinical trial for Baminercept in Sjögren’s Syndrome which is sponsored by the National Institutes of Health. If you are going to participate in this trial, ask a lot of questions about side effects...including death and cancer and elevated liver enzymes.
SK said:
You were very fortunate to have such a good pharmacist, Mareen! They play such a key role in our health, and many times we do not refer to them often enough!
I went to Flaum Eye Institute at the University of Rochester in Rochester, NY.
SK said:
Hi babs,
It's always so great to have a few nurses and/or med students in the group! I love it!
So how do you like the Autoimmune Clinic at Hopkins? I have been there in the Genesis, in search of a Surgeon to 'fix me', though that did not take place. When I was there, we had no inkling of autoimmune, as a car accident that I could never get over took me 'down the road'. I believe that accident to have been the catalyst.
Glad you're with us, babs!
Wishing you well,
SK
Maureen,
This is obviously a different trial since the one I go to next week does not contain any drug involvement as you mentioned. It's just the standard dilating and staining eye drops that have been used forever so I have no concerns !
Maureen said:
I am also doing the clinical trial for reading for Sjogren's.
I just didn't like not being told the whole truth and nothing but the truth in the clinical trial for Baminercept in Sjögren’s Syndrome which is sponsored by the National Institutes of Health. If you are going to participate in this trial, ask a lot of questions about side effects...including death and cancer and elevated liver enzymes.
SK said:You were very fortunate to have such a good pharmacist, Mareen! They play such a key role in our health, and many times we do not refer to them often enough!
HI Kaz,
I understand how people can be hesitant regarding drug trials, as I said my family wasn't happy with me. I never go "looking" for a trial , however if approached by one of my own physicians I consider it after my research and talking with them. So far so good. And as they tell me every time, the study will not help me, but possibly others in the long run. I had to go on disability last year and I miss helping others more than I ever thought I would. I can't even donate blood anymore, so doing this makes me feel good! I know it may sound strange but saying yes to trials or studies lets me envision that I am doing a little bit to help someone else. ;0)
Kaz said:
Yes Babs it is a personal choice with drug trials and I take my hat off to those who participate as if it wasn't for them (like yourself), no new drugs would be making it onto the market. Just personally because of my history with allergies and sensitivies etc., and what I know about trials I personally am hesitant. But that does not mean others should not participate as a lot of good can come from drug trials :-)
Who did you see at John Hopkins? I haven't been real thrilled with my doctor there.
babs53 said:
Hi all! Yes, I have done a few clinical trials with my physicians at Johns Hopkins. One was for eye drops for dry eye, was a 6 week study and I had no problems at all. Only issue was the weekly 2.5 hour drive to Hopkins ! The next was an international study to collect data for Sjogrens, so actually wasn't a study as much as a "fact finding mission". Next week I am doing a 3 hour clinical study for the effect of reading on tear production, it's an easy one. I have never received any compensation with the exception of a lunch voucher and free parking.
I was hesitant to do the eye drop one, but trusted my ophthalmologist. I would be very leery of the ones you see on TV or newspaper ads. I think it's the nurse in me that feels if you have an opportunity to help by doing this, go for it. My family disagrees with my opinion on this , but I feel it's up to the individual to decide what they feel is best for them. No right or wrong answers regarding taking part. The reactions I read here are scary, so sorry it happened!