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Wil's
CTLA4-ig Trial Journal
Wil's CTLA4-ig Trial Journal
January 3, 2003
Hello to all the Arthritis Insight lovers,
I wish you all a healthy and happy new year 2003.
This is my last contribution for my CTLA4-Ig journal.
I am pleased because you are highly interested in my health and in the success of the CTLA4-Ig study.
I can tell you that the study is a great success. The success is so exceptional that it was a moral duty to stop the placebo's and to give all the patients the real stuff. But, I am the only one who must stop the study because in May, after a persistent bronchitis, I developed suddenly a pneumonia with water in my left lung ! ! ! My RD put me immediately in the hospital. The first time in my life ! ! ! (60 yrs) Three weeks long ! ! ! A panic broke out. !!! I thought I had lung cancer, tbc ... you know, in such misery you think always you have the worst disease on earth! My RD stopped all the medication for my RA. No MTX, no infusion with CTLA4, no nsaids, no painkillers! The most intensive blood and chest examination began. A zillion blood samples, a lung puncture because they want a culture of the fluid, lung photo's, several types of lung scans, a bronchoscopy, a pleuroscopy with a drainage to eliminate the excess lung water. You name it, they have done it! Finally they could not find malignancy or tbc. I took simultaneous three different antibiotics during two months and I had no more fever. But after two months without RA medication I could hardly stand on my foot and coming out of bed was a disaster.
Thank God, my wife was so helpful al the time. At that time, my lung X-rays ware not good. We could not see my left lung, it was white like milk and that means that there is to much water around my left lung. After consulting the lung specialist my RD decided to begin a cure with Medrol (=methylprednisolonum), 16 mg per day during a week and than decrease very slowly. The day after the medrol start I could RUN, DANCE, JUMP...oh my God that's a miracle ! ! ! The first cortisone in my life! Although the best thing after a week was when I saw my new lung X-rays. They where normal for more than 95 % ! ! ! Thank God! ! !
Back on my weekly 15 mg MTX injection, 1 mg acid folic, and now after 5 months cortisone I am on 4 mg medrol per day. Both, my home doc and my RD, they say that when my RA is under control with 4 mg medrol it is better to stay on it because it is safer then the new generation drugs like embrel, remicade etc...and when I ask about the joint-erosion he said that he has done several study's and they show that medrol also decrease or stop the erosion.
The worst time of my live is over ! ! ! No more smoking a little cigar ! ! ! Eating sweets all the time and thicken 10 kg. After all, I am doing fine.
I wish you all the best, pain free days and take care.
Love and greetings from Belgium.
Wil November 26, 2001 June 14, 2001 Hello
to all the Arthritis Insight members, Sorry
because I have not updated my Journal last months. I was very busy. My
home doc passed away (leukemia)
so I was looking for another good doc, obtaining all my medical files
for the new doc, repairing and set-up many computers for family and
friends, making a new home page for my brother and last but not least
all the family stuff. Also being a good grandpa for Bjarne, our first
grandson (19 months) and waiting for a second grandchild on 9th
July. And what about the Phase 2 trial? Today
I have had my 6th infusion and all went well. My RA is very
good under control. No more pain and flares. My RD is excited because
most of his patients are doing very well on this new drug. Because I
have severe Hallux Valgus, he wrote a prescription for a pair of hand
made shoes and they are fabulous! I can walk again without pain for only
30$. But like always, problems are looking around the corner. After the
4th infusion I developed a little rash on my back. Little red
spots, not severe but?it?s scaring me!&nbsP;
The doc took a biopsy and sends it to the lab. After a week they
invited me at the department of dermatology. Chronic eczema! Oh boy,
another disease on my list I thought. After a while the supervisor came
in and he took a look at my back. That?s not eczema he said. Although
he was not sure ?after that they took a couple photos of my back and
he said, we will discuss your case at our weekly reunion with the other
dermatologists and the professor. We will give you a call to come in
when it is done. After three weeks no call from dermatology. I called
myself and asked for the results of the discussion. And guess what she
said to me. We cannot organize a reunion because you are the only
patient. Can you imagine that, I am not worth to discuss my illness !!!
Today, after one month, while I was receiving the infusion, the
dermatologist called my wife to say that they will talk about my case
tomorrow and after that she will give me a call to come in for a
consultation. I am mad about all this! I am a case! Not a patient!!! I
asked my RA professor to call the dermatologist to receive the
conclusions and he will do that. Oh boy I am mad. I don?t go to the
dermo consultation!!! And when I encounter one of those docs I skip into
a toilet!!! LOL. After
all, I am doing fine. I
wish you all the best, pain free days and months and take care. Greetings
from Belgium. Wil Who
is waving from over the Atlantic Ocean. &nbsP; March 15, 2001 Hello to all the Arthritis Insight
fans. On March 15th I have had my third It is very difficult to evaluate the
effect of this new medicine! When I My next update will be at April 12.
Take care all of you. I hope you have March 5, 2001 Hello girls and boys from Arthritis Insight,
Who is waving from over the Atlantic Ocean.
Hello to the journal readers,
The best way to update my CTLA4-journal is to translate the report my RD
wrote and send to my home doc. Although, it is not easy translating such
matter, but here we go.
Dear colleague,
I saw your patient, Michiels Gaetan, at the day hospital rheumatology on
July 17 2001, August 21 2001, September 18 2001, and October 16 2001.
Medical history:
1976: diagnosis of Cutaneous Lupus Discoid (ANF negative) without
permanent character.
1982: RA+ with important destructive erosion at the left shoulder joint.
Asthma bronchially and hypersensitive at house mite.
Peptic ulcer because of NSAID
Current situation:
During 8 months we observe patient in a double blind placebo controlled
comparative research protocol in which monthly CTLA4-ig was given. Other
medication is: MTX 15 mg I.M./week, Acid Folic 1 mg/day, Feldene 20
mg/day and Losec 20 mg/day.
The tolerance in this protocol is excellent. Patient is also noticeable
improved concerning the synovitis activity, subjective as well as
clinical.
Of course we still note the known damage of the experienced arthritis.
There was a period of more cervical pain, caused by the known
subluxation at the C1-C2 level. A CT-scan did not show compression on
the spinal cord. We prescribed a neck collar for temporally use to
support C1-C2. He has also some unexplained little rash on his back but
it is certainly not in evolution or worsening. Given the excellent
evolution of the Rheumatoid Arthritis in this protocol the medication
will be continued unchanged as described above, inclusive the monthly
infusions.
With fraternal esteem
Prof. Dr.R.Westhovens
Meanwhile I have had my November infusion and I am doing really well
except for my neck, so I wear my neck collar to decrease the pain. More
than likely the trial will continue for another year.
A happy and healthy new year to all the journal readers and take care.
Wil
Ardent and passionate waving from Belgium.
infusion with CTLA4-ig. It was an easy one (?), just like the other two
infusions in the past. Except one thing, the nurse was a new one, very
young
(no objects for that), just from school I guess (no objects), beautiful
(I
like it), and very nice (I . right, you now what I mean) but she could
not
insert a catheter into my veins. The first trial the needle was insert
to
deep and go in and out my vein. Oh sorry she said, was it painful? No no
I
said, I just feel nothing! (LOL) The second trial she inserted the
needle
beside my vein! Sorry, she said, I am afraid the needle is not into your
vein, I hope you don't have to much pain? No no I reply, you do it very
well
and without pain! (My veins are not IN my body but OUTSIDE, you can see
them at a distance of 10 meters if you are not blind!) Then she called
another
nurse who took her hand and together they inserted the catheter on the
correct place into my vein. My RD came in. How are you Michiels? I am
fine.
No pain? Almost no pain! He knocked end pushed on my hands, knees and
foots and then he said, you are doing very well. He asked me to take
part in an additional research to determine the concentration of the
CTL4-ig in the
bloodstream after 1,2,3 and 4 weeks. So they can adjust the dosage of
CTLA4-ig to become optimal. What could I say? He is a nice doctor! I
agreed!
From now on the infusion is every month, but I must go to the hospital
every
week to take a blood sample!!!
began this trial I was not in a flare and I was doing relatively fine.
After
3 infusions I feel the same way. Not better, but also not worse! Maybe
without CTLA4-ig I have had a big flare during that time? Who knows? So,
we
are going on.
pain free days.
Wil
Waving from Belgium.
I am in a phase II trial with a very new medicine named BMS-188667 or CTLA4-ig (the name of the active protein in it). Samantha Whitfield from Australia is part of the same trial. During a full hour my RD explained how CTLA4-ig is working in the human body, making a nice scheme of this theory. I took it with me at home. Homework !!! While Remicade and Enbrel bound itself with TNF-alpha to eliminate TNF-alpha and stop the inflammation, the intervention of CTLA4-ig is a step earlier in the inflammation process. CTLA4-ig prevents the production of TNF-alpha.
On February 15th I have had my first infusion with BMS-188667. On March 1st
I have had my second infusion. All went very well. My RD and the nurse were
very nice. We received coffee, sandwiches and a gratuity ticket for the parking of the hospital. Nice!
The infusion itself is not a big deal, no pain, and no side effects in the short time. It was very easy. The time for one infusion is about 30 to 45 minutes, but we must stay
in the hospital for about 2 hrs to control the temperature, the heartbeat and the blood pressure every 15 minutes. My RD said you could feel the effects after 3 infusions IF you have not the placebo ! ! ! . And indeed, there was a woman who said she never feels so good the last 8 years. She was extremely content. So there is hope ! ! ! At this moment I can't feel any difference. But lets wait and see...After the third infusion there is 1 month between the other infusions and it is a one-year double blind trial.
Update finished
Take care all of you and ...I wish you pain free days.
Greetings from
Wil
Who is waving from Belgium.