mon histoire - mes traitements
"I always told myself that if one day one found out that my children and grandchildren had a birdshot, I would not tolerate them telling me that I knew and that I did not do anything!" -
MY STORYMY TREATMENTS -
My name is Sylvain MIGNON, I am 50 years old and I am currently treated for a Birdshot retinochoroiditis.
The following narrative will help you better understand why I created this association, and the motivations that animate me. These are just my thoughts and my way of seeing and feeling things, so it's not the general feelings that 'birdshotters' can feel.
People who are told that they are seriously ill are naturally shocked! The latter is even greater than it is said that there is no cure and that the outcome can be dramatic, or not!
Also, if you read these lines, it is because, just like me, when you heard the news, once you got home, you plunged into the internet to learn more, and you fell well. Which was not my case at the time because nothing existed!
On this site you will learn to better know the disease, the medicines, the places where to take care. You will also be able to join us on the Facebook page of Horus birdshot, and to chat with other patients is reassuring! Good reading…. Feel free to contact me for any further information.
When we learn it we are of course lost for the most part, so I will tell you my story so that this experience can help you and so can improve your "vision" of things ...
February 2008: I have some problems with my vision, which is unusual for me that we usually call "lynx eye!" An impression of having things that happen before my eyes, as well as flies that I am going to see my doctor treating Dr. LINGAT at the place where I live (near Reims) and I make an appointment with an ophthalmologist whose name I will not mention, by Christian charity! said that everything is fine and that it is probably related to the stress of work, blah blah ... ok no worries, full of confidence, we leave my wife and myself to make a trip to South Africa for ten days When I come back from the latter, I feel that it really does not go well and I go back to see my doctor and he tells me to go and see the ophthalmologist to find out a little more, but again this ophthalmic ( I will not mention the name!) does not detect anything special, the summer is happening and things are getting worse. see Dr. LINGAT. The latter told me that we must have the heart net, so phone he in the service of Professor DUCASSE at Robert Debré hospital in Reims. I have a meeting soon after which the Pr decides to give me a whole battery of tests to assess the extent of the problem.
Tests finally passed from 2008 to early December. The PR DUCASSE tells me that it is possible that it is the Birdshot disease, which is excessively rare, and especially very little known. It remains to do the ultimate test, the HLA a29 genetic test. What is achieved a few days later, indeed 95% of birdshot have this feature.
December 24, 2008, the chopper falls: Birdshot ...
Merry Christmas Felix!
January 2009: Meeting with PR Aerndt at the Robert Debré hospital in Reims for the first corticosteroid injections periocularly, which is particularly impressive and stressful (you are anesthetized with drops and eyes are removed with forceps and the injection is done with a needle of 5 cm curved, the goal being to circumvent the eye to inject behind! very very stressful!
February 2009: Dr Aernt de Reims tells me that he is impotent with regard to treatments, and via the internet I manage to contact JM Ferrieux, who is himself suffering from the disease and Dr at Copenhage. He gives me the address of Dr. Nathalie Cassoux at the Salpetriere which is specialized in the field.
May 2009: I spend a battery of tests at the Salpetrière to better know the damage of the disease (Angiography 2 types, ERG, CV, OCT ...) the total. Then, go with DR Cassoux: Help, it is urgent to intervene, it is the hospitalization is scheduled a few days later, early June (the day before my birthday!).
June 2009: I am hospitalized 3 days at the Salpetrière to receive a bolus of corticosteroid (ie 3 flashes of Solumedrole 500 mg) this is done in 3 to 6 hours per day and by infusion. This is what they call "a coffee maker". Indeed it is cortisone very high dose with the undesirable effects of it, what I call an atomic bomb in the body (increased pulse, increased tension, redness ...). I leave the hospital on Thursday. On Friday morning I take my Prednisone that we decided to dose at 1mj / d, 90mg for me. Barely 2 seconds after taking this medicine, I had an upset stomach to bend myself in two on the floor (I am not a snug one, and I never received a rifle bullet in the belly, but I am convinced that this is what we must feel !!!).
I call for help my wife who is upstairs and I decide to go to the emergency room directly, we are 10 minutes later. I actually have acute gastritis with risk of esophageal lesions. I am given a drip and I finally recover. From there we add an inipomp (medicine to "calm the stomach") and everything goes back normally with ups and downs, an intense tiredness, a depression, a loss of muscle, a rise of tension (one adds still some drugs against that!) redness on the skin, significant tremors. But hey, if this is the only solution, no worries, I'm ready to put the price ... it's still very hard, because my professional activity is very busy, there are moments of doubt and weakness.
October 2009: appointment with Dr. Cassoux at the Salpêtrière, the treatment seems to work and the decline in my vision has stopped: good news. We therefore decide to lower my treatment gradually to theoretically finish at 9mg ver September-October 2010 and meet again in November 2010.
November 4, 2010: Dr. Cassoux tells me that I have a relapse (which does not surprise me because you see that the state of my vision has deteriorated). New treatment started, we go back to 15 mg of prednisone and we add 3 injections of Roferon A (interferon) per week. I go home, rather disappointed and I contact the nurse. The first injection is scheduled on Wednesday at 19:30. First injection of 3M unit which is done without worries (the injection is done in the 'fat' of the belly and brings no pain).
November 5 at 1:00 am: I wake up suddenly and I'm convulsed, shaking and I can not move or breathe. I see my wife lying next to me and I do not have the physical possibility to warn her that my last hour has arrived .. !!!. I am suffocating ... I am a prisoner in my body ... Miraculously, my wife wakes up (it is probable that she felt my discomfort intuitively) and sees me in this lamentable state. Panic on board at first, then phone to the SAMU who is present 10 minutes later (thank you Dr. LEMELLE). Departure in the emergency room where I am hospitalized and where I recover quickly.
I contacted Dr. Cassoux who told me to switch to 80 mg prednisone and meet again in a month.
Since I stayed at 20 mg of Cortancyl, then 15 mg until May 18, 2011, when I went to see the PR Brézin Hospital COCHIN.
It is an extraordinary service in which you finally find an answer to your questions and in which you are no longer just a social security number, but a patient who needs answers !!!
We did a lot of tests (angio, OCT, ...).
I return this Monday, May 23, 2011 for another battery of tests to launch a research protocol conducted by Abbot Laboratories, in partnership with UCLA (US University).
Finally a hope !!
I will be the guinea pig and will keep you informed (see FACEBOOK) of the sequence of events.
See you on 20 and 27 June 2011 for the first injections to find a solution, in Cochin in the service of Professor Brézin.
June 20: first injection and resumption of high dose corticosteroids (60 mg)
June 27th: second injection and gradual decline of corticosteroids.
Then there will be an injection every 15 days that will be made by my wife.
July 19: First verification visit to Cochin by PR Brézin. Everything is fine, although the injection gives me a headache every time. The effects of cortisone are felt but we must resist a few weeks.
July 29: Second visit to Cochin. The inflammations of the retina are now weakened, but it is not known for the moment whether this is due to corticosteroids or the product. My Hayes who was at 2+ is now at 1+, which is positive.
August 11th: third audit. from Cochin. My right eye has lost a bit, but my Hayes is now at 0.5+
September 12: Meeting in Cochin with Prof. Brézin. After verifications and tests it appears that I recovered all of my central vision 10/10, which is exceptional, while lowering the cortisone to 3mg / d, up to 0 mg / d at the end of September. I have an appointment with October 7, business to follow ...
October 7, 2011: The day Friday was very tiring because I had to do all the exams (more than 4 hours of non stop tests) some not very funny! But had just to have a perfectly clear situation to discuss with Professor Levinson (this is not stenson by the way!)
We talked about 2:00, and as the Brézin is really a good guy! Nice ... American style! Like the Cochin team.
2 things :
1 / my central vision has progressed again (I will soon see the ultraviolet if it continues!), Which is great
2 / my peripheral vision is dead and I will never get it back! which is less fun! (2/3 of the eyes are screwed!)
I must take care of my central vision, which is the most important.
There is a slight macular edema (around the optic nerve), which requires 2 times more attention.
Other than that, I do not take any more cortisone. Finally, I see again!
However the treatment gives me the impression of having the flu permanently (headache, body aches) and seems to give me aches in the joints. It's to follow.
Finally, we discussed with Professor Levinson about starting a research on stem cell transplantation to reconstruct the retina. This is an option that is mentioned but which is only at the stage of the mouse.
Next appointment, November 7th. To be continued ....
business to follow! (FACEBOOK)
Visits of November 7 and December 5, 2011: The central vision is still in place with 12 / 10th despite stopping the corticosteroid for more than 2 months - It seems that the drug is effective.
Next visit on December 26, 2011 -
Visit of January 26, 2012: RAS everything is fine for my central vision. Next appointment: February 27, 2012
As of July 29, 2012, ALL GOOD, I recovered my central vision 10/10 and 12/10.
The visits of August, September and October 2012, are still positive.
We will launch, with Professor Cohen, the first global research on birdshot, and this, as soon as all the funds are together; that is 15.000 € at first
BIRDSHOT RESEARCH PROTOCOL WEEK 72
I come back from my full day spent in Cochin for this time all the exams (angio, fields, ...). It's a really grueling day but the results are there. My central vision is 10/10 on the right and 12/10 on the left. On the other hand, my peripheral vision is "dead" up to 2/3 of my eyes, hence the feeling of living permanently in a tunnel. To know that at the beginning of the protocol I had 6/10 and 8/10 and that my peripheral vision state worse because of the inflammation of the retinal vascularization. A final review will be done on December 10th. to be continued...
7 JANUARY 2013 - END OF PROTOCOL N ° 1 - 10/10 REPORT ON EACH EYE - A CENTRAL VISION RECOVERED - ON THE OTHER HAND I DEFINITELY LOST 2/3 OF MY EYES-
STARTING A NEW PROTOCOL THAT WILL LAST UP TO 2016 - FOLLOW ...
do not hesitate to help us !!!
STARTING THE NEW HUMIRA COCHIN PROTOCOL - WEEK 2 -
This is the start of this new protocol with Cochin and the service of HUMIRA's Pr Brézin - Injection for 2 per month and visit to the hospital every 15 days in a first time then every month and finally all 3 months - with constant follow-up (blood - respi - CV ...) - The difference with the first protocol is actually to have the certainty of having the drug and not to work double blind - I will keep you informed of the sequence of events and the evolution of things -
Now 8 months that I do not take more treatments, the goal, in agreement with Professor Brézin is to see if the disease can 'stagnate' after taking Humira (anti tnf alpha) - next appointment on October 2, 2014
JUNE 2015 / After more than 18 months now, sana treatments and a quarterly follow-up in Cochin, no noticeable changes and 8/10 to each eye. next appointment September 28 for the birdshot day.
SEPTEMBER 2015: an inflammation is back, go with Dr. PASCAL COHEN TO SET UP THE CELLCEPT.
JANUARY 2016: START OF THE CELLCEPT, TO FOLLOW ...
JANUARY 2016: We agreed, with Dr. Cohen, to start taking Cellcept gradually, to avoid the inconvenience that is related to the drug.
January 20, 2016: I'm at 2g / day, and for the moment I do not feel any adverse effects. Case to follow!
2016 -2017: Nothing to report new appointment for the birdshot days in Cochin on September 18, 2017.
IMPORTANT NEWS 2016
FOLLOWING A DISCUSSION WITH PR BREZIN IT APPEARS THAT WE WILL OBTAIN THE APPROVAL FOR THE CURRENT HUMIRA 2016 AND PRIORI TOWARDS JULY-CA VALAIT THE FOLLOWING FOLLOWING THIS PROTOCOL!
June 206 we obtained the AMM for the Humira in France.
SEPTEMBER 18, 2017: Meet with Professor Brézin, who is traveling today, so I see Professor Dominique Monnet, who I know before he becomes a professor. Apparently we have a restart of inflammation, treated with 10 mg of cortisone and appointment scheduled January 16, 2018 avaces Professor Brézin.
January 16, 2018: go to 10:15 with Dr. Brézin and confirmation of the inflammation. With a cimmun agreement we decide to care with l4Humira (anti tnf alfa) and followed at 3 months)
October 8, 2018: My birdshot day at Cochin Hospital, Monday, October 8, 2018: Sylvain Mignon - The news is excellent for me.
Like HG Wells or Francis Scott Fitzgerald, who so famously tried to play with time, in their writings, I can say that I found the elixir of youth.
I am treated by Humira (1 injection of 40 mg / 2 weeks) since January 2018, and after spending the day in Cochin as part of the birdshot days that we organize with the AP-HP, it appears that my central vision is is greatly improved (9/10 and 10/10, instead of 8/10), that my visual field has him, progressed spectacularly and that the global inflammation has calmed down well.
At this point, Professor Monnet, who examined me, (very friendly, very human and very professional), told me that I had recovered the view that I had in 2012!
Be a good in 6 years time! A new Benjamin Button ...!
This is great news that should also give hope to all patients around the world.
This is excellent news that calls for another because I will communicate a little later on the advance of genetic research which we launched the process a few months ago.
I would like to thank Chantal, Claudia (and their respective husbands), Agnes, Mr Lebigot who were present today as part of their birdshot follow-up.
Thank you also to all the teams of the Cochin Hospital, who are now perfectly "wedged" in this heavy organization.
Things are progressing, and having been one of the guinea pigs of the Humira clinical study, I am pleased to see that this involvement gives positive results in a global manner.
I suffer as dozens of people in the world, a disease that does not interest the laboratories because not profitable from the economic point of view.
So I decided to create this foundation that aims to raise funds that will allow researchers to find a solution, at least I hope so. I contacted the services of PR Sahel who runs the institute of vision in Paris at the 15/20 hospital. The deal is to bring him money to launch a research protocol hoping also that by looking on this disease, one can also discover solutions for other diseases ....
It will not be said that I would not have tried everything to find a solution to our disease.
I always thought that if one day we discovered that my children and grandchildren had a birdshot, I could not bear that they tell me that I had and I did not do anything!
"FLUCTUAT NEC MERGITUR ..."
See you soon and thank you for any help you can provide ....