extracorporeal photopheresis

Frenchguy

Senior Member
Messages
119
Likes
322
Location
France
Hello everyone,

After a big crash who keep me bedridden during 6 weeks, I recovered to my severe baseline state.

For your information, i will fly to Morocco with my wife May 13.

After many discussions in France, it's impossible to have this treatment off label (even if you propose to pay the treatment). ME/CFS is considered psychological and the French Healt system don't want to treat ME/CFS people with Photopheresis given there is no proof this treatment benefits

Given the finding of Mark Davis on T cells, my lab results which show CD8 lymphocytosis, the negative rituximab phase 3 and the very good preliminary data on cyclo study, I worked hard to find a way to access to this treatment.

I have the chance to have a very good internal medicine doctor who write me a letter to try to find an Hospital outside France who is ok to perform this procedure.

I have contacted many center in France, Belgium, Germany and others country with response like "Did you have seen a psychiatrist for evaluation ?".
Finally a colleague of my wife have a sister who is heamatologist in Morocco and after discussing my case with the specialist, they accepted.

I will receive 10 photopheresis sessions (once a week during 10 weeks).
The cost is low compared to US, 1350€/session (but high for a French).
My family will help me to pay the treatment.

The good news is if he the treatment works, my doctor tell me that I will "force the system" in France to pursue.

I am little scared to the flight given it's will be the first time and i am very sensitive to sounds and Lights.
I have continuous headache and tinnitus everyday.
Any advice ?

I will update this thread during the treatment,

David
 

alkt

Senior Member
Messages
332
Likes
661
Location
uk
@Frenchguy have you seen the thread on chiari the two symptoms you mention are a match for many on that thread. best of luck and I hope your travelling does not cause you any lasting harm .
 

Runner5

Senior Member
Messages
322
Likes
544
Location
PNW
I just bought special ear plugs that adjust air pressure so the ears don't pop or change dramatically for flights, driving over mountains etc. Usually changes in air pressure make me have migraines and weakness. I don't know if they work or not though as I haven't had a chance to test them. Sometimes listening to sound cancelling headphones helps me and dark sunglasses. It's very difficult for me to travel even by car so I wish you really well getting to Morroco. I'm unfamiliar with the treatment you are posting about, so maybe you could blog here or post some updates and let us know how it goes for you. Maybe some time in the desert will help as well.
 

Frenchguy

Senior Member
Messages
119
Likes
322
Location
France
Hi everyone,

I update this thread for your information.

We meet the heamatologist who perform photopheresis at the hospital yesterday.

She is not knowledgeable about ME/CFS, but after explaining my symptoms and my life with the disease (and after seeing my tired face), she understand that it is a real disease.

She is ok to treat me and want to begin by 2 sessions / week for two weeks. After the two weeks, we will adjust the treatment schedule based on my response.

I will have my first session monday am, and the next Thursday am. I will be hospitalized for each sessions.

It's difficult to elaborate a treatment schedule given this treatment haven't been tried with success in ME/CFS.

I am crashing today after the day at the hospital to meet the doctor, blood test, chest ray...

Fortunaly, we have a great apartment with the sea just in front. The sea give a fresh air which is good for me.

Fingers crossed,

David
 

Frenchguy

Senior Member
Messages
119
Likes
322
Location
France
@Frenchguy have you seen the thread on chiari the two symptoms you mention are a match for many on that thread. best of luck and I hope your travelling does not cause you any lasting harm .
Hi alkt, yes I have seen this thread but I have every symptoms of ME/CFS (PEM after little physical activity of mental activity, chronic sore throat, severe dry eyes syndrome, cerebral hypoperfusion, lactic acid sensation after walking a little and so more ...)
 

Frenchguy

Senior Member
Messages
119
Likes
322
Location
France
@used_to_race

Hello,

I am near Casablanca. Some days the heat is unbearable.

My first 3 sessions went well. I had to have the fourth Friday, but my POTS did a flare and I had to take bisprolol.

Unfortunately it is incompatible with the treatment. The session was canceled.

I will have my fourth session tomorrow at 11am.

I am always very tired. The slightest action makes me crash. I spend most of the day lying down. Each session at the hospital make me crash (have to spoke to the doc, nurse and walk a little).

As soon as the crash begins, I have horrible headaches and tinnitus in my right ear.

For the moment there is no effect. I admit to even thinking of stopping treatment but I think it's too early. In some pathologies the improvments begin at 2 or 3 months.

David
 

used_to_race

Senior Member
Messages
145
Likes
225
Location
Southern California
David, you are in my thoughts! I know it probably feels like your only option, but you are so brave for trying this. Your courage and ambition really inspire me and I hope that you can get better from this treatment. Photopheresis is something I would really like to try as well, due to my specific symptoms and the interest in T cells coming from the researchers in the Bay Area and elsewhere. Bonne Chance!
 

Frenchguy

Senior Member
Messages
119
Likes
322
Location
France
Hi everyone,

Just to say you that I stopped photopheresis treatment after 4 sessions.

I started feeling really weak after the third session and wanted to have a fourth to see.

After the fourth session, I wasn't able to stand up and needed a whelchair to come back at home. I ended up in severe crash during 5 days (in dark room not able to talk and very difficult to eat and drink).

My internist doctor advised me to stop the treatment. It was a very difficult time because I worked so hard to access it.

I am now at home in my severe baseline condition.

There is no side effect about the treatment itself, but i was drained after each session.
The stamina was affected and sleep too.
I haven't noticied any effect on my symptoms (cognitive dysfunction, constant head pressure, sore throat, PEM).

After testing several immunomodulatory drugs/treatments (high dose prednisone, imuran, photopheresis), it seems that my condition is driven by an other mechanism.

David