Hi everyone,
Good Lord, I have been away for a little over a week and I am so behind. I wanted to share that my brother Matt starts his Prosorba treatments tommorrow in his Rheumy's office.
I will keep you all posted on his progress since he continues to ghost, or lurk, or read but not speak up. Thank you for being here because even though he doesnt speak up he does talk to me and it does help him to know he is not alone out there. I suspect that once he finds his voice here he will be among friends!!
God bless you all!!!
Well continue to follow Matt's progress and be anxious to hear of his success!!
Good Luck Matt!! (We really would love to have you here as well
Hope you're well Linda. Thanks for the update.
Anyone going to tell me what Prosorba treatments are I'm really curious to know about this, my brother in law is trying to talk me into this, but of course insurance doesn't cover this and it's pretty expensive, so please Matt keep us up to date and good luck with this procdure.Roxy~here a a few links that Linda posted when we first started discussing this and she spoke of her research for her brother:
http://www.ra.online-plus.biz/prosorba.htm
http://www.arthritis.org/conditions/DrugGuide/alternatives.a sp
http://www.arthritis-treatment-and-relief.com/prosorba-colum n.html
MATT~You have to come out of your shell now Sweetheart and share your expereince with all of us on this treatment.
Please, keep us updated on your progress. Good and Bad. We learn so much from each other and you are going to have valuable first hand experience we'll all be interested in hearing about.
Thanks Lovie for the links. I read the prosorba treatment and it sounds VERY hopeful. It is so good to know that they are coming out with new treatments all the time for ra. Especially since many times medications eventually are ineffective. Who knows, maybe some day a cure!
PS SORRY ABOUT CAPS; KEYS STICKING AGAIN
Yes he did it!! First treatment of 12, on Wed. Some impressions: The room was chilly so the nurse made him warm with blankets before they started (Matt doesn't do well with the cold) They took a history and explained everything so that made Matt more comfortable too. The column is about the size of a mug or pram oil filter for the car <S>. The machine looks kind of complicated but once they explained it, it was easy to follow. It is hard when so much is out of your control Matt needs as much information as he can get. The nurse was wonderful!! (I can be kind of critical of my fellow nurses). They placed a needle in each arm and beyond that he said there was no discomfort. He did really well although the treatment did take longer than they said it would. She told me that is not unusual for the first treatment because they are getting to know his veins and they cannot get the column ready before they see him the first time. They suggested some activity for his veins to keep them in good shape for the rest of the treatments. I spoke with Matt today and he said he doesn't feel any different. He did say he felt tired after the treatment for a couple of hours and the nurse said that might happen. I am encouraging Matt to share his experience. He has promised he "might do that".
On to week 2!!
Hi Roxy,
The answer to what is it? Well this is what I have learned. RA is an autoimmune disease which means that your immune system attacks self. This you know first hand. The column is made of little grains of silica that they coat with a poymer which makes the protein stick to it. Then they spin your blood in this machine to separate your plasma where the immune complexes hang out. They run your plasma through the column and the immune complexes take a look at the proteins in the column they say hmmm this doesn't belong here and they stick to the proteins in the column. In this way it sort of retrains your immune complexes to attack something more appropriate than self.
I hope this helps.
Hi Karen,
Matt's Rheumy told him about the treatment and that led us on a mission to find out all we could. Matt has failed DMARD's and his biologics worked but 2 infections and he had to stop taking Enbrel. No choice. Matt's insurance does pay for this, however I did see that someone elses insurance didn't .. I thought if it was an approved tx and if Medicare pays that private insurance had to pay. I bet if the doctor spoke to the insurance company they might.
I will keep you posted. This is exciting for Matt who was getting discouraged with the medications, and all that prednisone.
What type of infections caused them to pull him off Embrel Linda? I'm off my Humira and MTX for the second time in just a month due to infection. I've now got bronchitis and a sinus infection. I'm fairly certain everything wasn't cleared up the first time before I started using my medication again. That was my mistake.
I sure hope it doesn't cause them to take me off of it all together. It really makes a huge difference for me.
Just curious.
Lovie
hi Lovie,
Matt really liked the Enbrel on so many levels. I think I have said before that he likes a measure of control. He had an upper resp infection that resolved, he went back on the Enbrel and about 6 months later developed a cellulitis, a skin infection of his hip. It took a long time for the cellulitis to completely clear up and the Rheumy felt it would not be a safe choice to resume the Enbrel. Prosorba, although it is not the last choice seems the best choice right now.
I wish you the best with your biologics I have heard good things about Humira
Great explanation Linda. I am excited to hear about how Matt's treatment goes. Keep us posted!Please keep us posted on your nephews progress. I saw on a TV program where a lady was in so much pain she had to crawl when she went up stairs and used a wheelchair the rest of the time.
After weeks of treament with the column, she was able to abandon the wheelchair and her life turned around for her. It was amazing. She was able to play with her children and resumed a much better quality of life. Is it correct that the effects can last up to 75 months? How wonderful that would be!
I hope your nephew will have the same spectacular results.
Hi Less13
In the studies I have read about the Prosorba treatment, the effects vary for each person, but I have read that it can last for years and if it needs to be repeated it can be just as effective the second time. We are hopeful that this will work for Matt (he is my "baby" brother btw, I used to change his diapers as I remind him sometimes)
His next treatment is Wednesday, I will let you know how he is doing. So far he has not noticed any changes.
Hi Everyone,
I thought that Matt would have shared by now but instead he asked me why I hadn't,,, go figure. Matt tells me his fingers and hands are hurting. Which brings us to the last 2 weeks. After treatment #2 Matt had a pretty dramatic flare-up. He was back on the phone with the doc and got a shot of MethylPred. He pretty much said it was just like the event that got him diagnosed with RA so that is pretty bad. The good news is that, that is exactly what the doc wants to happen, and it is the response he hopes for. It means that his immune system is paying attention. He also said the earlier that happens the better the response should be long term. Week #3 was last Wednesday and to his credit Matt is seeing this through. He is on decreasing doses of Pred and did not have a huge flare this time. He did spike a temp Wednesday night although we checked with the nurse who said that sometimes that will happen. She was right it only lasted a few hours, and it wasn't that different from the temps he sometimes runs. Matt's next treatment is Wednesday morning. He did check in with some of the former patients to compare experiences and they are all very encouraging about sticking this out despite the discomfort of a flare-up. It seems that that is a good thing. They all seemed to agree that it was a small price to pay for the way they feel now. Matt remains very positive.
I will keep you posted unless we can all get Matt to start typing.
Please Linda. Keep us posted. I am very interested in options. Thank you so much for your posts. LINDA RN... THIS SOUNDS VERY MUCH LIKE A PROCEDURE I DID FOR MY UNCLE FOR HIS LEUKENIA. I WAS INJECTED WITH A DRUG TO MAKE MY WHITE CELLS ACTIVE, AND THE PROCEDURE AT MD ANDERSON CANCER CLINIC REMOVE THE WHITE CELLS FROM MY BODY....THINK IT WAS CALLED 'WHITE CELL HARVEST' AT THAT TIME. HE WAS BEING TREATED FOR LEUKEMIA AND ONCE PROCEDURE WAS COMPLETED, I HAND DELIVERED WHITE CELLS TBAG TO HOSPITAL AND NURSES HOOKED THE BAD UP TO MY UNCLE RIGHT AWAY TO FIGHT HIS CANCER. SEVERAL PEOPLE IN THE FAMILY'S BLOOD WAS CHECKED FOR COMPATABILITY. I WAS ONE OF THE FEW CHOSEN. SOMETIMES I WONDERED IF IT "DID" SOMETHING TO ME AS ME AND MY UNCLE WERE THE ONLY ONES COMPATABLE TO GIVE AND WE BOTH HAVE AUTO IMMUNE PROBLEMS. DON'T THINK IT WAS FROM PROCEDURE BUT MAYBE THE DRUG THEY GAVE US TO MAKE OUR WHITE CELLS MULTIPY SO MUCH. THE SHOTS MADE YOU FEEL FLU-LIKE AND GAVE YOU A FEVER. LINDA, ARE THEY REMOVING WHITE CELLS AT ALL?
Hi Karen,
I know that they use this very machine to do all sorts of donations including platelets and white blood cells. This treatment does not collect any blood cells and they dont give him anything to stimulate cell production. The autoimmune complexes float around in the plasma and that is the lightest part and rises to the top in the spinner. then they run the plasma through the column and hopefully the immune complexes stay in the column, and the ones that go back to the body with the rest of the blood have learned a lesson while at Prosorba column school. That lesson is to attack something besides self. Matt has an appt at 10am tomorrow. I will keep you posted.
Matt also thanks you for all your good thoughts.
We're all still anxious to know of Matt's progress...his treatment could be very important to all of us.
Please continue to encourage Matt to join us.
We're real nice I promise!!
Matt finished his Prosorba Therapy last Wednesday!!! He had a couple of very bad weeks in the middle about week 5 to 7. He was a hurtin man. I have to tell you though the first thing I noticed was about week number 8 that he was a lot less fatigued. He said he was finally getting some real sleep for the first time in years. Matt also came off his Prednisone last week (that has been kind of scarey) for the first time in years. He says that he noticed a real difference in his comfort level about week number 9 and the doc had already started tapering his prednisone by then. The weather still seems to affect him and probably always will. I still see him rubbing his legs sometimes and when I ask him he sort of chuckles and tells me he doesnt even realize he is doing it, He guesses it is more out of habit than discomfort. I think this has been a tiring but extremely positive experience for Matt and for those of us who love him. I am amazed at the difference it has made in his life. This week Matt is taking off a few days and for the tirst time in years it has nothing to do with doctors or therapy. Another interesting thing the doc said was that he could continue to improve for months after the end of treatment. Pain free would be great but I think Matt appreciates the difference already.
You are all in my thoughts and prayers and I kind of think of you as our extended family.
Thank you for sharing Matt's prosorba treatment story. I really needed a fresh dose of hope.Leslie
Linda~please tell Matt that we would REALLY love for him to join us. He's got valuable experience that many here would be interested in knowing more about. We'd love for him to join us and let us follow his progress with him. We'd be great theropy for him too. He'd quickly gain pleasure in the fact that there are lots of people out here just like him.
Please tell Matt we've invited him...and keep us posted on his progress.
Hope you're doing well yourself Linda.