Benji
Norwegian
- Messages
- 65
I am confused after 9 months.
I started off last september/october, with the two initial doses. Both the infusions went fine, no allergic reactions, and no direct worsening. But some worsening from after the second infusion. A little harder to do what I normally do. But still I managed without having do to changes in my life. After two months of that, I find myself much better. So wonderful, being an early responder. Christmas was full of optimism, from now an, it was regaining life I saw ahead.
Third infusion in January went just as well at the preceding ones. But, the good times slowly came to and end, gradually, over some weeks I deteriorated. So I had som difficult times until it was time for my 4'th infusion, three months after the third. I had read some views like "it's probably better to let the body restituate before having an another dose" and found it sensible. So I postponed the 4'th. I was having a hard time until four months after the third infusion. Worse and worse. But suddenly, from worsening, I got much better very quickly. From worse than ever, to much better, in a week. So I had my response back. And so I thought it was time for another infusion. So I did, and the same happened, gradually worsening, and now it has been a bit over months, no improvement so far.
I thought maybe the long setbacks were due to the premedication, which is 125mg solumedrol IV. For the last infusion, I asked to have half the dose, and I got 75mg IV. But still , after more than 2 months, I am still no good, so ??
I'm suspected the cortison was the reason, because Fluge and Mella gives premedication only 8mg dexametason orally, maybe they have good reason to minimize the steroids. Some research from Canada also suggests some of us are tolerating cortison very bad. Next time, I will ask if the doctor can give me too, 8mg dexametason orally, instead of the IV solumedrol.
The protocol is also 500mg mabthera on the other doses than the initial, 3 months apart. But now, as I have longer periods in between, I have decided to use 1000mg, which the doctor allowed me too, my decision. At the last infusion the doctor was very interested in my experience, and I can come back whenever I want for the next infusion. I think an appropriate time will be 5 monts after the last one. I have read that the B cells begins to come back after 24 weeks. And, I want to go back being a responder before I'm thinking of the next infusion. At least I hope. Now I am just tired of being sick and hope the response comes back soon. We'll see. This is a journey I thought was much easier than it certainly is. But, I just have 7 months more to keep the B cell depletion as long as the phase 2 study. (Last infusion at 15 months) Which had wonderful results.
I started off last september/october, with the two initial doses. Both the infusions went fine, no allergic reactions, and no direct worsening. But some worsening from after the second infusion. A little harder to do what I normally do. But still I managed without having do to changes in my life. After two months of that, I find myself much better. So wonderful, being an early responder. Christmas was full of optimism, from now an, it was regaining life I saw ahead.
Third infusion in January went just as well at the preceding ones. But, the good times slowly came to and end, gradually, over some weeks I deteriorated. So I had som difficult times until it was time for my 4'th infusion, three months after the third. I had read some views like "it's probably better to let the body restituate before having an another dose" and found it sensible. So I postponed the 4'th. I was having a hard time until four months after the third infusion. Worse and worse. But suddenly, from worsening, I got much better very quickly. From worse than ever, to much better, in a week. So I had my response back. And so I thought it was time for another infusion. So I did, and the same happened, gradually worsening, and now it has been a bit over months, no improvement so far.
I thought maybe the long setbacks were due to the premedication, which is 125mg solumedrol IV. For the last infusion, I asked to have half the dose, and I got 75mg IV. But still , after more than 2 months, I am still no good, so ??
I'm suspected the cortison was the reason, because Fluge and Mella gives premedication only 8mg dexametason orally, maybe they have good reason to minimize the steroids. Some research from Canada also suggests some of us are tolerating cortison very bad. Next time, I will ask if the doctor can give me too, 8mg dexametason orally, instead of the IV solumedrol.
The protocol is also 500mg mabthera on the other doses than the initial, 3 months apart. But now, as I have longer periods in between, I have decided to use 1000mg, which the doctor allowed me too, my decision. At the last infusion the doctor was very interested in my experience, and I can come back whenever I want for the next infusion. I think an appropriate time will be 5 monts after the last one. I have read that the B cells begins to come back after 24 weeks. And, I want to go back being a responder before I'm thinking of the next infusion. At least I hope. Now I am just tired of being sick and hope the response comes back soon. We'll see. This is a journey I thought was much easier than it certainly is. But, I just have 7 months more to keep the B cell depletion as long as the phase 2 study. (Last infusion at 15 months) Which had wonderful results.