Antibody (immunoglobulin) rates and RTX

[KathyB]

From what I gather looking at old test results, it isn't listed or performed in ordinary bloodwork. I know my rheumy specifically asked for the IgG this time in addition to the IgM which he ordered last time along with the IgA and IgE. He wasn't much interested in the A & E, though -- mostly the G & M since they are throughout your body. This was all new info for me as of July, so I don't know if I have prior rates to compare to. I'm really curious now about IVIG therapy and plan to ask my rheumy for more info as it relates to my case.

Blessed -- which of your daughter's rates is a 200?

Debra C -- why aren't you taking the Cellcept?

KB

[blessed2bamommy]

From what I gather looking at old test results, it isn't listed or performed in ordinary bloodwork. I know my rheumy specifically asked for the IgG this time in addition to the IgM which he ordered last time along with the IgA and IgE. He wasn't much interested in the A & E, though -- mostly the G & M since they are throughout your body. This was all new info for me as of July, so I don't know if I have prior rates to compare to. I'm really curious now about IVIG therapy and plan to ask my rheumy for more info as it relates to my case.

Blessed -- which of your daughter's rates is a 200?

Debra C -- why aren't you taking the Cellcept?

KB

My daughter that has low IgG is the one with Wegener's. She's 2nd daughter, currently 13 years old. Her doctor said her IgG is low because of the Rituximab.

[KathyB]

Yes -- definitely understand the low rates due to Rtx. That's exactly what my doctor said. So for now, it's no more Rtx til my rates go up! How about your daughter?

KB

[blessed2bamommy]

Yes -- definitely understand the low rates due to Rtx. That's exactly what my doctor said. So for now, it's no more Rtx til my rates go up! How about your daughter?

KB

She, too, is done with RTX (slowly learning all the abbreviations) Right now she's on...... Keppra (anti seizure), Lisinopril (for BP), Tums, Ferrous Sulfate (Iron), Methotrexate (once a week injection), sodium Bicarb, Omeprazole, folic acid, Prednisone, Bactrim. I think that's it right now.

[KathyB]

She, too, is done with RTX (slowly learning all the abbreviations) Right now she's on...... Keppra (anti seizure), Lisinopril (for BP), Tums, Ferrous Sulfate (Iron), Methotrexate (once a week injection), sodium Bicarb, Omeprazole, folic acid, Prednisone, Bactrim. I think that's it right now.

Wow -- and just 13 years old? She must be an extraordinarily strong young lady! I'm sure she inspires you all! Hope her health continues to improve!

KB

[Debbie C]

Kathy, I'm not taking Cellcept because when I saw my kidney Dr. ( who is very up on WG ) said if all my blood work keeps coming back fine then don't take it..it only messes uo your gut,gives you diahrea and is not good stuff..so unless something starts showing up on my bloodwork to stay away from it. Just praying my bloodwork is still good in a couple of weeks

[KathyB]

Kathy, I'm not taking Cellcept because when I saw my kidney Dr. ( who is very up on WG ) said if all my blood work keeps coming back fine then don't take it..it only messes uo your gut,gives you diahrea and is not good stuff..so unless something starts showing up on my bloodwork to stay away from it. Just praying my bloodwork is still good in a couple of weeks

Interesting, Debra. The only information I have on the maintenance drugs is what I've learned from folks the forum and on med websites. I only take prednisone in addition to the Rtx treatments. My doctor and I have discussed maintenance drug possibilities, but no decisions as yet.

KB

[Debbie C]

Kathy ..how often did you get RTX infusions ? I'm only on 5 mg pred too.I'd like to taper down but I'm afraid if I do I'll start having problems.I've only had 1 RTX infusion and the place they did it, I was the first one to have that kind of med there so towards the end they pushed the infusion thru too fast ( time for them to go home ) and I was sick for a few days and the dr. wouldn't let me have any more. I am just one of those people that me and drugs just don't mix well...wine used to be another thing but don't even do that any more. I think if I get really sick to where I have to start taking high doses like in the beginning I will definately lose it.

[KathyB]

Kathy ..how often did you get RTX infusions ? I'm only on 5 mg pred too.I'd like to taper down but I'm afraid if I do I'll start having problems.I've only had 1 RTX infusion and the place they did it, I was the first one to have that kind of med there so towards the end they pushed the infusion thru too fast ( time for them to go home ) and I was sick for a few days and the dr. wouldn't let me have any more. I am just one of those people that me and drugs just don't mix well...wine used to be another thing but don't even do that any more. I think if I get really sick to where I have to start taking high doses like in the beginning I will definately lose it.

Hi Debra -- Sounds like you weren't treated very well during your infusion. There is such a strict protocol for administering the drug, too. I've had such wonderful experiences so far ... I'm sorry yours didn't go well. I've had two rounds of Rtx. The first was started at dx when I was in the hospital -- they administered it slowly with every precaution to make sure I could tolerate it. Then the round continued for 3 additional weeks (4 total treatments one week apart). The 2nd round was six months later (last spring) but with just two treatments two weeks apart. Each time Rtx was administered, the stringent protocol was followed. I was fortunate enough to tolerate it all! But now over six months later when my rheumy thought I'd be having another round, he found through bloodwork that my antibodies (IG levels) are too low and they cannot risk giving me another treatment. They will check my levels again at the end of November and make a decision about further Rtx treatments. In the meantime, I'm being very careful to avoid contact with others and taking precautions to stay well!

KB