Antibody (immunoglobulin) rates and RTX

[KathyB]

I had an interesting day at MCV today with my nephrologist and ENT. All is going well. ENT saw no issues and good flow through the ear drums. Amen! I haven't had an initial hearing test either and will schedule. My nephrologist was extremely pleased with my kidney function (1.56 creatinine). Not bad for only one kidney functioning and only 50% of it functions! Another amen! She also said to only use the Voltaren gel sporadically on my hand or anywhere else. It still is absorbed into the body. Good info!

So now I'm looking to the September 24 appointment with my rheumy when we discuss next treatments. Hence the request for info from you all -- what can you share about immunoglobulin (antibody) levels? I've done some research and understand the IgA relates to eyes, saliva, and mucous membranes of bronchi and intestines. IgE relates to lungs, skin, mucous membranes, and most specifically to allergies. IgM is the first antibody produced in reaction to infection and is present in all circulating fluids. As I mentioned in other threads, my rheumy is concerned about my low IG levels and may not prescribe RTX again this fall because they may be causing the low levels. My worst level was the M at 23. One site said low was 55 and another said 40. ??

I was reminded by my oldest sister today that when my niece was just 21 she received IG infusions for 1 1/2 yrs to rebuild her strength after a nasty infection that almost killed her (related to Lyme disease). Very interesting! I guess I should have looked first (and will now) to see if this was a topic from the past! Your thoughts are appreciated!

KB

[Palmyra]

Good topic KathyB, and one that I feel is certain to be on the forefront regarding future treatments for MPA/Weg. I have contact with a young man that has had such serious issues with life threatening infection following immunosuppression with this disease, that he has spent quite a lot of time on IVIG and has an infectious disease specialist as part of his medical team. Even with therapy that is as targeted as Rituxin, his badly damaged pulmonary system is not able to recover from even minor infections. He has been treated with RTX for some time now, but recently halted treatment after one infusion, due to symptoms of upcoming infection.

IVIG is used to in combination with many chemotherapies. I have limited knowledge of its efficacy, and have not seen much mention of its use on this site. I do know that it is very expensive.

Please keep us posted regarding what you learn.

Many thanks, JT (mom of Alison).

[KathyB]

On Monday, I had an appt with my rheumy. Our primary discussion was still the issue of low immunoglobulin (antibody) rates and subsequent infusions of Rtx. My IgM was now 25 (from 23 two months ago) and the acceptable range is 50-250. I also learned by IgG was 511 with acceptable range being 700-1700. This was a new test so I don't know prior rates. From what I understand, Rtx would further reduce those rates. I'm already quite susceptible to infection. Since I haven't been flaring, he has decided not to administer another round of Rtx for fear of more (different!) trouble until those IG rates improve. BTW, he mentioned a conversation with a UK doc about a new single dose protocol for Rtx. Another interesting idea. I'm happy to report my creatinine is holding steady at 1.58 -- bless my resilient kidneys!

KB

[drz]

Glad to hear kidneys are doing OK. That is bright spot. Fear of infection is realistic and my doctors often with held the CTX for me whenever my risk of infection got too high. A bad infection can kill us quicker than the Weg's dog.

[Palmyra]

On Monday, I had an appt with my rheumy. Our primary discussion was still the issue of low immunoglobulin (antibody) rates and subsequent infusions of Rtx. My IgM was now 25 (from 23 two months ago) and the acceptable range is 50-250. I also learned by IgG was 511 with acceptable range being 700-1700. This was a new test so I don't know prior rates. From what I understand, Rtx would further reduce those rates. I'm already quite susceptible to infection. Since I haven't been flaring, he has decided not to administer another round of Rtx for fear of more (different!) trouble until those IG rates improve. BTW, he mentioned a conversation with a UK doc about a new single dose protocol for Rtx. Another interesting idea. I'm happy to report my creatinine is holding steady at 1.58 -- bless my resilient kidneys!

KB Thanks for keeping us posted on your result and recent tests. Did your doctor mention addressing your low immunoglobin levels with IVIG therapy? I have an acquaintance that has received such treatment following RTX/low IMG/frequent infection issues in the past.
And, great news about your kidney function! Tell them to keep up the good work!

[KathyB]

Thanks for keeping us posted on your result and recent tests. Did your doctor mention addressing your low immunoglobin levels with IVIG therapy? I have an acquaintance that has received such treatment following RTX/low IMG/frequent infection issues in the past.
And, great news about your kidney function! Tell them to keep up the good work!

No discussion on the therapy, but I will definitely ask ... THANKS!!

KB

[Debbie C]

Great news about yr kidneys. Once you mentioned all those different tests the IgM,IgG etc. I checked my blood and urine tests and never had that checked,is that something that should be checked on a routine basis. I go to the C.C. on the 29th of the month to see my reumy.I think he may be a bit mad since I'm not taking the Cellcept and I want to start lowering my pred to 2.5. I have to go get my blood and urine done in a couple weeks ..keeping my fingers crossed.

[blessed2bamommy]

My daughter's IgG levels are low (200). Her doctor wants to do IVIG but thus far insurance has said they won't cover it. The doctor is appealing the decision so we wait and see.

[delorisdoe]

in canada, as long as you are getting the treatment at a hospital it is covered by the hospital/gov so insurance is not even in the equation. good thing seeing as 12 years ago it was 10 000 a day for 3 days for 2 weeks at a time.

[Sangye]

Debra, it isn't typical to check immunoglobulin levels unless you're getting frequent infections.

WHY aren't you taking the cellcept?? Please follow your doctor's instructions. The docs at CC are excellent.

[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. :cool1:

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