Life's been painful
I figured it was time for an update since I got stubborn this week with my treatment. I refused my IVIG treatment. Why you ask? Because my labs have been bananas and I wasn't sure about it anymore.
I have elevated liver enzymes and elevated IgG so at my yearly check the liver doc is worried that by quitting my cellcept, I may have unleashed a new monster. (Yes the cellcept stop was a stupid decision on my part from a comment that my neuro made that I should not be taking both cellcept and humira, my now in hindsight poor decision was to quit the cellcept because I was hoping to rid my body of the unrelenting though not terrible joint pain)
Tuesday's appointment with new rheumy showed mildly elevated ANA with speckled pattern, mildly elevated anti-MCV, and elevated compliment 3. Rheumy thought that these antibodies could possibly be passed by IVIG and therefore couldn't be trusted and asked that I stop all RA meds.
After email from my neuro asking me to have IVIG and contact with infusion therapist (very reassuring ) I had my IVIG yesterday and will give the rest to prayer until someone decides what to do with me.
Basically for anyone that hasn't fallen asleep by now, here is what I learned from the pharmacist. I recieve weekly IVIG because I seem to decrease levels quicker than the average and my MG has been much more manageable since the weekly start. Elevated IgG levels are expected and desired with my treatment, but he cannot say whether they are extra high due to liver disease and does not recommend stopping therapy to find out. The elevated levels are to "trick" my own body into not activating its own immune system.
He also said that he could find no documented or even unverified references to elevated ANA or anti-MCV levels due to IVIG and therefore believes these lab results to be true to me. I did not know about the compliment 3 elevation at that time.
So I am back to still being uncomfortable, tired, and upset tummies (they weren't from any of those meds I quit) I'm hoping the rashes will ease since the Humira should be working out of my system but am getting prepared for times when I will not be able to dress myself or bathe without assistance getting in and out. God's got me and maybe he will nudge the powers that be in the right direction.
Getting excited for the walk on May 9. Hugs to all.
I have elevated liver enzymes and elevated IgG so at my yearly check the liver doc is worried that by quitting my cellcept, I may have unleashed a new monster. (Yes the cellcept stop was a stupid decision on my part from a comment that my neuro made that I should not be taking both cellcept and humira, my now in hindsight poor decision was to quit the cellcept because I was hoping to rid my body of the unrelenting though not terrible joint pain)
Tuesday's appointment with new rheumy showed mildly elevated ANA with speckled pattern, mildly elevated anti-MCV, and elevated compliment 3. Rheumy thought that these antibodies could possibly be passed by IVIG and therefore couldn't be trusted and asked that I stop all RA meds.
After email from my neuro asking me to have IVIG and contact with infusion therapist (very reassuring ) I had my IVIG yesterday and will give the rest to prayer until someone decides what to do with me.
Basically for anyone that hasn't fallen asleep by now, here is what I learned from the pharmacist. I recieve weekly IVIG because I seem to decrease levels quicker than the average and my MG has been much more manageable since the weekly start. Elevated IgG levels are expected and desired with my treatment, but he cannot say whether they are extra high due to liver disease and does not recommend stopping therapy to find out. The elevated levels are to "trick" my own body into not activating its own immune system.
He also said that he could find no documented or even unverified references to elevated ANA or anti-MCV levels due to IVIG and therefore believes these lab results to be true to me. I did not know about the compliment 3 elevation at that time.
So I am back to still being uncomfortable, tired, and upset tummies (they weren't from any of those meds I quit) I'm hoping the rashes will ease since the Humira should be working out of my system but am getting prepared for times when I will not be able to dress myself or bathe without assistance getting in and out. God's got me and maybe he will nudge the powers that be in the right direction.
Getting excited for the walk on May 9. Hugs to all.
Replies
Wow, Deb. Bless you, these are a lot of significant changes, going on here. So you have stopped Humira, and have stopped Cellcept? The doctors are not afraid of throwing intensive therapy at you, so I wish they would re-consider Rituxan, which can be used against both MG and RA. That would be efficient, cost-effective, at the very least. I don\'t know, maybe your blood panels reflect something that scares them away from Rituxan. But, anyway. I\'m just mouthing off, in frustration for you. I\'m glad you can interpret all those panel numbers. Whew, medical-ese, not a native language for me. Thinking of you, prayers always.
The problem is Ross, my little knowledge is not good and I\'m learning that docs don\'t know everything...They keep muttering \"all these comorbidities.\" I\'m a bit blue today, but as I said, I know God\'s got me. As you know I\'m not afraid of dying but I could think of better ways to go then cirrhosis of the liver. They tell me they got new meds that help with that ... So glad for your and Ellen\'s friendship, Ross. On a bright note, I did my 15 minutes of exercise by walking in the front woods of our farm today. Rustled some turkey feathers, but otherwise the walk was uneventful.