@Evangeline Sorry for the delay and am finally getting a chance to reply to this like I wanted to yesterday. Am at my 3rd day of IVIG tomorrow in case I am slow again! Thank you so much for all of your detailed feedback.
I've had 12 infusions so far. I started with two, 2 weeks apart in December/ January of '15, then a redose in June/July and then again in November/December.
It sounds like you started with the traditional autoimmune dosing of two infusions, given 2 wks apart (days 0 and 14). We are deciding if this is the best way for me vs. the myasthenia gravis dosing of four infusions, given one week apart (I do not have MG but using this as an example). Am not sure if I understand the rest of your dosing schedule? Did you have maintenance infusions at 3, 6 & 12 months point, or just every six mos you had another set of two infusions?
No. I'm on the RA dose of 1000mg at day 0 and day 14.
We are deciding if I will do the 375 mg/BSA formula (around 600 mg per dose for women) vs. the 1 gram formula regardless of weight.
First interval was 6 months, second interval was 5, have now been moved to 4 month intervals. Next dose is in another few weeks.
How did they decide that interval? I have not heard of that before!
I started with the standard pre-meds (1000 mg Tylenol / acetaminophen, 100 mg medrol iv and 50 mg benadryl). The Tylenol doesn't do much except add to the sweating the medrol brings on. I've since convinced the doctor to lower the medrol first to 60 and my next will be at 40. I don't tolerate prednisone all that well and 100 mg iv made me feel horrible. I've kept the benadryl at 50 as it helps with the side effects of the prednisone.
I am fine w/Tylenol (as long as it is dye-free) so this part is a non-issue. I have never had solu-medrol (or any form of Prednisone and already suspect that I will not do well w/it). The Infusion Center where I get my IVIG every 3 wks is actually a cancer center and they do RTX very frequently. Their protocol is to give IV Benadryl & Tylenol as pre-meds and only give solu-medrol if someone has a reaction. This would actually be my preference although I am not sure if my doctors will want me to have the solu-medrol as a pre-med. If they do, then I will definitely follow their advice and do the solu-medrol (at lowest dose possible).
We'll start with the benadryl. If you've never had iv benadryl, but a pill makes you feel loopy you're in for quite a ride.
I actually have had IV Benadryl when I was in the hospital in summer 2015 (was having anaphylaxis to all food but water at that time due to MCAS). I tolerated the IV Benadryl (25 mg) with no issues until after I d/c'd from hospital and was having IM Benadryl shots and pills and it all accumulated over a 2 week period and I had a horrible toxicity reaction. I have never taken Benadryl in any form since and switched to Atarax. But am certain that I could handle 25 mg of IV Benadryl as a pre-med (instead of the Atarax) for the RTX.
Prednisone - 100 mg iv at once is a big dose.
I am hoping to avoid Prednisone but if I do take the solu-medrol, am fairly certain my dose would not be that high.
The wierdest side effect is my Calcium level drops
That is interesting and do they measure calcium levels after RTX? Is this common? Do you have any of the VGCC Calcium Channel Autoantibodies?
I am amazed that you did not have any allergic reaction and this is actually my biggest fear.
I've done LOTS of immune suppressants in the last 5 years.
I have never taken any immune suppressants (unless you count Cortef?).
Took a court battle of epic proportions - 9 months. They cover 100 % now. So grateful. 13K/ infusion.
I am also prepared for a battle of epic proportions but my doctor feels confident that we will get insurance to cover it. I have great faith in him, so am waiting until after we speak next week to figure out the plan, but I think we are requesting it for May b/c we are still using my current IVIG Auth.
I take it for multiple autoimmune diseases, but I don't have RA so the insurance company was not going to give it to me. However, I've had CFS for far longer than I've had the autoimmune stuff. The CFS doc I see still believes I have CFS/ME despite the 'diagnosis of exclusion' criteria.
I do not have RA either. I am kind of the opposite of you and my doctor (and myself) no longer believe that I have ME/CFS vs. multiple autoimmune antibodies/diseases that are all driven by the B-Cells causing all kinds of problems w/my muscle strength, breathing, POTS, etc.
Most people who are on the autoimmune side take RTX with another immune suppressant or two.
In my case, I will just be doing RTX alone (unless by a true miracle I will be allowed to extend my IVIG Auth as well) and then we will overlap the two.
here is not a whole lot of detailed patient accounts unless it's on chemo forums and many of those are RCHOP which adds a whole 'nother level to the RTX.
Many patients at my infusion center do CHOP or RCHOP for their chemo and they seem to do quite well with it (during the infusion I mean... I have no idea what happens once they go home).
So the benadryl and medrol are mixed with negligible ml's of water, but the RTX is in a full liter.
Did you literally mean water or saline? Sorry, just wanted to clarify! Also, does the RTX have to be in a full liter? My mast cell doctor (who would be referring me to the infusion center w/my main doctor) would never allow me to do a full liter that quickly b/c I am a pulmonary edema risk. I've talked to many people in two other groups I belong to (for my calcium autoantibody and for LEMS) and there seems to be great variety in the amount of saline given w/RTX. One person said he had the RTX in 250 ml (1/4 liter) of saline which would be do-able for me even w/the IV Benadryl 30 min prior.
No. Here is why. What would I do if I tested positive? Not take it? That wasn't an option.
That is how I feel at this point. Wikipedia (I know not the greatest source LOL) says that 70-90% of the adult population will have antibodies to the JC virus like I do. It seems the risk for PML is rare and is higher if you are immuno-compromised with HIV (which I'm not) or taking other immuno-suppressants (which I don't). I plan to ask my doctor if the JC Virus is only measured by antibodies or some other way? I had the "Stratify" test and was positive at 2.46 (above 0.4 is positive) but am not sure how high it can go? I think it just means that I can mount an IgG antibody response but am not sure that it actually makes me a higher risk for PML. But I could be wrong and plan to learn more about this.
Skip all antihistamines a week prior to dose
This would be impossible for me b/c I have MCAS. I am in remission (with my MCAS meds) and even though the amount that I take now compared to 2015 is incredibly & significantly lower, I still require some. If I were to stop them, the chances of an allergic reaction would be much higher and not something I would ever risk.
Keep the benadryl rate slow. I've seen the gamut in other patients from an iv push to my 30 minute slow trickle.
Mine would definitely be a 30 minute infusion and this is the policy of my infusion center. I have never seen them do an IV push on any patient w/Benadryl.
LOL, yes, but I've lived in a few western States so it's more like western US rep'n.
Am not in Utah but am with you guys in the western US!
It's given over 5 hours if that helps. You need the volume
I am in the weird freak group who does not need the volume. Actually to clarify, I do need the volume but my body cannot handle it and I get third spacing and increased risk for pulmonary edema. My MCAS doc said that fluid loading (with saline or even drinking huge amounts of water) would be dangerous for me even though I have POTS and dysautonomia. He said 6-8 cups of fluid per day is the right amount for me even when I have IVIG and he has turned out to be right.
The breathing thing - one of my horrors of uncontrolled immune system is never ending pleurisy and costcochondritis.
I have never had pleurisy and costcochondritis but I have weak breathing muscles and also have POTS. I struggle with breathing when standing up but am totally normal breathing lying down & sitting. Are you able to pass a spirometry or PFT test? If not, do you have pulmonary restriction? I have not tested this since 2015 and will be trying again in April or May to see if I've had any improvements from IVIG. My overall muscle strength is vastly better so am curious if my breathing tests have improved (although I still doubt that I could pass one).
Thank you again for sharing your experience w/me about RTX. Am hoping this helps others down the line...