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i know that the Rituxin wipes out your B cells and the C19 and C20 are lab tests that measure if your B cells are returning - I believe they are antigens attached to B cells if I understand correctly.
I completed my Rituxin Dec 18th and my CD19 and CD20 are 0 still at about 9 months out.
Wondering what other folks have experienced?
I had my first round of 4 infusions in May 2014, and the peripheral B-cells (CD19, 20) showed up at 1% in February 2015. After one booster infusion in March 2015, B-cells were at 0 until late January 2016, and I had a second booster infusion in Feb 2016. The time period generally varies between 6 and 10 months across patients.
Thanks Max! That is interesting for sure. I read that folks sometimes have repeat doses in 4 to 6 months and I would think that is because their B cells are back - I would not think that a doc would repeat the dose if the B cells were still surpressed? I also wonder if you can have GPA sx if your B cells are 0? So much more to understand about this. Like all of us I want less meds in my system but I do not want to have GPA take over.
What kinds of meds are most pure-GPA people on? MTX/RTX and pred? Anything else? I guess I've never asked that question before.Quote:
Like all of us I want less meds in my system but I do not want to have GPA take over.
My daily wegs meds are bactrim 3x weekly and 5 mg pred daily. I'm jumping through the insurance hoops for a course of rtx now.
I'm guessing that is fairly representative for what most people do. I'm on a few more than that. I'm getting so tired of managing and taking meds.... Its getting very annoying, but it has to be a lifelong vocation now.Quote:
My daily wegs meds are bactrim 3x weekly and 5 mg pred daily.
As Dr Spiera reminds me every time I see him, maintenance medication with RTX is an art, not yet a science. There have been studies showing its effectiveness under a once-every-6 month regimen. In some cases (esp. with patients who have had multiple relapses, yet do not take care of themselves, skip appointments etc.) he prefers to follow the 6-month regimen. In my case he'd rather follow a less-is-more strategy. He even suggested giving me a half-dose next time and after that just careful watching.Quote:
Originally Posted by Middlesista
I believe that you are correct that in the absence of B-cells the disease is dormant; the ANCA antibodies are produced from B-cells so assuming they're all gone there can't be any renewed disease activity. I don't understand all the details though, esp. whether all the B-cells are really gone, or just enough remain that cannot be measured.
Vdub - exactly for GPA now MTX and prednisone. First round of RTX completed in Dec and I am so hoping (like many/all) that I do not need this heavy hitter again.
Pete - do they use RTX for maintanance for you?Quote:
Originally Posted by Pete
thanks again Max - I am all about less is best if able. Is it possible to have B cells present but since there is no antigen/ antibiotic reaction happening the CD19 and 20 are 0 since they measure the antigen on the B cell and not the B cell in ofitself if I am understanding correctly ?Quote:
Originally Posted by MaxD
I think my slowly elevating CRP is more related to the supra suppression of my inflammatory markers by the high doses of steroids I was on and with the decrease in steroids my CRP began to rise. I feel I have "normally" elevated inflammatory markers since they have been elevated for decades with no sign of disease. In fact the second opinion specialist I saw at MGH mentioned that inflammatory markers might not be the best indicator for me and an ANCA and sx would be more optimal and I had this conversation with my RA. So we r going to go down on Prednisone and up another 2.5 mg of MTX for now and will see if any changes.
i am a bit concerned about what might happen when B cells start to repopulate and it makes me think that when my prednisone was increased earlier they should not have been since no Bcells were present so my sx were not related to a flare but rather residual issues with my vision if the no antigen = no B cells is accurate Seems there has to be another method to measure B cells - I do not know, the more I read the more questions I have and the more I realize how little I understand
just found this: A contrasting situation exists for patients receiving rituximab, ofatumumab, and other anti-CD20 monoclonal antibodies that are used to treat certain cancers, autoimmune diseases, or for B-cell depletion to prevent humoral rejection in positive crossmatch renal transplantation. These agents block available CD20-binding sites and, therefore, the antibody used for this flow cytometric assay cannot recognize the CD20 molecule on B cells. The concomitant use of the CD19 marker provides information on the extent of B-cell depletion when using this particular treatment strategy.
Yes. Jumping thru the insurance hoops now. Last August, I got 4x1 gram.Quote:
Originally Posted by Middlesista
Does your doc check your B Cells prior?Quote:
Originally Posted by Pete
Insurance is such a huge player -
I just realized something. If B cells are continually killed off with ritux when they start to return, are we in a constant state of immunesuppression? I kind of thought the immunosuppression was going to be temporary? No? [emoji21]
I do know MGH is doing a trial where they increase the ritux infusion rate and decrease the prednisone. (I couldn't participate because the ER had already started me on a pred taper (50mg-10mg in ten days) immediately back-to-back with MGH starting me on 60 pred. BUT if you get into the trial all meds are free. Something to try possibly if ins doesn't want to cover ritux. Maybe you could do it long distance Pete?
Maxd and middlesista - I read both that B cells come back at 4 months and I read 6 months. ??? I guess it's not exact. MGH informed me that I'm to have my 3rd ritux infusion in mid Dec. (3.5 mos after 2nd)
Also I was wondering... (Because I read and heard that B cells have memory) that if you wipe them out long enough they may forget all together about attacking (via GPA.)
But that makes me wonder, will they forget how to fight all the colds and vaccines I previously had? I had chicken pox as a kid (and shingles as an adult) will my body forget it's immune to chicken pox?
Max d, I was told that the reason there are multiple rounds of ritux (1 week or 2 weeks apart) is because there are B cells that "hide" in the lymph nodes the first go-round and so the next infusion gets them.
Vdub - As for GPA meds I'm on 60 pred and had 2 ritux infusions (but I don't know dosage). Plus I'm on Prilosec, bactrim, Ambien, calcium, and Vit D (because I'm on prednisone and ritux).
Because of my sinus drainage (allergies or GPA?) I'm on Zyrtec, Astelin and Nasonex. Because of my lungs (asthma or GPA?) I'm on Flovent and albuterol as needed.
I also take a multi vitamin and probiotic.
Great thread!! [emoji106]
Very interesting thread, the last two years now I have taken one large dosage RTX, every 6mo, 7 mgs preds daily, bacterium MWF for maintenance. I get monthly labs in which fluctuate on B cell count from month to month. It is really hard to really know where you are at when taking preds everyday. Two years ago I also took Cellcept while doing the RTX every 6 mo. The doctor and I agreed to test taking me off of the Cellcept and just using RTX. She said at that time that a study in Europe had suggested that, too much tx could prove to be doing the opposite and could be harmful. So in other words less is sometimes more.
I am trying to get a more local Rheumy to oversee my RTX and before they would do it they tested my IgG, it was to low for them to give me the tx. This was really confusing to me because, it would be lower because of being on preds for so long. I have been trying to understand all this B cell stuff for 6 yrs. tomorrow and still don't know what's going on. I do know that I feel a lot better than I did 6yrs ago!
150mg Aszan (Azathioprine/Imuran)(2x75mg daily)Quote:
Originally Posted by vdub
(2) 1000mg RTX every 6 months (2 weeks apart)
Hey Gab, I hate to tell you, you'll probably be on them, in one form or another, forever. I was told that I can count on being immune suppressed for the rest of my life because of our wonderful/awful disease.Quote:
Originally Posted by Gab122
<sigh>
Thx for answering Mike. Tho I wish your answer was different. Sigh.
Me too, me too. <sigh>Quote:
Originally Posted by Gab122
Gab: My doctors monitor my immunoglobulin levels (IgG, IgA, IgM) every three months - so far my levels have been around the low side of normal so they are not concerned. But I'm not currently on prednisone or any other medications while in remission (other than the RTX infusion last Feb). My docs have told me to live a normal life, and I haven't thought twice (but did ask at first) about going to the movies, traveling to Asia and Europe, etc. I'm not sure if I'll be on medication after completing two years in remission next January.
Losing B-cells doesn't destroy ones immunity - T-cells (which are not affected by RTX but are by chemotherapeutic drugs) continue the job of fighting viruses etc. Regarding your earlier message, I think that by killing off a few generations of B-cells over two years with RTX, the hope is that the future generations of B-cells may not automatically produce ANCA antibodies. Of course, this is speculative and might vary from person to person. In the meantime, as long as docs are monitoring me, I wouldn't be overly concerned about the immunosuppression effects of RTX alone.
Thats great news Max! [emoji106][emoji4]Quote:
Originally Posted by MaxD
A couple follow up questions:
So if I'm on 60 mg prednisone daily and just had 2 infusions of ritux in August, does that make me currently immunesuppressed (A little? A lot?).
I guess I didn't think the prednisone was part of immune suppression. I thought it was an anti-inflammatory drug (same thing?)
Please educate me if I'm wrong. I thought the Rituxan stopped the disease activity from continuing and the prednisone cleaned up the mess from the previous disease activity (like shrinking granulomas) ?
So I must still have my T cells? Not fully immune suppressed? Do the T cells house the info of my previous vaccines? Or was that on B cells?
How does the immunoglobulin levels play into all this? Do they ever test your ANCA levels too (I know that's a debated activity indicator)
Lastly, being in remission, how do you feel? Do you feel like you did before GPA? If you've mentioned how you feel in other posts forgive me for forgetting... I'm the new kid on the block and mix up everyone's stories somewhat.
[emoji57]
Gab
I hope to be able to get onto RTX one day, but until then, keep up the great job with the info in this thread.
Regards Woz.....
Gab,Quote:
Originally Posted by Gab122
Prednisone (high-dose and/or long-term) is immunosuppressive, inhibiting the actions of both B- and T-cells. While on prednisone one has to be careful about viral, bacterial and fungal infections.
Rituxan does not kill T-cells. They target the B-cells that produce antibodies, including ANCA, and bring the disease in remission. The strong anti-inflammatory power of prednisone immediately relieves symptoms and fends off further harm to the body, but does not stop the disease. The downsides of prednisone are the various side-effects which I'm sure your doc must have told you about - there are so many threads on this forum as well. Mercifully, not everyone will experience all the side-effects - so don't let all you read scare you.
I do get tested for PR3 levels. The immunoglobulin levels indicate how well my system is able to fend off viruses etc.
It took me a good 6 months after stopping prednisone to get back to normal. As I was tapering down on prednisone, I had a hard time once I got down to 7.5mg. Mostly aches and pains and stiffness, especially in the mornings and after sitting too long. Moving around helped. Nothing debilitating though. AFter 6 months I started exercising regularly and have kept that up. So now, aside from the tinnitus and eustachian tube dysfunction, I feel better than before the GPA symptoms started.
Hope this is helpful. Having been through this recently, I know how worrisome every stage of diagnosis and treatment is. When my doc said I should see her every two months instead of one, I felt like I was being abandoned. So even recovery brings new worries. But, really, you will get through this and you will feel good again - just take it easy and be kind to yourself! Good luck.
Hi Gabby,
You are immunosuppressed. To what degree is essentially unknown. Probably enough to keep the GPA symptoms in check.
Prednisone is the anti-inflammatory part of the treatment. When you're having major symptoms, you need more cortisol to tone down the inflammation.
As the immunosuppressant does its work, the symptoms and inflammation decrease. You should be able to start tapering off the pred sometime in the next few weeks.
When tapering off pred, do it slowly. Your body has stopped making cortisol, and the slow taper gives the adrenal glands a chance to return to their normal function. Sometimes, people can't get off pred altogether. Once I go below 3-4 mg/day, I start having symptoms again. I have been on 5 mg/day for over two years with no issues.
I'm in remission. I feel the same as I did before I got sick. I do a lot of what I did before. I retired about 9 months before I got sick, so I no longer have the stressors of working.
Thank you Max and Pete for all the info! I find I "thirst" to hear other patients' experiences with this disease tho I know everyone is different.
I will taper slowly and will start when Dr. advises me too. Hopefully I will get instructions to start and how to proceed with the taper at my sept 9 appt (in one week!)
I'm glad you are both doing well! I'm feeling pretty good (much better than before Treatment started!) and know I'll continue to improve.
Some great thoughts and questions Gab! I also thought the B cell suppresion was of a shorter duration but it seems to vary and I never knew about the shy B cells hiding in the lymph nodes - sneaky devils. I am also interested to learn about the B cell memory and how they play a role?Quote:
Originally Posted by Gab122
Max and Pete - you are both a wealth of information - thanks so much for sharing your knowledge and experience!!
Sister, my WG dr. doesnt use C19 & C29 as an indication to do or not to do another rtx. They can be zero even during a flare !
He looks at the general picture. Mostly symptoms.
He is not working with "the less is better" attitude that you mentioned above but with the opoosite one: he prefers to attack the wg beast as strongly as possible and not to wait for the beast to raise its head. He says that if we keep the beast sleeping long enough, it is possible that the immune system will do "reset" and will forget to attack itself, which means long remission or even healing.
He is sending me to rtx every 6 months. 2000mg. When I was late in 6 weeks to go for it, I was out of remission.
This is a great thread ! So from what these post say,being on higher doses of pred and having rituxan at the same time would probably be the easiest to then get an infection. Being that both B and T cells are depleted? One allowing you to get the virus, the other allowing it to settle into an infection? maybe thats too simple. I came on here today because this is exactly where im at and i was looking for this answer. I am on 20 mg of pred(coming down from 40) and i had rituxan 2 and 4 weeks ago. I have a virus that my children have. Stuffy nose n cough. So how long do i wait to see if my body fights it? or do i need to be right on it with dr?
Actually blessed, I think you (and I) still have out T cells. But we are immunesuppressed right now due to high pred and ritux. I hope you and the kids feel better soon!! Rest up and chicken soup! 😉
Alysia- I have read that other folks also have RTX on a regular basis to prevent any reoccurence and with the thought of forcing a reset of the B cells with a long enough suppression.Quote:
Originally Posted by Alysia
Watch for a temp - they don't always treat viruses with antibiotics but u have to be vigilant and let doc know if sx cont. Hydrate and eat healthyQuote:
Originally Posted by im so blessed
Lke Gab mentioned I believe you still have T cells. Not sure how long after doses of Rituxin before our B cells are depleted - I thought I read somewhere it could take a few months but I am not certain and with everything - we all respond a bit differently it seems.
Alysia, my message to you that you couldn't read was a link to this thread because I thought you would find it interesting [emoji4]. I see you found it anyway! [emoji106]
My Flow Cytometry report with B cell results just arrived in my MGH online acct. Here's a screen grab. Interestingly it says the % of T cells may increase when B cells decrease.
Thought I'd share.
edit: I took out blurry attachment -
next post has clear attachment.
That pic in the last post looked blurry despite picking "best quality" - this should look better...http://uploads.tapatalk-cdn.com/2016...8dc5e36d57.jpg
This should be clearer.
Gab
Ok from what I just read online...
The cd3, cd4, cd8 are all T Cells.
The cd19, cd20 are B cells.
Sound right?
Interesting Gab - my lab does not do the total breakdown like this. I am wondering how that data is used for the T cells?
That's right. Check out: https://en.wikipedia.org/wiki/Cluste...ifferentiationQuote:
Originally Posted by Gab122
Middlesista - Hmmm. I have no idea. This is my first time recv this info. I'll ask about it at my RA follow up on friday.Quote:
Originally Posted by Middlesista
Max, thanks for interesting link! [emoji1360]
I was looking at the report and wondered about this paragraph:
"REFERENCE RANGE: Adult (age 18 and up).
Reference: Clinical Immunology and Immunopathology 70,152, 1994. Immunology
Today 13,215,1992."
What does 7,0,152 and 13,215 reference I wonder. Is it my numbers or general population numbers. Or something else all together?
Gab
OK. I'm ignorant on this. What is the C19 and C20 test? Blood test? Another name for something that appears in a CBC? Help please.
Hi Pete, From what I gather it's a test that checks your B cell levels. I don't think it's part of cbc or anything. Maybe it's used to determine if the immunosuppressant meds are working correctly or determine when you need your next round of Rituxan or other immunosuppressant.Quote:
Originally Posted by Pete
There are tests for the T cells, and other blood components as well. The cd3, cd4, cd8 are T cell indicators.
If you are on something other than Rituxan there may be different cd tests they would run.
Hope that helps!
Gab: The numbers likely refer to the volume and page numbers and year of publication in the two journals.
Don't worry about all the CD markers - the only ones relevant to us are CD19 and 20.
Middlesista, I just realized I never responded to your question about B cell memory. Unfortunately I don't know more than that I heard they have a memory. If I find out more I'll message you. In the meantime maybe someone else on the forum has an answer.Quote:
Originally Posted by Middlesista
Than you Gab - I have been poking around for awhile but could not find anything concrete or at a level I could understand. :biggrin1:Quote:
Originally Posted by Gab122
Just revisiting this thread as I found myself requiring another go at Rituxin. I had initial doses in Winter of 2015 when I was diagnosed and was put on MTX for maintenance along with varying doses of Prednisone few months later. Got down to 3 mg of Prednisone. New lung lesion turned up and PR3 came back positive after being negative for a few years. Found we can not go by my inflammatory markers as they are chronically elevated. First time I had Rituxin I was pretty sick so felt lousy anyway this time I was not as ill but am finding I am pretty tired after this 4th infusion and have a wicked dry mouth. The increased prednisone is making blood sugars crazy but at least I am functioning and working - need that medical insurance. RA is talking about using RTX as maintenance which I resisted before but I am reading more and more about this - wanting the B cells to develop amnesia sounds like a good thing.
Just had long talk with my Dr. about that today. He says they don't use those numbers to see where you are at. He goes by ANCA, CRP and sed rate. Just had mine done and all are fine. Been 7 months since last Rituxin infusion. I have decided to go with out until I have bad labs, or start a flare. He has several patients that are doing that. One has been 38 years. Diagnosed at 19. Anyway he did do the labs on my B cells but results are not back yet. Will try and let you know what they show when they come back. He said CD20 is what wiped out.
Sorry just read this after posting. I was diagnose in 2014 after lungs and kidneys were involved. Did the whole prednisone, plasma exchange and 4 weeks of Rituxin infusion 1 a week. I got off the prednisone in about 6 months of taper. It was a horrible 6 months. I have been using just Rituxin for maintenance since with no side effects or trouble with infusions. I hate pills so wouldn't do it any other way. Prednisone causes more side effects than the RTX. Good luck!!!
thanks Loisann - will be having C19/20 done next month.Quote:
Originally Posted by loisann11
As I mentioned earlier in this thread I was of the “less is best” mind set and did not want the every 6 month infusion so we tried MTX however last year ended up with new lung lesion and had to go through induction therapy again. However in my case the “ less is best” mentality left me with more damage done - lesson learned. I finished the second Rituxin series in July and ended up back in Hospital 2 weeks later for an atypical lung issue. In fact one of the tentative diagnosises was pneumonitis due to the Rituxn! They did a bronch and felt that it was doubtful that this was the case based on the findings. Thankfully recovered from that and they felt it would be safe to go ahead with my maintenance dose (time will tells how that works out since I just had that Rituxin dose today)
My CD20/CD19 were still showing up in my blood work 3 months after that second infusion series although in very low numbers, repeat blood work done this month demonstrated these levels were 0. Because of my earlier experience I agreed to go ahead with the scheduled infusion. Lots of pros and cons of the every 6 month infusion vs the watch labs and sx and do not use Rituxin for maintenance. Confusing and frustrating and I know we are all different in our journey with GPA. I guess what I learned was as soon as my PR3 became positive and that lung lesion showed up I should have pursued Rituxan and not been reluctant. Foolish of me -
@Middlesista
Unfortunately, experience can be a tough teacher. Hope you continue to improve.
Thanks Pete- hope all is well with you and yours.
It would be easy if everything about this disease was in black and white, but its not unfortunately, I have been medication free for 10 months, luckily for me I have had monthly tests, and noticed that my PR3 was on the rise, went back on aza and have brought the numbers back down a bit, but still a way to go before the level is back to where it was, but I tried!! I hope you get back to where you were before soon, and keep up the info on this thread, as it is very informative.
Best of luck.
Regards Woz...
Thanks Woz. I thought it was odd that when my PR 3 went up the second time the ANCA was negative - did that happen to you or was your ANCA positive also? Have you ever had to use Rituxin?
I have always had a positive ANCA, and my PR3 reading was 4, anything under 2 was negative, the scale in Australia is a little different that everywhere else, and I cant go on Rituxin untill I flare, or pay a lot for it!!!!
I have read where folks say the manufacturer has some sort of program to help folks with payment of the Rituxin
Well I certainly hope you don’t flare! At one point my insurance wanted me to switch from Rituxin to Cytoxan but the Hospital I was getting the Rituxin infusion and my RA said nope and they have been paying for it thank goodness.
If the ANCA is positive my understanding is that the disease could well be causing damage? Isn’t that reason enough for them to cover the cost. I read what Rituxin costs to make and the markup to the people who need the med and it is ridiculous. Like a few hundred to manufacture with the end cost to the consumer over ten thousand - this was in the US I believe.
In Australia, if you are diagnosed with wegs, they treat you with Rituxin for most cases, this practice has been around for a year or so , i think it costs around $30 a treatment, and this is available to anyone, so my rheumy informed me, but for someone who has it already, they have to have a flare to be eligible to receive Rituxin at this price, I was close to being eligible as my Pr3 jumped to 51, from 4, but my inflammation markers were normal, and if there is no inflammation, no flare (so I'm to believe). My ruemy retired in December, she was just fantastic, and without her help, I wouldn't have the health I have now, hopefully my new rheumy can keep me on the right track.
Thanks for sharing and caring, keep fighting and most of all keep writing!
Regards Woz...
@MiddlesistaQuote:
Originally Posted by Middlesista
I had my 19th rtx infusion today. We moved it up a few weeks (usually do it in late October) because I had a small flare last month (clobbered it with a week each of 20,15,10,5 mg) pred blast.
Prior to that, Dr VF ordered a B-cell test to see where I was. My c19 was 0.1 and 2 is the bottom of the normal range. The test was taken about 10 months after last year's rtx. Ratio of c19 to c20 was 0. She was pleased. I continue to do pretty well. Hope things are going ok for you.
Sorry you had to go through this tough time, sister. Thank God you are doing better.
When my pr3 is up, I know it means that wg is active. It can be up even when C-anca is negative. And I had a flare with only pr3 positive and C-anca negstive.
We need to look at the symptoms and not only at the numbers.
I wonder about the negative effects of rtx on the lungs. I had a disturbing dry coughing for more then a year which disapeared about 1-2 months after my last rtx. My last rtx was only 1000mg for the first time. Since 2013 it was 2000mg every 6 months exactly.
So maybe less rtx is better for the lungs ?
On the other side, it seems that 1000mg is not enough to hold the wg for me, my next rtx should be at the end of October and my joints are killing me for more then a month now.