My Rituximab experience with RA and ME

[Nielk]

I was due for my next set of Rituximab infusions two weeks ago. It took some time to get approval again from my insurance carrier. I had appointments all set up for Jan. 22 and Feb 4th, I took preliminary bloodtests.

My doctor called me that she had to cancel the infusions based on the results of my bloodwork. My B-cells are still non-existent. I was surprised to hear that. I guess that would have been good news if I would have seen improvements from the Rituximab. I would have seen continued improvement in my condition.

Unfortunately, that is not the case. I have seen no improvement in my ME symptoms as well as my RA ones. I am back at square one.

Since no treatment so far has worked for my RA, my Rheumatologist said that she wants to discuss my case and what the next step should be with her colleagues and she will get back to me in a few days

 

[Sasha]

Really sorry to hear that, @Nielk.

 

[Roy S]

Well, that sucks. (that's my way of commiserating)
Hang in there.

 

[Freddy]

That really sucks. Thanks for sharing.
Hopefully your rheumatologist will come up with a plan B.

 

[SDSue]

@Nielk I'm so sorry to hear this. Many of us were hopeful with and for you.

 

[lansbergen]

@Jonathan Edwards

Does the not improvement of RA and ME symptoms after 6 months tell you anything?

 

[Hanna]

Sorry @Nielk to read the bad news. You have been so clever to go through all this so far !

 

[Bob]

Really sorry to hear this, @Nielk. Thanks so much for sharing.

 

[Sushi]

@Nielk
So sorry to hear this, but thanks very much for the update. I hope "the next plan" will bring some benefit.

Sushi

 

[Jonathan Edwards]

I am sorry to hear you have not had any benefit, too. The majority of people get benefit but not all. The continuing absence of B cells at 7 months is fairly standard - they can come back any time after 6 months. It is not a problem them still being low but there would be little point in having another rituximab infusion now if they are. If they stay low for another few months you may still start to get some benefit but it is relatively unlikely if nothing has happened so far. The only other positive thing to say is that after a course of rituximab, even if it does not seem to do much, RA can become responsive to drugs that have not worked before, or lost their effect over time. It may not have been a total waste of time.

 

[Nielk]

Thank you @jJonathan Edwards. You have given me some hope.

 

[Kati]

the B-cells remains at 0 for a long time indeed, there is nothing to worry about this @Nielk they will come back up in their own time. Sorry it didn't work for you and I am hoping you can have a decent planB.

 

[NK17]

Dear @Nielk I add myself the the chorus of pwME that are so sorry for this lost battle with Rituxan, but I'm also here to try to give you hope and a virtual hand to hold.
Let's pick up the pieces and move on to a plan B, hopefully next treatment will work.

 

[Gingergrrl]

@Nielk I wish I could add something that hasn't already been said but am truly sorry that the Rituxan didn't work out as hoped and send my best wishes for Plan B- both for your ME and RA.

 

[Nielk]

My doctor decided to try another RA medicine that works on a different pathway - Orencia. Orencia is often used when other RA drugs have failed. It works on a different pathway. I can't say that I understand it but, I'm glad to have another avenue to consider.

This is either given with weekly injections or monthly infusions. I have chosen the weekly shots because I can just do that from home. I am as always, first awaiting insurance approval and will of course, report back if I feel any improvement...or not.

In addition, someone has pointed out to me the following B-cell immunodeficiency study
http://www.ncbi.nlm.nih.gov/pubmed/16889122

I wonder if @Jonathan Edwards or someone else is familiar with this?

 

[Jonathan Edwards]

My doctor decided to try another RA medicine that works on a different pathway - Orencia. Orencia is often used when other RA drugs have failed. It works on a different pathway. I can't say that I understand it but, I'm glad to have another avenue to consider.

This is either given with weekly injections or monthly infusions. I have chosen the weekly shots because I can just do that from home. I am as always, first awaiting insurance approval and will of course, report back if I feel any improvement...or not.

In addition, someone has pointed out to me the following B-cell immunodeficiency study
http://www.ncbi.nlm.nih.gov/pubmed/16889122

I wonder if @Jonathan Edwards or someone else is familiar with this?

Yes, that sounds a reasonable choice. It works a completely different way and is as good as the other options. It might even help the ME!

 

[Helen]

Dear @Nielk,
I do hope that you will get a treatment that works for you, both for RA and hopefully also for ME.
Thank you for posting the very interesting study below. Best of luck!

In addition, someone has pointed out to me the following B-cell immunodeficiency study
http://www.ncbi.nlm.nih.gov/pubmed/16889122

Edit: free article
http://www.ncf-net.org/pdf/UckunCFSCD19.pdf

 

[Jonathan Edwards]

I missed the reference to the B cell measurements. To be honest nobody else has found this sort of result with B cells and also the measurements used are inappropriate so one cannot really make much of it. I don't think this gives any indication of 'B cell immunodeficiency' or has anything to do with rituximab.

 

[Nielk]

I missed the reference to the B cell measurements. To be honest nobody else has found this sort of result with B cells and also the measurements used are inappropriate so one cannot really make much of it. I don't think this gives any indication of 'B cell immunodeficiency' or has anything to do with rituximab.

I'm not sure what you mean by: "the measurements used are inappropriate so one cannot really make much of it."?

 

[Jonathan Edwards]

I'm not sure what you mean by: "the measurements used are inappropriate so one cannot really make much of it."?

Well, the more I look at this the more weird it seems. 90% were women for some reason. The majority (55%) had another major illness, including lupus or RA. That makes it pretty difficult to know the relevance to CFS per se. The interpretation of EBV serology is pretty impossible in the presence of RA or SLE with rheumatoid factors and polyclonal B cell activation around so I don't think the case for 'reactivation' is good. They seem to regard all results as 'inappropriate responses to EBV' whether up or down. You do not normally put this sort of judgment into a results section!

The B cell data in particular are very confusing. Firstly there are no controls!. Secondly they give percentages referable to both total mononuclear cells and lymphoid cells without indicating how they identify lymphoid cells and without any absolute figures (which is what we actually want to know). CD19+IgM+ is an unusual combination of markers to look at - I have not met anyone using it for 'mature B cells' in recent years. And the figures given do not look particularly abnormal (no normal ranges are given). If they used a wide panel of antibodies (as they say) then we need detailed calculations of the probabilities of odd results turning up by chance (which is almost guaranteed if you do not restrict your primary endpoints in advance and with lots of markers there are hundreds of combinations to pick).

Basically professional immunology papers do not look like this. Especially as they fit into the same paper an uncontrolled trial of folinic acid with no methodology other than saying the patients were 'interviewed' and claim that the results have something to do with the B cells.

The overall impression is that the authors decided they would find evidence of immunodeficiency and EBV reactivation in advance and chose the results that fitted that best. Everybody in science does that to begin with but the peer review system was designed to make people become more careful. Unfortunately peer review does not really exist any more!