Ritiximab - evaluation after first few months

[cathie]

I'm wondering how the rheumy judges whether they think this is working - do they order a blood test before you see them? All I have at the moment is an appointment in May.

C

[Hobbits]

Hi Cath, I cant comment on Ritiximab per sae, but I do get monthly blood monitoring done. I usually have a Rheumy appt every four months (3x a year) to review how I'm doing. The blood tests show whether my inflammation numbers are up or down, or if they have stayed the same, and whether I am having any liver damage.. I'm thinking this is important to judge whether a drug is working or not or at least maintaining effectively.

I know people who are stable and controlled go a lot less, maybe once a year, but my Rheumy is still figuring out a medication course for me that works.

I'm not sure how often your blood tests are done, but I am thinking it will help your Rheumy decide whether the Ritiximab has started working, hopefully you get more than one blood test, one before Ritiximab and at least one after to see if there is any change.

[cathie in reply to Hobbits]

Thanks. I used to have regular blood tests but on ritixumab it seems to be slightly different, which is why I'm uncertain! Sometimes I think its working, times like today Im achy and tired. But not as much as before!

C

[Hidden]

I am now on Rituximab, when you see your Rheumy in May they will go by your blood results and do a DAS and then (mine did) requested a seperate immunoglobulin test to check for the protein in your blood to confirm if you are ready for your next top up infusion, I was told it can't be done before 6 months due to the protein.

[farm123]

For me it was clear it was not working. I would assume a blood test and DAS score would be used to compare to pre infusion score. Farm

[cathie]

Thanks Farm. I think its working but a little bit of doubt when I overdo things. But I have been doing things I've never done for a year - like make cheese scones!

[Hidden in reply to cathie]

Mmm cheese scones. I love those. I can no longer bake anything. Don't think I'd ever be considered for Ritux, as MTX and Leflunomide work well for me. Glad it's working for you Cathie.

[cathie in reply to Hidden]

I think if mtx and leflunomide work well its good to stay with them. My (ex) rheumy thought infliximab was no longer working and mtx was affecting my liver. So I've been on a long and painful journey to find what next. Ritixumab seems to be the best so far, but I'm not out of the woods yet!

[NeonkittyUK in reply to cathie]

Would say it is working Cathie! I felt noticeable things about 8 weeks .. I reached up into a cupboard for something and had not been able to do this for years, and could undo jars and turn handles ... and chop veggies ... but as I said before when chatting to you I had had both knees injected two weeks after my first duo of Rituxi so a bit hard to fathom it out. Was told after six months I would start to build muscle back and that was true ... happened about Jan. Now feel maybe Rituxi is starting to wear off a little in my little fingers, thumb and hip but have overdone it big time this last couple of months ... so going to alert them to that but have gone almost a year since my first duo. 1 and 15 April. See the Rheumy in routine 3 month clinic mid April. Have possibly had a flare with all I have been doing or aggravated OA damaged areas which normally don't bother me too much.

After my first duo of infusions .. I had FBC and B cells on the day of each infusion then full blood count tests after three months including ESR/CRP and it was obvious my joints were not inflamed or swollen. My ankles and knees had dramatically gone down and movement better. I also had my B cells tested. Same blood tests were repeated after 6 months in October and then was told B cell ones not needed again .. just the ESR/CRP etc., 3 monthly and a full physical examination of all joints. After the initial 3 months my ESR was down from 85 to 18 and CRP from 40's to under 5. I don't know about you but I no longer have the elecric shock flashes everywhere and I only have a Fentanyl patch for the oseto damage pain which I feel I can reduce the dose on. No need for any anti inflams since April 2014 and only occasionally Paracetamol for foot/ankle pain (feet need orthotics.) Hope this helps and your results are good when you go in May. Keep up the baking! Glad you can do more. Hugs. NK x

[cathie in reply to NeonkittyUK]

Thanks. I'm on week 8 and not feeling good at all. Maybe I've overdone it so must keep hoping xx

[NeonkittyUK in reply to cathie]

Don't give up hope Cathie and yes I feel maybe you have overdone it as you are able to do a bit more and have done. I felt week 8/9 was my turning point but it was gradual rather than the sudden ta-dah overnight improvement I got with Enbrel (just shame Enbrel only lasted 5 weeks ) for me. It was each week after week 8/9 I was noticing more I could do things with Rituximab and a more gentle improvement but what was more noticeable than anything was that I had not got that horrible constant joint flashing pain. The strength will come more for you when you can build muscle again. I feel these next few weeks before your rheumy appointment will show more progress for you so fingers crossed. Hope you have a restful but very Happy Easter, Cathie. Julie xx

[cathie in reply to NeonkittyUK]

Thanks. Have positive things today we're going to look at holiday home we're having built on west coast for problem free holidays

[NeonkittyUK in reply to cathie]

Was wondering if you're OK and Rituximab doing any more for you? Trouble wit keyboard so limited to type .. grr .. but just wondered if it making you feel more mobile and less pain? I pray it is! x

[Jora]

Well, in my experience ( though I'm not on Ritiximab; my menu is Enbrel, Methotrexate and Hydroxychloroquine) , there is three-way assessment:

1). Blood tests, which in my case are for weekly. I manipulated my dates so that I have a test 5-7 days before I see the consultant, but he also looks back over the last few months to see the pattern of ESR and CRP

2). Examination of the joints

In the past, when my feet were particularly painful, I had to insist that they were looked at, because, unfairly, they are excluded from the DAS.

3). My subjective Assessment. If he doesn't ask me for this, I still make sure he knows. I believe that this should include pain, stiffness, side effects and mood

I believe that these three make up the DAS score. This score is particularly relevant to those who aren't yet on Biologics. I think the score has to be 28 for permission to be granted. I'm sure someone will correct me if I am wrong!

Best

Jo

[cathie]

Yes, thanks very much. I'm trying to find out if there was something specific to Ritixumab

[Sailaway]

Cathie, The guidance on continuing Rituximab is that there should be an improvement in the DAS28 score of 1.2 points or more - that does at least mean that how you feel is taken into the equation along with the blood test result and activity in your joints. I hope that's helpful.

I was wondering if you had noticed any difference. Do you think it's working?

[cathie in reply to Sailaway]

I think there is some improvement. Not uniform - better later in the day and some days better than others. But I feel more upbeat and the inflammation and significantly, pain in my hands is better. SO hopefully.

Did you have a monthly blood test? there's no requirement I know of at the moment, we're going away for a couple of nights and then I'll see GP to check.

I hope you're OK too, Sailaway

[Sailaway in reply to cathie]

I hope the progress continues, Cathie.

I had an anaphylactic reaction during my first Rituximab, so no need for blood tests for me.

I'm still on abatacept, it makes a difference to my energy levels and probably in a limited way to my joints, but still waiting for significant improvement.

[cathie in reply to Sailaway]

How long have you been ono abatacept? Hope you get better results soon. I find that with ritixumab I have good days and not so good (so far) and that things get better after I've been active for a while. Still I think I'm well enough to contemplate two nights away to look at the wee house we're building (or rather, having built) in the Highlands. It will mean I can have problem free holidays again.

[Stynk]

Hi! I am still getting monthly blood test done. Like you have my appointment in May. Still not back to normal but able to do more. Sometimes this leads to pain and fatigue and swelling. But I figure it better than before so trying to learn a new balance. So glad you are able to do things again. Are you still got n MTX? I am so have continued to have the regular blood tests done.

[cathie]

Stynk. I had to come off mtx because of liver damage. It has been hard to find a good replacement. You seem to be at about the same stage as me with limited, but real improvement.