Rituximab Update

[SALI]

Had first Rituximab infusion yesterday and all good. Blood pressure high on arrival but came down OK. No allergic reactions. This morning I have woken to greatly reduced swelling, no aches, pains or sore joints . Completely on a high. Hope it lasts. Next infusion 8th July. Problem now is getting through to Rheumatoid department to book a follow-up appointment 🙄Thanks to everyone for your help and support. Wishing everyone a Good day xx

[Amnesiac3637]

Brilliant! Hope your high lasts for a very long time!

[wishbone]

That's good to hear, hope it works well for you.

My rheumy has booked me in to start Rituximab just this morning. Not sure how long it will be before I start taking it, but will have to stop my current med 2 weeks before I start Rtx so am looking at around a month or so. Fingers crossed I don't have any adverse reactions...........

[SALI in reply to wishbone]

All the best for you.

[Neonkittie17 in reply to wishbone]

Very unlikely Wish, to have an allergic reaction as they give you an antihistamine tablet and a 20 min IV steroid infusion before Rtx itself. As you’ve been having chest scans etc., you won’t need to do that as they do usually ask for a current chest xray. Don’t think Rtx requires TB screening as some biologics do but I can’t be entirely sure. They’d have told you, so it looks like you’ll be all ready to start soon. 🙏

[wishbone in reply to Neonkittie17]

Thanks Nk, I didn't want to go on Rtx due to the risk of infections as you know, but both of the rheumatologists I've seen think I really need to start doing something because my lungs are showing serious deterioration according to a recent LFT...and I certainly ain't going to argue with that! Although my RA has, thankfully, improved some since starting Mtx (inflammation levels show a decent drop in a recent blood test) they think more needs to be done and it's worth taking the risk of going on Rtx because my UTIs have become fewer in recent years....fingers xxxx for that.

The number of appointments I've had over past weeks and will have in the next few weeks is mind boggling, at least to me it is. Had a bit of an odd one yesterday with a phonecall asking if I could manage to attend the chest clinic on July 12th to discuss medication for the fibrosis, which seems a bit strange when I already have an appointment with a chest consultant 3 days later. 🤔 It looks like they want to discuss going on Nintendanib to try and at least slow down the scarring. The sooner the better the way I'm feeling!

No peace for the wicked as they say!...

[Neonkittie17 in reply to wishbone]

Hi Wish, just make sure you visit the bathroom whilst you’re having the infusion then you’ll not encourage any UTIs that way. The nurse will unplug the infusion stand and it still will be on battery so you can walk with your stand. Make sure you don’t dehydrate and ensure plenty to drink during your visit. You’ll be looked after well. I always was. Rtx could make a huge difference to your RA so think of all the positives. Good luck. 😸NK

[wishbone in reply to Neonkittie17]

Just had a phonecall off rheumy to ask if I'm avaiable later today for a phonecall from a nurse to do with me starting Rtx.

[Lolabridge in reply to wishbone]

Hooray! Hope you can get started on RTX quickly and that it works well for you - it did for me! 🤞🏻

[wishbone in reply to Lolabridge]

Not long come off the phone after the nurse explained what's involved if I agree to start Rtx. I say 'if' as I'm still undecided what to do for the best. If it was just my RA was the problem then I'd sign on the dotted line, but my main concern is slowing the fibrosis, something I'm not sure Rtx can do after talking with the nurse. My understanding was that the increased inflammation from poorly controlled RA was why the fibrosis has kicked off again but when the nurse told me that my CRP levels were only 14 in a blood test I had 2 weeks ago then I'm not so sure RA is the culprit. It's possible higher inflammation levels prior to starting Mtx a month or more ago could have restarted the fibrosis but I need to find out more before I agree to go on Rtx.

The thing is as I'm prone to UTIs, then unlike the JAK inhibitors, which have a low half-life and leave the body within a week should I get an infection, there's no shifting Rtx from the body for months or even longer as you know. Obviously not good for someone like me.

I've been through this sort of thing years ago when I made the mistake of going on Enbrel when I had a bladder condition. Within a few months I was laid up in hospital with septic arthritis in my hip, which the consultant at the time blamed on Enbrel for allowing easy access to my bloodstream by a bug from a recent UTI. He told me stop taking it.

The difference back then was I never had lung disease so no concerns in that department. I really need to find out more, the thing is if the Rtx ain't going to help the fibrosis then why increase my chances of getting a second life threatening condition on top of the fibrosis. I'd be quite willing to risk an infection if I knew there was a reasonable chance of Rtx helping the fibrosis but as yet I'm not conviced. The nurse said she would check with the rheumatologist and get back to me.

Talk about being between a rock and a hard place! 🙄

Apologies for the long post.

[Lolabridge in reply to wishbone]

It's difficult for you to know what to do and I can only suggest you talk it through with your consultant. I did get a couple of UTIs when on Rituximab and needed Nitrofurantoin to clear them. But no new lung problems developed and my lungs improved after the problems MTX seemed to have had caused. Tough decision for you wish and hope whatever you decide works for you. Fingers crossed 🤞

[wishbone in reply to Lolabridge]

That's good to hear, especially your UTIs clearing with Nitro. I had 2 UTIs back last year and both needed only one week's course of nitro to clear. Compare that with how stubborn my UTIs were to clear, that's if they ever did, back when I was taking enbrel and Mtx with me ending up in hospital on two occasions. It seems the likely reason for that was due to me taking Baricitinib for the last few years, which leaves the body a few days after stopping it as you know. Also good that your lung problem has improved after going on Rtx. Both chest and rheumy consultants told me it is RA that causes PF and not Mtx as previously thought by some. Mtx can still cause lung problems though I don't know what they are. I'm swayed toward going on Rtx at the minute but still need convincing.

Thanks for replying Lola.

[Neonkittie17 in reply to wishbone]

It’s all happening! 👍🏻

[wishbone in reply to Neonkittie17]

It might be me doing my overthinking thing, but I'm not happy starting Rtx...not yet anyway. I was under the impression that reducing my inflammation by way of Rtx could help my PF, but when the Rtx nurse informed me that my CRP was a very decent 14 then perhaps inflammation has not affected the PF and it's progressing for whatever reason? The CT scan I had a few weeks back was for my chest consultant to find out if my increased breathlessness was due to changing meds or the PF progressing...if the latter then they would consider putting me Nintendanib to try and slow the PF. Following a phonecall from the chest clinic last last week asking to see me about medication for the PF, it seems very likely that my worsening breathlessness is down to increased PF scarring rather than a changing meds...well I know it is actually. If that's the case then why go on Rtx and bring the risk of serious infections into the mix!? Besides, just before I started Merhotrexate about 6 weeks ago my CRP was 64 according to the Rtx nurse, which fits as I have felt a graduall improvement in my RA over the past couple of weeks. My shoulders and arms are still not good but I prefer to live with that rather than go on Rtx and add a second life threatening condition into the mix. I have an appointment with the chest clinic to discuss the Nintendanib on July 12th and another with a chest consultant on the 15th where I hope to get some clarity on the situation before I do anything. If I did agree to starting Rtx then I would have been infused on July 22nd providing my blood results are ok.

What a bloody headfull!! 😧 and apologies for repeating things already said in my previous post.

[Neonkittie17 in reply to wishbone]

Yes it’s awful when your meds need changing/they aren’t working well enough or you can’t even get hold of them. 🤨 I’ve a migraine that’s lasted over two weeks now. Not a clue what’s happening re my med availability/arrangements.

I’m not sure why then they want to put you on Rtx if recently started Mtx or Rtx not going to improve your lungs situation? Too soon to see if Mtx doing anything anyhow. I’m always of the thinking that RA inflammation makes everything else play up. Once the lungs calm down the RA will, but it’s a vicious circle, Can’t really comment on your CRP as mine’s been zero or under 5 since 2014 as a result of Rtx getting rid of all inflammation as it does that for the most part of people. Then my current med is holding the RA too. Is there anything else on offer other than Rtx? I’d ask your chest consultant re Rtx too and say you’re worried it might add in more unwanted issues. You’re right you need to have your appointments to discuss your lungs first. 🙏

[wishbone in reply to Neonkittie17]

My wife has the occasional migraine which can cause her to be sick, though thankfully they only last a day or two. Hope your's stops soon.

No mention of any other meds, both rheumatologists seem intent on me starting Rtx. Had another phonecall yesterday from the respiratory nurse who previously phoned about starting Nintendanib. Not good news, she has gone and got covid so has to postpone my appointment on July 13th to something like a week later. However, I can have a phone appointment on the 5th if I want and this is what I'll do as time is priority. Worse news is that it will take approx 6 weeks for the private supplier to deliver the Nintendanib and that's on top of the time it takes to get the green light from my chest consulant, so we could be talking about 8 weeks here. If my lungs continue to detetiorate at the same rate as they have over the past 2 months then it won't be worth bothering...and I'm not being overly dramatic here. Now I know that then I might as well go ahead with Rtx in the hope that it will lower my inflammation and potentally help calm down my lungs. We shall see.......................

As for CRP readings, when you consider that mine have been over 100 on times then 14, though not ideal, is pretty darn good don't you think. 🙂

Thanks Nk.

[Neonkittie17 in reply to wishbone]

Yes the CRP is what is good for you and what is your norm. They judged the Rtx as having worked if your CRP went down all the way, but if it reduced it right down to your low norm then it would be equivalent I’d guess.

Migraine was simply from being left dangling re the Abatacept pens shortage for 15 days but now I’ve been contacted by the rheumy sec and will be receiving syringes of Abatacept until pens available again later in the year. I don’t get headaches unless it’s tension, and rarely.

I think you have to say your concerns to the chest consultant and see if anything can be made sooner re the Nintendimab. Yes, I’d take the phone consultation from the respiratory nurse and say again your comcerns, and that’s all you can keep saying. See if there is any way or can be made sooner to start Nintendimab. 🙏

[wishbone in reply to Neonkittie17]

I did tell the Nintendanib nurse about my concerns, she said she'll have a word with the consultant but not to build up my hopes. Also I need to make sure I have everything to hand such as blood test forms and the like though I dount that will speed things up much.

[Neonkittie17 in reply to wishbone]

Sorry, I changed your med name! (Nintendanib, isn’t it?) If it’s just not possible to get the paperwork and approval sooner then I don’t know how it can get any faster 🤨 and you’re doing all that’s right. You’ve said your concerns and hopefully if at all possible the consultant will expedite. An up to date blood test is always essential for a new med, so yes I’d get that done asap. It’s exhausting starting new meds or waiting for approval, and I know how that goes after the last two weeks of tension and frustration trying to get someone to speak to me re my own med. I’ve been left dangling, waiting for new meds in the past for months. 🤨 How are you managing with your lungs in the interim? I hope you’re stable and steady soon. I’m hoping this phone call with the chest nurse can help and tell her again how anxious the wait is making you and making your breathing worse. Good luck, Wish. 🙏

[wishbone in reply to Neonkittie17]

No problem.

I'm not very good at all and finding it increasingly difficult using the stairs, and though not gasping for air when I reach the bathroom, I do need a minute or two to get my breath back. Bending down to do something for more than a few seconds really tells on my breathing. Providing I take it slow, I can manage walking a hundred yards or so on flat ground but even then my breathing is laboured and there's little chance of me saying more than a line if a fellow walker asks me something. My RA doesn't help either as I need to put more effort into climbing stairs etc than someone with better controlled RA. If I tell you that my recent LFT showed just 47% oxygen retention then you can see that things are not good and I need to start Nintendanib pretty quick if my lungs continue to deteriotate anything like they have over the last few months.

[Neonkittie17 in reply to wishbone]

No. Wish, that is not a great oxygen retention and with that in mind and all you’ve said previously I hope they get the med through faster. So sorry and I do still feel that when RA is much better comtrolled then the lungs will improve too.

[wishbone in reply to Neonkittie17]

I think my chest consultant said my breathlessness should improve when my RA is better controlled. When the Rtx nurse phones again I'll agree to starting Rtx as I've nothing to lose by the seem of things. I've really had a rough time this past few months. The only time I get some real relief is for a few minutes when I wake up in the mornings but that soon comes to an end once I get up. It's been so painful trying to use my hands and arms and a struggle just to make myself a cup of tea. I'm pretty sure my grandfather had RA and can see now why he was always sat in his armchair when I visited as a kid. Not that I do that but it is tempting on times.

Anyway, all I can do now is hope the Rtx and Nintendanib can help me, but things do need to put a move on as you can tell. If my bloods are ok then I get infused in 3 weeks time. How long was it before Rtx started to work for you?

[Neonkittie17 in reply to wishbone]

It was around 8 weeks I noticed a marked improvement. It can be a bit sooner, it can be a bit later. You feel great relief after the infusion, re mobility and much less pain as they give the majority of people an IV steroid (lasts about half a hour) prior to the Rtx one. The IV steroid makes you feel great for a few days and then it wears off a bit and B cells are mostly depleted around after 72 hours from infusion, so you’ll feel tired. You feel tired anyhow now as it is from all the active RA. 😖

After 8 weeks my progress was on the up all the way. I’d got to a very sorry state too in the 12 months prior in 2013 when Enbrel worked like magic for 5 weeks then suddenly stopped and Humira did nothing. I was in bed mostly and hobbling out to the car for a lift, with the assistance of my husband, to essential places and appointments. Do keep an eye on your bloods/immunoglobulins. You are going to feel better soon, Wish. Hold that thought.

[wishbone in reply to Neonkittie17]

Rheumy gave me a prescription for 2 weeks at 10mg of prednisone then another 4 weeks, possibly longer, at 5mg. I begin the course as soon as I stop the Filogotinib, which will be 2 weeks before I start Rtx. I continue with the 20mg of Methotrexate.

Apparently the fibrosis can stabalise by itself, though you probably know this. It's happened before...let's hope it happens again.

Thanks for the Rtx education Nk and for the kind words.

[Neonkittie17 in reply to wishbone]

You’re welcome and I’m no expert but I did have Rtx for 8 years so learned a thing or two. I’m glad they are giving you a short course of oral pred to tide you over as I was about to say have you asked re that. I feel too once Rtx calms the RA right down (and it will) your fibrosis will calm too. All will calm. You’ve been suffering for too long with this crazy out of control spell. 🥲

[wishbone in reply to Neonkittie17]

As I said, what made me reluctant to start Rtx was not so much the infection risk, which I was willing to take, but it was when the nurse told me that my CRP was down to 14. I thought that was pretty good compared with past results so why chance going on a strong immune suppressant when my inflammation level ain't too bad at all, at least until I saw yours I thought it wasn't. So I'm ready to start Rtx providing my bloods are ok, which I should find out within the next few days.......

[Neonkittie17 in reply to wishbone]

Hi Wish, The 14 is good for YOU though considering the obvious level of RA and other inflammation you’ve had/have. My mentioning CRP under 5 is what the rheumy nurse said about Rtx the first time we met .. that Rtx does this for the most part of patients in reducing their CRP to that. That’s what they tend to see she said. Meaning it works for many. I’d had a CRP of around 25-35 which was high for me prior to Rtx. Yet for some that would be their low. It’s not just the CRP number they were/are looking at with you re RA though, and with you as whether to start Rtx as, as you say you’ve got the pulmonary function to address/improve.

It can be so hard to make the decision and you are the one making it at the end of the day, with guidance/recommendation from your team. I would not want to try influence anyone about any med choice. I just say it has been a good one for me or it’s caused problems if anyone asks or had the very same as I had, but I’d not want to influence. Someone’s else’s side effects/reactions won’t be yours. (I’m very allergic to an aspirin!) You could talk any remaining things not covered enough to your chest nurse on your imminent call. I hope you feel more reassurance after you speak to the nurse later in the week. I’d not compare your 14 to my 5 as I don’t have the level of chest issues and my issues are not structural but trying to hold off bronchitis. Good luck, Wish. NK😸

[wishbone in reply to Neonkittie17]

Thanks for explaining the CRP thing. I appreciate that we are all different on how we react to drugs and understand what you say about not influencing someone.

Thanks Nk, much appreciated.

[Neonkittie17 in reply to wishbone]

Ahh Wish, I just want you to feel free of the pain and get the RA and lungs in a good place. I feel your team will be giving you good care and very regular monitoring. They sound very thorough.

[wishbone in reply to Neonkittie17]

Thank's Nk. Agree with you about the care I'll be getting... the consultants and nurses I've spoke with have been so kind and caring. Think I mentioned in a previous thread how pleased I was with both consultants in the joint chest & rheumy appointment. They asked me if I would prefer to see other consultants closer to home or stick with them, which is what I chose to do. My only disappointment is the wait for the Nintendanib but that's nothing to do with my team. I could have started Rtx on the 15th instead of the 22nd but I have an appointment with a chest consultant on that day.

Will post an update when there's something worth reporting.

[Neonkittie17 in reply to wishbone]

Yes it makes it much easier if your rheumy team care. 🩷

[wishbone in reply to Neonkittie17]

Telling me!...see my post above.

[Neonkittie17]

The no aches or pains or swelling and sore joints will be due to the IV steroid they give you just prior to the Rtx infusion itself. It’s a nice feeling not to be hurting when you’ve been suffering. I hope Rtx starts to work its magic for you soon. 🩷🙏

[liveinwoods]

So glad the Rituxin worked for you. What a blessing!