Visit to rheumatology today...I wasn't expecting change of meds!

[Moomin8]

Hi Peeps 😊

I had a rheumatology visit today; I actually saw my rheumatologist - and not my clinical nurse - who I've seen for a good couple of years!

I expected to go along and apply for funding for my 2nd round of Rituximab...nope, that didn't happen! My ESR and CRP were so raised, that she decided to switch meds again! Now, my clinical nurse (lovely lady) told me that Rituximab might not kick in until the 2nd for 4rd round...so much for trying that!

I was a little dumbstruck when she said that I will have to have an appointment with the TNF nurse, at which we have to apply for Tocilizumab, before starting it! That appointment is 22nd December. Consequently, if they allow me to start it, it won't be much before the end of January! Meanwhile, I continue with 22.5mg Metoject and Sulfasalazine 😖I don't understand why she didn't apply for it there and then, like normal?

A bit miffed at the moment to be honest.

Anyone on Tocilizumab? Apparently, it will be weekly injections.

UPDATE 13/11/21

After contacting my lovely clinical nurse to question having to wait for another appointment - 22nd December - to apply for Tocilizumab, she applied for it! Within a couple of days, the funding went through and it's now full steam ahead 🥳 I'm still waiting for the paperwork in the post to sign, scan and email back to her. Apparently, the Tocilizumab is being delivered by Lloyds Pharmacy - Clinical Homecare and should be here within a couple of weeks - they'll contact me to arrange the delivery. I've not had a delivery from them before; I've had two other suppliers . I'm supposed to have my first injection with a nurse present from Lloyds, but my Clinical Nurse said they're really short of staff, due to Covid, so I've chosen to simply go ahead with it myself; I'll make sure I'm not on my own though.

So, so pleased and relieved. Just hope it does its magic, sooner rather than later, without too many unwanted surprises 🤞

[Lolabridge]

Sorry to hear RTX isn’t working for you. I’m being taken off it too and switched to an anti-TNF as my immunity levels are so low.I wonder whether there’s more to this?

It’s a blow that you need to wait so long to start a new drug but they will want to be sure the RTX is out of your system.

Good luck!

[Moomin8 in reply to Lolabridge]

Thanks for your reply. Do you know which anti TNF you'll have? I had Rituximab in May, so yes - it will be out of my system 🤞

[Lolabridge in reply to Moomin8]

It will be Adalimumab I think.

[Moomin8 in reply to Lolabridge]

I've had Cimzia and Idacio. Cimzia worked well for me for a couple of years, but Idacio didn't touch the sides. I asked my rheumatologist why she thinks Tocilizumab will be good for me, she didn't really have an answer.

[Neonkittie17 in reply to Lolabridge]

Definitely it can lower your immune but usually over several years. My igG and M are low and causing some awful symptoms for 3 years now. I’m changing from Rtx too. However, as it works so well to keep RA away for me it will still be working for some time and I can’t start another med till my B cells are back. Probably early next year earliest. That would be 9 months since last Rtx.

[Moomin8 in reply to Neonkittie17]

I hope you can start as soon as possible on your new med; it's awful that you have to wait so long. Luckily for me, my Bcells are okay at the moment.

[Neonkittie17 in reply to Moomin8]

It actually means my RA is kept at bay as long as Rtx continues to keep it that way and deplete B cells, but it’s not good for needing to change to something else. I always knew it would be a long wait to change given my B cells don’t repopulate for such a long time, but the problem is my immune is getting hammered and I need the B cells back so I can have my vaccine(s).

[Moomin8 in reply to Neonkittie17]

It's a catch 22 for us sometimes isn't it? Dammed if you you; dammed if you don't 🤷🏻‍♀️What are you having, in the meantime, to help?

[Neonkittie17 in reply to Moomin8]

Rituximab is working very well for the RA and also as has done so symptoms are not currently present. It’s not possible to stay on it though with low Ig’s and lack of vaccine efficacy. I hope Tocilizimab works for you when you do start it. hope

[Neonkittie17]

Maybe she hasn’t applied as yet as she knows Rtx will still be in your system due some time as such?

[Moomin8 in reply to Neonkittie17]

Thanks for your reply. I understand what you're saying, of course. However, it's so frustrating. I've been flaring for over two years now - it's waring me down. However, I'm still working 🤷🏻‍♀️

[ruth_p]

I’m on tocilizumab and I’ve found it to be brilliant. 6 years in and it’s still working. I don’t really understand the wait though. Good luck 🤞

[Moomin8 in reply to ruth_p]

Thanks for sharing your success with me - it's very reassuring to know that it has worked so well for you. I'm on Metoject (Mtx) and Sulfasalazine too, and have been pretty much since the beginning of my journey in 2015. I'm presuming that I'll carry on with those too 🤷🏻‍♀️

[ruth_p in reply to Moomin8]

I still take mtx but came off leflunomide after the tocilizumab worked so well. I’m not convinced the mtx does anything. I hope it works for you as well as it has for me.

[Moomin8 in reply to ruth_p]

I'm looking at side effects, like we do, and it talks a lot about weight gain. Have you found this to be the case? I've worked so hard to lose weight.

[ruth_p in reply to Moomin8]

Unfortunately yes, but if I am good with my food I can keep it in check.

[Moomin8 in reply to ruth_p]

Well done you 👏🏻 😇

[Marionfromhappydays]

I bet that was quite a shock, Rituximab does sound like it's a kick ass drug they must monitor its effects closely.

Guess it doesn't help being in a pandemic and on such a long lasting drug,hope the weekly tnf does the job but still a shock to be told you are changing.

[Moomin8 in reply to Marionfromhappydays]

It completely threw me, to be honest. I think I would have questioned why I'm having to wait to see a TNF nurse...because I've always applied for funding at my rheumatology appointments previously. However, I'm just reading about Tocilizumab, and it's not a TNF drug - how does that work?

[Runrig01]

I suspect she is delaying as Rituximab has a long half life of 3.5 weeks, which means it’s in your system for around 16 weeks. However the immune system takes between 9–12 months to recover. I understand your frustration though, I would feel the same desperate to try the next biologic and hopefully get your life back. Hope you get a good result with the anti tnf. Fingers crossed for you 🤞

[Moomin8 in reply to Runrig01]

Thanks for your reply 🙂 To be honest, it will be 8-9 months since my first round of Rituximab before I hopefully get Tocilizumab. My immune system (IG blood results) haven't budged since having Rituximab! My immune system must be made of iron! 🤣 This would be great news if it wasn't constantly attacking my joints 😭

[Ozzy]

I have been on it for 5 years with no problems

[Moomin8 in reply to Ozzy]

Fantastic to hear that you're doing so well on Tocilizumab 🙂Could I ask please - what have you tried before, and what other meds are you on?

[Ozzy in reply to Moomin8]

No other meds. I have been on 10 different types including 2 biologics ,rituximab which did not work at all and humira which worked for 3 years

[Moomin8 in reply to Ozzy]

Thanks 😊 Could I ask - have you found any problems with weight gain?

[Ozzy in reply to Moomin8]

No as I have been able to exercise walking, swimming and going out on my ebike. Before it took all my time to just get out of bed

[Moomin8 in reply to Ozzy]

Great news! What a recovery!

[Green230461]

Hope you get sorted out soon. I am on the sister drug Baricitinib and it has been great 😊

[Moomin8 in reply to Green230461]

That's great news! Please excuse my ignorance, but what is a 'sister' drug? Is it in the same family? I think Tocilizumab is an anti-TNF?

[Green230461]

My rheummy said it was two sides to the jam inhibitors- one was better with people who could cope with methotrexate which was toccilizumab and baricitinib was proving better for people like me who could not take methotrexate well.

[Moomin8]

Update: I left a message for my clinical nurse about why do I have to wait until December to apply for Tocilizumab? I had a call back today! Apparently, my rheumatologist doesn't apply for my meds - it's the clinical nurse! So, my clinical nurse looked to see if my rheumatologist recorded my DAS score and whether was over 5.1 - it was a lot higher! Consequently, she can apply once I've signed a form - giving my consent. She's going to send that to me, I'll send it back so that she can expedite my application!

Sometimes, we just have to question...actually, we have to do that a lot!

She suggested keeping the 22nd December appointment, until we get confirmation of a positive application. Definitely a positive call 📞

[Neonkittie17 in reply to Moomin8]

👏🏻👏🏻👏🏻