Morning ! so. 4 weeks in After Rituximab infusion. Still so so stiff and sore in the mornings. Am on another ‘rescue course’ of steroids to last another 4 weeks as the nurse has said they allow upto 12 weeks for it to start working.
Anyone else had experience of how long it takes to start working ..?
Every time I google it it only says how long the actual process of infusion takes. Do hope it starts working soon as not sure what the alternative will be.. 😏. TTx
Hello,
I’m in a similar boat. It was my 4th loading dose (4th week in) of Cosentyx on Monday night and still nothing has happened. Stiffness, joint pain and swelling continues. On Monday it was so awful that I was asked to see my rheumatology nurse who injected me with steroids. I felt great yesterday, so good that I went to tai chi last night, but this euphoria was short lived as this morning both knees are like bowling balls and my right ankle the size of a large grapefruit. So my plans for today are scuppered.
I’m sure it’s going to be different for all of us as to how long biologics take to get working, but it would be great to know how long it took others to get kick started.
I hope your day improves.
Nicole x
Hi tess , it can take the 8-12 particularly after first ever round, i find it works quicker now after several rounds . Good luck 🌸
I found the third round had a much better response. Retux is my lifeline.
Thank you x
Afraid it isn't a quick fix type of drug The Nurse is correct by saying 12 weeks. I had my third annual fix last November and that one was the best by far.
Yes I realise this but when you want it to work you want it to work! My worry is the damage that maybe being done whilst waiting!
You can't spend your time getting upset if wanting the drug to work immediately isn't what happens.
4 weeks is too short a time to get so stressed......RTX can take a good 3 months to give relief.
So do try to be patient...believe me after 20 years of the ups & downs of RA I do know that is not easy,but I am convinced the more you stress that a drug isn't working the less likely it will work quickly.
Try to relax, & tell yourself it will start working.......I really hope it does kick in soon.
.
Oh dear. I think you have all read my post wrongly!
I was just wondering how long ... that’s all. I’m probably the most tolerant uncomplaining person around. Seriously.
If anything is stressing me it’s your comments!!
I’m a GP’s daughter and sister .. so know all about these drugs and the good they do.
Was on embrel for 8 years. Was fantastic. Maybe Time to get off this site me thinks.
Oops
Maybe that is where you are going wrong...GP's are notorious for not understanding the ins & outs of rheumatology drugs.
We are not suggestin you are complaining......you are just anxious to find a drug that works.
My GP had no idea how frequently RTX is administered & asked me if I had injections every month!l
Rheumatology is a much neglected speciality & your best friend is your Rheumy nurse .....they see people with RA for longer consults than the Rheumatologist & really see the effects, or lack of, of all the drugs we take....& they understand how the drugs might work on each individual.
So hang on in there & look forward to RTX working its magic....I have been on it since 2016 & as I remember it did take about 12 weeks for me to really feel that it was going to work for me.
Hi Tess...you still on the site 😊. I’ve been wondering how you got on? I really hope you’ve had some benefit from Rituximab? Xx
Hiya. Just seen this! I hope you are keeping well..I have backed off the site recently yes. But thank you for your little note ..
I have to say I THINK the Rituximab has begun working. The 12 week period of waiting is up next Wednesday.
My consultant has said because the RA is pretty aggressive it could take another Rituximab round, of which I may have in December. They gave me two emergency batches of steroids over the last 2 months, as I was in agony waiting for the new drug to work and to tide me over, which I had to taper off slowly.
I’m now down to 2.5 mg steroid a day (from 20mg!) and I think all is becoming good. I still have naproxen (not everyday) if things are seizing up but generally no big flares...so...Rituximab is working !!! Yay!!( let’s not speak too soon) and thanks so much for asking..
..hopefully this gives hope to anyone about to embark or ‘waiting’ for the new drug to work, but still in pain. Hang on in there, and don’t be afraid to get help from your medical gang to help you get through the worst of the waiting time... TTx
Hi Tess...that’s really good to hear I’m so pleased for you that you think the Rituximab is starting to work 😊. I’m due to have my 4th cycle next week..the first one took about 16 weeks to kick and then I had about a months relief but the second one kicked in a lot quicker and I had nearly 9 months feeling fairly normal apart from the damage I already had, my third one lasted nearly a year with no extra steroids needed 🙏 I hope you continue to improve...one word of advice although your medical team may be different, but mine leave it until I feel I need it again and then it can take some time to get booked in again so I’m a bit more on the ball with it now. A lady who works with my husband has had a few rituximabs and she has about 18 months between infusions but everyone is different but I think the more you have the more benefit you get...so here’s hoping! Good luck and keep us updated 😊 x
That’s all very positive and thanks for the tips. 👍😅 🤗...Good to know about the booking in bit. I will definitely keep on the ball about making that appointment ASAP after it starts wearing off.
My consultant also said she’s known it to last 3 years in some patients. But it’s rare and a year 18 months or so is more average.
Do hope it keeps working for you and that other people on here get to read this thread if they’re concerned about embarking on Rituximab.
TTx
When you feel really ill and you are in pain you do anything to stop it , waiting for that is hard but you will get there Tess . My thoughts are with you , please let us know how you get on , if you are worried phone the rheumatology Nurse, i have found their advice very helpful . Best wishes
It could also be that you maybe didn't explain yourself clearly. Can't blame everyone for not reading your post properly. Had you said you were a gp's daughter and sister, the advice may have been to seek it closer to home? Perhaps the family gp's could ask the rheumatology department on your behalf. Everyone on this site tries very hard to support each other and to understand other's situations. Be fair!
Hi Tessthomy, I have had three rounds of Rituxan thus far. It has not worked, or at least I am not sure 🤔 That May sound odd , so I will explain.
My CRP , inflammation went down before I started this drug and has not yet returned. So it maybe keeping it down but not sure if that is drug or my body.
Do not hesitate to ask as many questions as you like. I also feel every time I comment I get an onslaught of comments, not always positive. There are many who do help a great deal. Take everything with a grain of salt ! Always listen to your doctors and yourself. No one knows your body in quite the same way as you do. Surround yourself with positive people and energy. The key to my survival has been to develop and maintain a great sense of humour. Hang in there !
Hi there .. thank you SO MUCH. for your normal and positive reply.
So Interesting to hear about your experience..could it be a bit of both the drug and your body doing a great job at keeping it all at bay? So it sounds like it is working either way as I’m guessing you feel better? After 3 rounds it surely must be doing something. These drugs are amazing and work in many different ways. Fingers crossed for it to continue.
Thank you for your further nice comments. I realise that this site can be extremely helpful to get ‘the other side’ of the story .. Ie not from medics, (which is normally where the first line of advice is) but from real people with real symptoms... and this is why I asked the question, in order to get others stories.
I do normally get lovely comments back like yourself and also I’ve found some posts really funny and light hearted which are always the best ones.
In fact most of the comments from my post have been fine and pretty comforting (to be ‘fair’), but there seem to be one who two who want to be more negative towards my post , but as with most things like this, I take it all in my stride. I’m definitely not getting upset or stressed because the drug is not working immediately!
I’m more than positive this drug will be my next miracle one and excited and fortunate to be able to get on with my life because of it.
I didn’t think I would sleep last night because I felt cross from some of some of the negative comments that made me feel bad for even asking the question .. but I actually slept like a top.. ready to face the day again! So obviously not too stressed and bothered by it .. good to wake up to your lovely response, I have to say!
Yes. Humour and laughter’s the best medicine in the world .. I wholeheartedly agree! 🤪 I will carry on in my own wonky way 🤣
Glad your feeling so much better - Sounds like you are. It's a wonderful site with people who understand, support and care. Pleased you decided to stay 
Prednisolone - do you need to shield for a short dose (4-5 weeks?)
Post knee replacement (no 4 I think)
Methotrexate 4 months on
Fascinating Radio 4 programme.
