Rituximab Reviews: Hi All I hope you are well. I... - LUPUS UK

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Rituximab Reviews

EeBeee profile image
8 Replies

Hi All I hope you are well. I have my first Rituximab infusion booked for Wednesday but I’m still in two minds as to whether I want to go through with it or not. My consultant told me last week that I may still have to continue with my current medication even after the infusion which was not my initial understanding. I thought I would be able to eventually come off my medication. Can anyone who has had Rituximab please share your experience of the infusion and whether your medication has changed much since. I need to make a decision by the end of the day and just have no idea what to do. I’m trying not to stress but it’s stressing me out. I’m currently on 10mg prednisolone, 125mg azathioprine and 200mg hydroxychloroquine. Thank you so much!

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Lupiknits profile image
Lupiknits

I had my Rituximab infusions in July. Like you, I was apprehensive. It has had some positive results, and my follow up is this month. I continue to take hydroxy and mycophenolate.

At first I thought I would stop mycophenolate but Rituximab is a sort of top up, in layman’s terms. Here, my Rheumy had to show that mycophenolate wasn’t doing the job well enough before Rituximab could be considered ( it’s expensive)

My experience has been good x

EeBeee profile image
EeBeee in reply toLupiknits

Thanks for your reply! This is what I thought. I thought I’d be able to come off of everything after having it or at the very least the steroids and azathioprine but of course that would be too simple! Have you felt better since having it? Are you hoping to be able to reduce your dose at your follow up?

OldTed60 profile image
OldTed60 in reply toEeBeee

Sorry for replying too late when you wrote that you only had today to decide. I have a similar autoimmune profile to Lupiknits and have opted for Rituximab but had to wait until elective surgery for a stoma had taken place 3 months ago. I’d already decided against it 18 months ago so didn’t feel I could do same this time although I had major misgivings - mainly up do with being so immune-suppressed and being extra high risk for infections with a portacth (implant) and stoma. I finally went ahead about 4 weeks ago and both infusions went well. I have no idea if it will help yet as it takes around 6-8 weeks to feel the benefit I believe. My main reason for going ahead was that I’m not absorbing mycophenolate as well now, particularly with stoma and slow transit - but also with Gastroparesis and SIBO. There has been no mention so far of me stopping mycophenolate - which I have tolerated very well for 5 years now and has been a game changer for me. I guess we need to wait to see if Rituximab helps before deciding on whether I can switch. Maybe same for you?

EeBeee profile image
EeBeee in reply toOldTed60

Thank you for your reply! I’ve made the decision to go ahead with it but I’m always interested in hearing about other people’s experiences. Your case definitely sounds more complicated than mine but I do hope that Rituximab gives you some release, I think it’s normal to be weary of the unfamiliar but most of the experiences I’ve read about seem be positive. Good luck!

Mimi1900 profile image
Mimi1900

I haven’t had Rituximab but if you are even able to reduce your prednisolone below 5mg but hopefully even at least get off that I think the infusion would be worth it. The prednisolone is familiar so it seems safer but from all that my Rheumatologist (from a renown Lupus Clinic) the prednisone has so many significant health consequences all rheumatologist should aim to get their patients off it.

1. Indications for Use:

- Prednisolone is recommended for the management of conditions such as rheumatoid arthritis (RA), systemic lupus erythematosus (SLE), and other inflammatory diseases. EULAR guidelines suggest its use in both acute flares and chronic management when necessary.

2. Dosage and Tapering:

- EULAR emphasizes the importance of using the lowest effective dose of prednisolone to minimize side effects. Recommendations often include starting at a higher dose to control acute symptoms, followed by a gradual tapering to the lowest possible maintenance dose.

3. Duration of Treatment:

- Short-term use (e.g., for flares) is generally preferred, and long-term use should be carefully evaluated. Guidelines recommend reassessing the need for continued glucocorticoid therapy regularly to avoid prolonged exposure.

4. Monitoring for Side Effects:

- Patients on prednisolone should be monitored for potential side effects, including osteoporosis, hypertension, diabetes, and increased risk of infections. EULAR recommends preventive measures, such as calcium and vitamin D supplementation and regular screening for osteoporosis in long-term users.

5. Combination Therapy:

- EULAR recommends considering the use of prednisolone in combination with disease-modifying antirheumatic drugs (DMARDs) or biologics to enhance efficacy and potentially allow for lower doses of glucocorticoids.

6. Patient Involvement and Education:

- Patients should be educated about the potential side effects of prednisolone and the importance of adherence to prescribed dosages and follow-up appointments. Involving patients in decision-making can improve treatment outcomes.

7. Management of Flares:

- For patients experiencing disease flares, short courses of high-dose prednisolone may be used to quickly regain control of inflammation.

### Conclusion

EULAR recommendations emphasize a cautious and balanced approach to the use of prednisolone, highlighting the need for effective management of symptoms while minimizing the risk of adverse effects. It is essential for healthcare providers to tailor treatment plans to individual patients, considering their specific conditions and overall health status. Regular follow-up and monitoring are crucial to ensure the safe and effective use of glucocorticoids like prednisolone in rheumatologic conditions.

For the most current and detailed guidelines, healthcare professionals should refer to the latest published EULAR recommendations and evidence-based literature

EeBeee profile image
EeBeee in reply toMimi1900

Thank you so much for your reply Mimi! You’re so right, prednisolone is just familiar, not necessarily safer. That’s why I made the decision to go ahead. Everytime I try and drop below 10mg my symptoms creep back up. If I don’t try Rituximab I don’t know how I’ll get off of them. Fingers crossed it works, I’m sure like everyone else the goal is to go into remission and be off of everything one day! Thank you for all of the information it’s really given me confidence in my decision to go ahead.

Mimi1900 profile image
Mimi1900

wishing you the best!

EeBeee profile image
EeBeee in reply toMimi1900

Thank you!

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