Hi Everyone,
Due to pandemic I cannot travel hence not able to visit my Rheumatologist so, I started visiting a new doc and today she suggested a new treatment call RITUXIMAB. Has anyone done this treatment if yes, then please let me know how effective is it and any side effects.
I get joint pain, stiffness on & off + swelling of fingers every morning. Currently under HCQS & MMF.
Thank you
Have a great day all!
Hi Jkan I had the rituximab infusion back in July they hook you up on a drip for 6 hours and they check your temperature and blood pressure every hour or so.
The infusion is spaced out 2 weeks apart and it’s on a slow drip.
My first treatment was fine but the second treatment I had quite abit off side effects like I had the shakes, dizziness, swelling on my face, hands, feet and light headed and body aches.
I get joint pain, stiffness but my biggest problem is my fingers they are constantly swollen it’s like big fat sausages lol all the time and I can’t bend my fingers.
I’m on Hydroxychloroquine, MMF’s, prednisone, etc
If you do go for the infusion make sure you take something to read or watch something on your tablet or do what I did sleep they had recline so I fell asleep quite quickly. I hope it helps alittle.
Carmen x
Hi Carmen,
Thank you for your mgs.
Do you find this medication effective than other oral med?
How long days the side effect last?
Thank you
Jkan
Hi Carmen.Have you tried compression gloves ? I was referred to Occupational therapy by rheumatology and they gave me a pair x🧡x
Hi spanielmadlady
No I haven’t tried compression gloves yet I will mention this when occupational health comes to see me at home.
Thank you for recommend them to me I will try anything at the moment the rheumatology are trying to control my flares up but it keeps getting out of hand. 💜💜
You wear them at night to help with swelling.i dont get much swelling but they were given to me to try to help with pain.i do wear them through the day if my hands are bothering me.i also got given some thumb supports which are more for wearing when doing jobs.you can buy them but the fit needs to be right so I'd get your first pair from ot. xx
Thank you spanielmadlady xx
I hope things settle down for you soon carmen xxx
Fingers crossed I’m still learning along the way I’ve had it for 3 years and I had to give up my job as a bus driver cause I nearly crashed Into the tram I was still working through the pain so now I’m in the office so when I get flares up I’m not risking my life or my passengers. Medication are trial and error at the moment.
Thanks again Spanielmadlady xxx
Sorry to hear that you had to give up driving your bus . I cant work now as the lupus has affected my lungs and I worked in an high infection unit.it takes so much from us doesnt it.ive been Ill for 7 years in dec and on a treatment plan for 2 years.yes there is so much trial and error..wouldn't be so bad if things didnt take so long to work .I'm prescribed pregabalin for the pain in my hands and feet and I know the sun makes them worse too as does low b12 ....oh the Joy's xx
Don’t get me started on my lungs I’ve got my breathing test again I can’t get up my own stairs without collapsing and gasping for air. Everyone at work and my own family and friends said to me that I should give up working cause they see that I’m struggling but I’m not giving up without a fight I’m still young I’m only 33 years old when drivers at work say oh you look normal you don’t look ill I turn around and said well you don’t look stupid but you are lol and managers would always say just do your best and that’s good enough for me xx
Been there hun.ive had 6 bouts of pneumonia in 5 years all hospital admissions.told nothing was wrong but a second opinion diagnosed bronchiectasis and heart failure .i asked my chest specialist if the intrathorasic lupus had superseded the diagnosis of bronchiectasis and he said no ..I consider you to have both. Rheumatology dont look after my lungs now I see a chest specialist and have several drugs ,inhalers and nebulizers at home.love your reply tell them to google the spoon theory maybe that will shut them up.
I was due long function tests but not heard which I understand and I'm not in a hurry.ive done pulmonary rehab which is worthwhile...learning to breathe out slowly to bring your gasping under control is a good help .I can understand why you dont want to give up ...its 6 years since I lost mine but I know I physically couldn't do it 🤷♀️ xx
I ended up in hospital in January cause I had chest pains and it turn out I had pneumonia and they found a blood clot on the right side of my lungs etc I had a room to myself cause doctor said I can’t be on the ward with other patients and one nurse didn’t listen and she got into trouble when the doctor came to see me again so they had to find a room just for myself. I’ve got rheumatoid, Pulmonary embolus, and other health issue that comes with this condition I will give up when I know when my body tells me and I can’t do it anymore. Xx
Be kind to yourself my lovely . Good night 😴 xx
I will spanielmadlady. Yes goodnight 💜💜
I went through this treatment in the middle of lockdown as i was mid flow in a big flare up,between that and steriods iv improved slowly over the last 2months. I would defo give it a go x
Hi, I've had these infusions. It took around 5 months for me to see the benefits but it was worth it as it was positive. I don't remember havi g any side effects. It helped me with swelling (yep to sausage to her a!) Fatigue and brain fog. The effects wore off after about 5 months which took me to Feb this year. By the time they agreed on another infusion lockdown had started and my rheumy said he didn't want me to go back on an immunosupressant as C19 was too much of a risk. I'm waiting for the go ahead for my next one.
Good luck, I hope it works for you x
I am on this treatment now after 4 years off and on different medications that didn’t work and I was in a lot of pain. I then got a new consultant who recommended Rituximab. After all the medication that hadn’t worked and which takes so long to find out it doesn’t work, all I wanted at the time was to be out of pain, so I thought what the heck, one more medication right?
It was the best thing I could have done, from the first infusion it actually worked! Plus I didn’t have any side effects, apart from for a couple of days after the first part I am very tired and could sleep for England! It comes in 2 parts, 1st part is 6.5 hours, 2nd part is 4.5 hours. My consultant recommended that l have the treatment every 6 months but with the pandemic, it was a little late this time. I should have had it in early March but had it only in early August. This time it took about 2 weeks to kick in but it still worked!
My advice is just go for it, what have you got to lose? You are already in pain, nothing seemed to work. The worst that could happen is it doesn’t work and you get some side effects but the best thing is it could work and you’ll get your life back. That’s how I feel.
Good luck!
Hi Jkan, I started Rituximab in January 2019, I have an infusion every 6 months and it has worked really well for me. I had been on MMF and Hydroxychloriquine and prednisolone and Methotrexate before that, but I feel much better on the Rituximab infusion. Give it a go, you will never know until you try,and with auto immune/ connective tissue disease,it’s all about trying treatments that work for you.Good luck 🍀🤞😊
I have had the Rituximab infusion also, to try to bring my very low platelet count up.
Didn’t work for me unfortunately. Take a book with you it’s quite a long process. I had a slight reaction first time, tickle throat, sneezing etc., second time I was fine.
Hope it helps you.
Hi Jkan, I have had rituximab 3 times now, I'm in Perth Australia so not sure if you have the same infusion regimes, but I am given paracetamol, antihistamine and IV steroid before the infusion is started. I still start to feel sick about half way thru, and am given an anti nausea drug to stop this. Next time, Nov, they will include this in the pre infusion meds. The 2 infusions are 2 weeks apart. My last infusion we pushed out to 9 months but i had flared constantly since Feb, infusion was May/June. We have decided 6 months is my max between doses. Here we have to get authority from our federal health dept, approval can take over 6 weeks to get, so we plan ahead. I am usually nauseated for a few days after and feel even more fatigued than usual, but this passes. About 2 months later I notice an improvement, less pain, swelling, colour, change in my hands, arms, feet and legs. Face also less red. I also have a bit more "get up & go". Then at about 5 months I start to get a bit more pain, swelling etc but for those few months it is so worth it. I also have fewer flares in this time. I would give it a go, my side effects haven't been so severe that I would give it up, as I can't take HCQ or leflunomide it's tricky. I also take methotrexate, pred. And rivaroxaban. Good luck your new Dr sounds pretty clued in. Kat
Hi Kat136,
I have this sausage fingers throughout the day and I get numbness, pins and needles in hand while sleeping. If it is effective then I will surely want to give a try but my worry is with this pandemic, should I do it now or wait for few months.
Hi Jkan, my situation is a bit different because here in Perth we haven't suffered much as a result of the pandemic. I was still given mine, and in fact given how I have basically been in a flare since Feb we couldn't delay it much longer anyway. It was a bit of an experiment to see if we could push the doses further apart. Not a raging success as far as experiments go!! I have been told not to work with covid pts, I am a nurse and ICU/ED trained. But that as long as I was very careful, and didn't frequent crowded places, pubs etc I would be relatively safe. If would seem that actually having a suppressed immune system with severe covid could actually help. This is because the severely unwell's systems behave in a way like a massive over reaction of the immune system, called histamine storm. Hence why there was some thought of HCQ being of benefit. Obviously none of us want to risk it, but this has eased my anxiety a bit. It's going to be a long time before any of our questions about covid can be answered. I would have a good discussion with your team of Drs and decide how much your quality of life is affected by your current symptoms. If you think you can hang in there, delay it. If you are really tired of battling through every day, and the pain isn't well controlled, maybe go for it. Everything in medicine is a risk vs benefit balancing act. It's up to you where you are on the scale. Being under the current restrictions is difficult enough mentally without chronic pain making it much worse. Also your usual coping mechanisms might not be working as they usually do, if you can't get out to see support people, Drs, family etc so include that in your quality of life assessment. It's your entire life right now, so appraise it as objectively as you can and be honest with your team. Stress makes lupus worse for most of us, so let them know that if you feel it's having an impact. Big decisions, as there always is when facing treatment changes, take your time, be honest with your team and more importantly yourself. Good luck with it all. I'm sure you'll decide what you should do for you! 🥰
Hi Jkan. I have had lupus for 19 yrs and have tried so many treatments I have lost count. I have been getting rituximabp treatments every 6 months for the last 3 yrs and I feel as though I have got my life back at last. I also have RA and my hands and feet are always swollen and painful so the treatment hasn’t really helped there or maybe they could be a lot worse I don’t know but I’m so glad I got the opportunity to try plus I never had any side affects. But it does take a wee while to feel the benefits. Good luck anyway🤗
If benlysta dont work on me we are going to try this, it was an option as i have lung involvement, heard was better than benlysta on lungs.
Unfortunately for me Rituximab didnt work as it completed depleted my white cells and platelets to the point of hospital admissions with neutropenic sepsis, but it does take time for your body to start show signs of improvements. Keep a diary of how your feeling or side effects.
Highly recommend a book or something on a tablet to watch. It's long day and if you can, give yourself plenty of time to rest. All the best!
I have had it. I personally haven't seen.much if a change but my blood tests are saying different. I had extremely high CK levels late last year and they have come down a huge amount with prednisolone higher dose, then tapered down and the infusion. I still.hsve alot of pain and tiredness etc but it seems to be doing something good inside my body!
I felt a little sick a couple days after them but then I don't recall having any serious or very noticeable side effects.
I want to try the imoglobiline (or something like that) that has been mentioned to me if the rituximab isn't that great. But I think I have to do it s good few times and then if its not working for me they can look into the other one. It's very expensive so they don't want to do it for me! Sadly.
Hi have had retaxibub twice to help with lupus/ myositis and found it's very good short term but wears off after about 2 months. Goid luck x
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