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Date: 10.06.2012
From: rhona

Subject: rituximab

Hi, I had my first infusion of rituximab on Thursday, i was hoping someone could tell me how long it took for them to feel the benefits from it.
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Date: 09.07.2012
From: kellyu

Subject: Re: rituximab

hiya bit of a late reply as you maywell find its already working ...i am due for another course of rituximab this month as i can fel it wearing off its been 6 months ...the first time i had it it worked within 2-3 weeks so pretty quick ..this is a amazing drug and has worked wonders on me im so thankful it has help me lead a pretty much normal life ....i still get tired and some days a little pain but nothing compaired to what i was getting before ...fingers crossed it works just as well for you
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Date: 09.07.2012
From: rhona

Subject: Re: rituximab

Hi Kelly, Thanks for you reply, i had my second infusion just over 2 weeks ago, that completes the first course. I am not sure if its starting to help yet or not as i had 2 steroid injections just before the 2nd infusion. I'm glad it is helping you. Was it 2-3 weeks after the 1st or 2nd infusion that you felt it starting to work? I wish you all the best for your next course. xx
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Date: 15.07.2012
From: suz

Subject: Re: rituximab

Hi Rhona and anyone else on Rituximab..

My NAME is suz, i have recently had this infusion my first infusion ever and its making me feel really tired with high and low tempertures. My body has been heating up really badly the last 2 days it starts of with slight shiver. I think I felt good only one day after having the infusion. I am really scared to go for my second infusion cos of these feelings plu my joints feel worse too.

How do you and others feel on this drug, are they temporary.

Hope its all well though.
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Date: 15.07.2012
From: rhona

Subject: Re: rituximab

Hi Suz, I had my first infusion just over 5 weeks ago and like yourself felt a bit better the next day but that was because of the steroid that they give you before the infusion but i wakened up the next morning with my hands feeling that they were on fire and tingling really badly, i didn't feel any benefit and like yourself i felt my joints worse, 2 days before my 2nd infusion i had a hospital appointment and they gave me 2 steroid injections because my mobility was bad and that helped. I got my 2nd infusion just over 3 weeks ago and the next morning i wakened with my eye burning but that passed. I think they may be starting to help a bit as my mobility is better than it was but my hands are still sore so i am hoping it will show more of an improvement over the next few weeks.

I think the symtoms that you have described are quite common. When you go for your next infusion tell them of your symtoms and hopefully they will reassure you or you could call and tell them how you are feeing and see what they say.

Keep in touch and let me know how you get on.

Best wishes,

Rhona x
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Date: 15.07.2012
From: suz

Subject: Re: rituximab

Thanks for the reply Rhona, I am still suffering from the drug effects, The fact that it makes someone feel worse in joints question me the success of it. My body heats up and just looks red. my ankles have gone all puffy, did not have this before the infusion. do u have this? sorry dont mean to say you should have it..

I know Kellyu mentioned she felt quite good with this treatment so just wonder if works for everyone.

I will speak to my rhueemy team.

Take care too hun x

Takecare
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Date: 15.07.2012
From: rhona

Subject: Re: rituximab

Hi Suz, When did you get the infusion? i have been told it can take a while to work. I read on one site that it takes about 6 weeks to start working, i also read on another between 2-16 weeks. I did feel worse after the first infusion and i also felt very tired and my hands were so hot i had to get ice to put on them. I didn't get swollen ankles but everyone is different and can suffer different side effects I think you should call the rheumy team and see what they say, it's always best to report any side effects, especially if you have had them a wee while. When i was getting my 2nd infusion there was a lady also getting her 2nd and she was telling them that she had bad flushing after the first one and had to call the on call rheumatologist at the hospital and they said it could have been the steroid that caused it although i would have thought it more likely to be the infusion, especially when my hands felt that they were on fire. They say that reactions are less common with the 2nd infusions but i would give them a call. let me know how you get on.xx
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Date: 05.01.2013
From: suz

Subject: Re: rituximab

Hi Rhona.

How are you feeling since having your infusion? Im nearly 6 mths now since my infusion and to be honest with the last four weeks have been the worst bad knees, sore elbow and wrist... I wonder if the infusion has weaned off or if my arthritis is just getting bad. Anyway The consultant wants me to have another dose.

what about you, I hear you take MTX and lefulnomide, have they made you feel better along side the rutuximab?

Take care
Suz x
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Date: 05.01.2013
From: rhona

Subject: Re: rituximab

Hi Suz,

Good to hear from you again. I am sorry to hear that you are not doing so good. I went back to the hospital in september as i was feeling awful (almost 4 months after getting the infusion) and i was given 2 steroid injections, one in my knee and one to help all over and they said i could get a different type of infusion in January. The funny thing, i then started to feel a lot better and put it down to the steroid injects but i continued to feel a good bit better and when i went to the clinic in december the nurse agreed it was the riuximab working, she was going to speak to the consultant and see what he thinks but she recommends i get another infusion of rituximab this month. I am still suffering, my shoulders and hands are sore but i am able to get around a bit better, before it worked i could hardly walk at all.

I still take MTX but i have never had lefulnomide. I also take sulphasalazine and plaquenil.

It is hard deciding what to do for the best, i am thinking i will probably get another course of it unless they decide to try the other one because of the side effects (burning eye etc) i am just waiting on the appointment.

I do hope you feel better soon,

Keep in touch.
Rhona x
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Date: 07.01.2013
From: suz

Subject: Re: rituximab

Hello Rhona,

Thank you for your empathy. I hope you have had some success from Rutuximab. My consultant does want me on another DMARD as well as the infusion but I just don't feel like overloading my body with so much of these toxic drugs.

but I understand your taking 2 DMARDS along with this infusion, has it made you feel better?
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Date: 07.01.2013
From: rhona

Subject: Re: rituximab

Hi Suz,

I have been taking the DMARDS drugs for a around 12 years before i got rituximab. They usually prescribe methetroxate along with rituximab unless it doesn't agree with you. It might be worth trying as it could be more effective and if it doesn't agree with you then you could stop it.

I hate taking all the drugs too but i hate being unable to walk more and the rituximab has helped although i still don't feel great but better than i was.
xx
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Date: 11.01.2013
From: suz

Subject: Re: rituximab

Hello Rhona,

How are you? I am feeling down on the dumps cos of the R.A the aches and pains from it just doesnt make me feel like doing anything or bother with anything, like you said on one of the other threads 'you wouldn't be good company to anyone' I feel exactly the same some days.
What can we do eh? we just need to carry on however way we can and just be positive about the things we have in life and live for those reasons. sorry dont mean to be a philospher for life lol...

I am due for another infusion for rutuximab soon, how about you? are they going to try something different for you...

Take care
xx
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Date: 11.01.2013
From: rhona

Subject: Re: rituximab

Hi Suz,

Thanks for your post, you are right we just have to carry on, i suppose tomorrow i will feel a bit better.

Have you got a date for your infusion yet? i am still waiting on them getting in touch, i was told they would write with an appointment for this month. I suppose i could get in touch with them but i can't even get motivated to do that. i am not sure what they will offer. I think it will probably be the rituximab though.

Have you felt much of an improvement on it? I hope you are not in too much pain.

Take care xx
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Date: 12.01.2013
From: suz

Subject: Re: rituximab

Hi Rhona,

I did have a appointment but cancelled it this week due to feeling a little unwell the past week. I don't think I have had much improvement with RTX infusion as the last month I have been much stiffer and in pain than usual. maybe it helped a little bit but not as much as I thought it would.

Have you felt any major improvement as you been taking it with the other DMARDS...
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Date: 12.01.2013
From: rhona

Subject: Re: rituximab

Hi Suz,

I would say i have definately improved with my walking but my hands are worse than they were and they look quite swollen and starting to get a bit mishapen (well my left one is).

That's a shame if it hasn't helped you. Do you take any other drugs? I think we do need the drugs as it is a horrible disease and if they help to prevent joint damage it is worth it.

I have heard that sometimes having a 2nd course if rituximab can be more effective but it is hard knowing what to do for the best, especially if you haven't had much of an improvement. I think you should speak to your rheumatologist and see what they think is best. Have you tried any other biologic drugs? I had enbrel but it didn't help at all.

I hope you feel better soon,

Take care,
xx
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Date: 14.01.2013
From: Suz

Subject: Re: rituximab

Hello Rhona,

I have tried MTX and little bit of Plaquenil but I didn't stick to them to be honest MTX made me feel tired for some reason I felt my hands looked more mis-shapen while I was on it more swollen.

This is my first biologic Rhona, I should be starting Leflunomide with it but im such a scary cat with all these drugs but I know like you said we need drugs for this disease.

I just find it very disappointed when someone is on drugs and the joints still feel swollen or start deforming. Im sorry to hear your hands are swollen at the moment despite being on the other dmards.

I think maybe the DMARDS help someway and it doesn't target all the joints, I don't know maybe Im wrong...

I hope you get some more relief with next biologic infusion.

Take care xx
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Date: 14.01.2013
From: rhona

Subject: Re: rituximab

Hi Suz,

I'm sure you're right about the drugs, it is disappointing to be taking drugs and still be in pain etc. I think after a while they also become less effective.

Good luck with the leflunomide, i hope it makes a difference. Hopefully any problems would show up in your blood before any harm was done but it is a worry being on them.

Take care xx
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