RITUXAN users SUPPORT THREAD | Arthritis Information

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Hi guys, yep I know, it is happening I think, I have had a reasonably good week, when I am good, I am really good and very excited, and when I am bad, I am not as bad as usual, woooohooooooooooo  GO RITUXAN - we should start a RITUXAN support thread and I say this is it, any takers?  Also my bloods yesterday showed a decrease in ESR and CRP, yeeeeehaaaaaaaaaaaa I'm in...And congrats Cheers Jas! Its wonderful when a drug works so I am pleased for you.

 
I've not had any serious side effects,  I don't get sick, haven't had any infections,  the only problem I had was a little nausea after the first set of infusions.
 
I've had severe RA for nine years. 
Lynn you are very lucky. My husband ended up in hospital using Rituxan. He was seriously ill although this does not mean others ill do so , this is not meant to scare anybody it was just a personal account. He is now on Remicade, this has been a life saver for his case.
A wee girl we know is on antibiotics for her Jra, she is responding so well to them . She has not missed 1 single day from school this term, last year before AP she missed 2 entire terms. There are no right or wrong treatments for anyone.

I've always said...RA is not a one size fits all disease...Despite what some posters think

 
xxxxxxx
Thankyou Lyndee,  I appreciate your encouragement, hugs Janie. Glad to hear it Janie!  May it continue a  long long time and only get better!I'm so glad you have found a medication that works!  That is so inspiring for those of us who are still looking!  Best of luck.
PhatsThanks Phats, Snowowl and WTBR, I am so excited, hope it lasts. Kind regards Janie. Janie -
 
I think this thread is a fabuolus idea.  I'd like to request that those of you getting blood work all the time, would you check your CCP's and post them?
 
Thanks,
 
Pip
I can't really pass judgement yet on the drug.  I had my first dose Jan/Feb.  Don't really feel better, but as I mentioned before, we think it is due to the jaw drama.  I am hoping to feel effects after my second round.  He bumped it up to June.  How long do most of you guys between the infusions? [QUOTE=rocckyd]I can't really pass judgement yet on the drug.  I had my first dose Jan/Feb.  Don't really feel better, but as I mentioned before, we think it is due to the jaw drama.  I am hoping to feel effects after my second round.  He bumped it up to June.  How long do most of you guys between the infusions?[/QUOTE]

Rebecca, Rituxan patients seem to fall into to distinct categories. Some of them go as long as they can without another round and then have another whenever they feel they need it. I think Lynne falls into this category. The other kind of patient is me and Buckeye, who need multiple rounds to achieve stabilization. I am one of those patients who has to have a new round every six months making sure my doses overlap or I can flare.

Australia is different to the US. Here you can only have Rituxan at six months or later. I think in the US you can even have it every three months if needed.

With your jaw problem, yes it's probably not helping the Rituxan kick in but there is no idea when and how this happen. Standard times for kick in Round 1 is everywhere between 8 to 16 weeks. Repeated infusions can be like this also until you stabilize.

After four years of searching this is the only drug that has touched my RA due to it's severity.

Symptom wise, I find it works like this for me - fatigue changes first, suddenly you have energy you didn't have, then your joint swelling reduces and then the pain.

I said on another thread that I had 42 swollen joints prior to the 1st round of Rituxan and 4 afterwards.

When I look at the bigger picture I see that in 2007 I was bedridden most of the year, whereas last year (post Rituxan), not nearly as much. Yes, I was unwell but not to the bedridden stage. So yes, I do see improvement. No fast improvement but I will get there.

Hope some of that information helps.

I forgot to add   (((((((((((((((((((())))))))))))))))))))))) Even though I'm supposed be addressing save the dates...Let me try and answer your questions (and bless you for asking them so I can take a little break
1) I had already tried Humira and Enbrel
2)I've never had a port
3)I get my infusions in my RD's office and I am able to have my Rituxan shipped there
4) Solu-medrol before the infusion
Lynn492009-04-03 14:32:41YAY, JANIE!!  I am so happy for you darlin...........that's wonderful news!!
 
and Cordy... I have to say I would cry my eyes out reading your posts when you were so so bad....  I am so thrilled that y ou are doing great!!
 
Waddie..I hope this or something better comes your way
 
Keep up the good work, all!!! 
Hey Waddie...
1)  Did most of you fail other TNF drugs first? I have been on all the others.  I have had RA since a teenager so I didn't move up the ladder too quickly.  I was actually my RD's first patient on Enbrel.
 2)  Do you all have the ports?  No port.  You get this med about twice a year.  You have two infusions 2 weeks apart, and then the next 2 about 6 months later.  Some can go longer, I will be a little sooner.  This dosing is one reason why I was switched to Rituxan.  I have awful veins.  It once took them about 15 times to get a vein.  I was going to get a port if I stayed on the Orencia.
3)  Do you get your infusions in RD's office or hospital?  My RD's office has an infusion suite.  Not all do though...
4)  Do you have to have benedryl or pred. prior to infusion?  I get tylenol, solumedrol(spelling), and benedryl prior.  Only the tylenol is by mouth.
 

Congrats Janie and all of you on Rituxan!!!!  We have it here in Croatia but it is prohibitively expensive otherwise it would be next on my list, my RD highly reccommends it!Thank you Lynn and Rebecca!  That means so much to me!     Waddie, here's my answers to your questions...
  1. Yes, I failed the other TNF's. I tried Humira and it gave me such bad respiratory infections I nearly ended up in the hospital. I built an immunity to Humira and the other TNF's so I couldn't use them. I have done pretty much all the major DMARD's and combinations of them. Some I had some response to but not enough to achieve remission, others like Arava did absolutely nothing at all. I haven't tried Orencia. In AU, Rituxan is not tried until you have failed the more basic drugs. It's highly controlled here and very expensive. It also has some major risks with it so naturally, RD's don't usually start with it when they can use...say, Arava or Sulpha which have less risks associated with it. Oh, and I'm still on 10mg of MTX a week as research shows all the other DMARD's work better with a tad of MTX.
  2. Infusions are usually six monthly at the closest so no ports. Yuk. They have to book an aneathatist to get my cannula in but I would rather do that 2 times every six months than stick myself with a needle every week or fortnight. Ports are only worth it if you have to have a lot of infusions all the time, like weekly.
  3. I go to the nearest major hospital to a special area called SPA - Surgical Procedures Area. A RN does the infusions, she is very, very experienced and has been doing it a long time. SPA has the most amazing comfy recliners that you can actually sleep in since you are there ALL day.
  4. Methyl prednisolone (I think it's the same as what Lynne has over there - Solu-medrol) in my pre med and Phenergan. I had an anaphalactic reaction on my first infusion so I don't do an infusion without some Phenergan to cover me.
Good questions, Waddie.




 Thank-you Cordy.  I forgot to ask how long it takes for an infusion!  All day?  I like the idea you get to go to a SPA!!!  I know it means something different in AU, but it conjures up mud mask and massages to me (even though I have never been to one!)  If I decide on Rituxin, that will be my happy place!

Thanks again, Cordy!
[QUOTE=waddie]Thank-you Cordy.  I forgot to ask how long it takes for an infusion!  All day?  I like the idea you get to go to a SPA!!!  I know it means something different in AU, but it conjures up mud mask and massages to me (even though I have never been to one!)  If I decide on Rituxin, that will be my happy place!

Thanks again, Cordy!
[/QUOTE]

Waddie Janie, this is amazing news.  Cordy, you are a different woman due to Rituxin and I'm so happy for you.  Lynn, you've had the longest remission and you must be super, super happy about the results.  If Humira fails me then I'll go to Orencia or Rituxin, so it's really informative to read the posts from all of you.  Thanks.  Lindy [QUOTE=LinB]Cordy, you are a different woman due to Rituxin and I'm so happy for you. Lindy[/QUOTE]

Thanks, Lindy. On a day to day basis, I am not seeing the stabilization yet, but it will happen. It was very encouraging lately to hear from Buckeye that with her last round, number four for her, that she had achieved 4 months stabilization. I am just about to do round 4 and am at the place where I have accepted that it isn't instant for me but I do see improvement in many ways.

It's strange the last four months my ESR and CRP have been through the roof. My pain and stiffness levels super high and I have generally felt like crap, but through all that, I have had these bursts of energy that are definitely Rituxan.

And when you look at it in terms of years - 2007 bedridden, 2008 not, 2009 (so far) not.

Also if I look back at where I was a year ago and what I was dealing with, none of those things are an issue now.

It's taking time but I am getting there.
I don't know this for a fact.. but it appears that Rituxan may be the med that has the most and highest postive changes...
 
Interesting.....
 
 
1) yes
2) yes
3) office
4) iv solu medrol is part of the protocal.  You get it 30 minutes before the infusion along with an antihistimine and tylenol
[QUOTE=Pip!]Janie -
 
I think this thread is a fabuolus idea.  I'd like to request that those of you getting blood work all the time, would you check your CCP's and post them?
 
Thanks,
 
Pip
[/QUOTE]
 
you want someone to pay for an unnecessary blood test simply to post their results...that's assinine.  There is no data on the effects of treatment on the anti ccp but even if there were its none of your bloody business
[QUOTE=waddie]I have a question.   Rituxan is something else I am researching for my next appt., as I am sure most of you know, Enbrel, MTX and, now it seems, Humira are not going to work for me.  I want to be well armed with research on my next visit so we can get started quickly on the next round.  Okay, 1)  Did most of you fail other TNF drugs first?  2)  Do you all have the ports?  3)  Do you get your infusions in RD's office or hospital?  4)  Do you have to have benedryl or pred. prior to infusion (I may have this confused with something else).

Thank-you all so much!
[/QUOTE]

Hi Waddie, great question, and I am so excited about this drug as like Cordy, I am severe, have tried every drug and allergic to most or could not tolerate due to awful side effects.  Arava gave me the most relief but ended up with peripheral neuropathy so had to stop.  In answer to your questions.

1.Yes I failed by being unable to tolerate due to anaphylactic reactions.
2.  No I do not have any ports.
3.  Due to my allergic reactions history, I have to be hospitalised every time.  It is supposed to take 2-4 hours to infuse but we had to take what I could handle without throat tightening and swelling effects, it took 40 hours over two days, and then repeated 2 weeks later, 12mls p/h was all I could handle.  My veins were collapsing so I was jabbed about 5 times to find veins. 
4. Yes, I have to have phenergan, (an antihistamine), and methylprednisolone, both of these things are given twice over the 40 hours.

Hope this helps.  I found that I have bursts of energy and sometimes don't need my 6-7 tramal a day, ans when I do things now, I am not so debilitated afterwards on some occasions.  Still having lots of pain, but mainly due to ddd in spine and osteo in spine, I am trying to remain positive as some days are awful but I will take any good days I can get.  All the best.  Janiewow..Janie!
I hope that everyone here finds their "gold"
 
but probably you most of all.......  you take two days to get this infusion... every time and have had bad allergic reactions to all other attempts at keeping your RA at bay..
Thankyou Babs, I hope the same for you and your treatment, now I just have to work out how to help my son!  Hugs Janie. [QUOTE=LinB]Janie, this is amazing news.  Cordy, you are a different woman due to Rituxin and I'm so happy for you.  Lynn, you've had the longest remission and you must be super, super happy about the results.  If Humira fails me then I'll go to Orencia or Rituxin, so it's really informative to read the posts from all of you.  Thanks.  Lindy[/QUOTE]
 
Lindy,
 
I am ecstatic about my results from Rituxan!  Oops...I think I've already said that
 
  A couple weeks back, I spent 8 hours shopping and visiting wedding vendors with my youngest.  I NEVER would have been able to do that before to Rituxan....
[QUOTE=buckeye][QUOTE=Pip!]Janie -
 
I think this thread is a fabuolus idea.  I'd like to request that those of you getting blood work all the time, would you check your CCP's and post them?
 
Thanks,
 
Pip
[/QUOTE]
 
you want someone to pay for an unnecessary blood test simply to post their results...that's assinine.  There is no data on the effects of treatment on the anti ccp but even if there were its none of your bloody business
[/QUOTE]
 
Yes!!!! Buckeye!!!! Thank you!
[QUOTE=Dalmatinka][QUOTE=buckeye][QUOTE=Pip!]Janie -
 
I think this thread is a fabuolus idea.  I'd like to request that those of you getting blood work all the time, would you check your CCP's and post them?
 
Thanks,
 
Pip
[/QUOTE]
 
you want someone to pay for an unnecessary blood test simply to post their results...that's assinine.  There is no data on the effects of treatment on the anti ccp but even if there were its none of your bloody business
[/QUOTE]
 
Yes!!!! Buckeye!!!! Thank you!
[/QUOTE]
 
 

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