Rituximab poss. next drug. What to ask the Dr.? Apt in three days.

[umamel]

I am new here.

I need to change drugs and my consultants are all recommending Rituximab. What do I need to ask them? What do I need to know? I was on enbrel for 9 years with quite good success, then contracted a vasculitis (HSP) and kidney disease (IGaN). Was treated with cytoxan and high doses of prednisione for 6 months. Since that time, I have not had an effective RA drug. Any thoughts would be welcome.

Thx. Umamel

[cathie]

I might have to go on this too. I'm going to look it up to get as much info as poss. Will want to know about how drug is delivered and monitored. What if it doesn't work? Next poss treatments - I always like a plan b.

[umamel in reply to cathie]

Cathie,

Yes, Plan B is a good idea. Wish there is a good one.

Maybe we are on the same path at the same time.

Good luck to you.

Umamel.

[mille]

Hi Umamel,

They should give you a leaflet on rituximab and it gives you some information on it. The infusions usually take around 6 hours. You are then given a second infusion 15 days later and that should last for 6 months at least. It does take quite a while to work, sometimes a few months before it's effective. You might want to ask about the side effects although all biologic drugs can increase the risk of infection.

[umamel in reply to mille]

Mille,

Thanks for this.

Should be interesting... I am some how quite apprehensive about it all.

It sounds like a step up, meaning harder than the other biologic drugs. We shall see.

Thanks again.

[mille]

Hi, I thought that too, especially the side effect of PML but was told that all the biologics have the potential to cause that. It is very worrying, but the side effects of r/a are not good either and if it keeps you mobile it is probably worth it. Have a discussion with them and tell them of your fears and see what they suggest.

Take care x

[Giggle]

Hi Umamel I have just started on rituximab. Had my second of the first round of infusions 3 wks ago now. I did find the potential for side effects esp PML very frightening and the potential for infusion related anaphylaxis. I can say that you are monitored very carefully during the infusion and at any time if there is the slightest sign of reaction or I was concerned it was stopped and I was checked over and it wasnt restarted until i was happy for it to.The nurses on the ward were fantastic as they knew how frightened I was as I've previously had an allergic reaction. One of the reasons I started on rituximab was because I was told they have seen several people go 2 yrs and longer before needing another infusion and they said when your RA is active you're at just as much risk of infection than when on a biologic treatment. I have 2 young boys at home who both know how they need to be careful about hand washing ect and I carry a little bottle of hand gel and use anti bac wipes ect. I think the main thing is you have to be certain that you are happy to try this treatment. It might be a wonder drug for someone else but not for you. After the second dose of infusion I had terrible migrains and felt totally wiped out for well over a wk. I can't say I've seen any benefits as its not been long enough for that yet. I did google rituximab and possible pml and that made me feel a little better as it is so very rare. But as I said earlier its you that has to feel happy with starting the treatment not just what the docs feel is the next treatment on the list. I hope you have a rheumatology team that listen to you and discuss your concerns with you and that you don't feel pressured.

Good luck.

Lyndsey x

[umamel in reply to Giggle]

Lyndsey,

Thanks for your input here. It looks like this is the drug of choice. It is just a matter of time now and I will be joining you in this regime. Your side effects of the infusion are interesting. Migrain! that is not very nice. An wiped-out for a week. That is not good either.

I hope it helps you like it has so many others. I will be interested to hear your story as it unfolds.

thanks for your input here.

Umamel.

[Tillytop]

Hello!

I am on Rituximab and I, too, was worried about potential side effects, having previously become allergic to two of the other biologics. But I have been on it for a year now with no apparent side effects and I now feel much more confident about it. Before I went onto Ritux I did some research and found that, actually, when I compared the side effects listed on the patient leaflet with those for my previous two biologics, there was actually very little difference. I also discovered that, whilst my most recent pre-Rituximab biologic was listed by the Medicines and Healthcare Regulation Agency (MHRA) as a "black triangle drug" (meaning, I believe, that it needs to be more carefully monitored for side effects) Rituximab was not and that gave me some more confidence about it.

My understanding is that it isn't a "stronger" med than the others - it just works differently, by suppressing B cells, rather than the TNF cells which are targeted by some of the others. I was warned that it is definitely not fast acting and I was told that it could be up to a year before I would know if it was going to work. At my hospital the second cycle of two infusions is routinely given six months after the first and then cycles are repeated as and when needed depending on response. Apparently the time between infusions is very variable - I met a lady who was happily going a year between infusions and a man who struggled to wait the minimum 6 months between them. In my case, I missed the second cycle of infusions due to other health issues so, by the time I had it I had pretty much "started again". It is now 4 months since my last infusion and I am definitely seeing the benefits now. I have had no problems with it at all - other than feeling completely "steamrollered" for a few days after each infusion (oh and I had severe fluid retention in my feet and ankles, which went after a week or so). The only downside as far as I am concerned is that I don't do well - head wise - with the effects of the steroid infusion which goes alongside each Ritux infusion. But I feel that, in my case, that is a small price to pay if it is going to help.

My experience at the hospital was just like Lyndsey's - I was brilliantly looked after and monitored very closely. Like Lyndsey I had previously had an allergic reaction to one of the other biologics and I was pretty scared when I went for my first infusion. But I couldn't fault the care and attention given to me by the nursing staff.

One final thing - at my hospital apparently Rituximab is now the standard drug after failure of an anti-tnf and I'm sure that wouldn't be the case if incidences of severe side effects were common.

Good luck if you do decide on Rituximab.

Tillyx

[umamel in reply to Tillytop]

Tillyx,

Your entry here is very helpful. I am beginning to see that what you comment on here is confirmed in my understanding as well. I thought it was stronger than the other drugs and like a step into another class all together. But I see now it is only a different class, not a stronger one. Some how this in easier for me to cope with.

Thanks for taking the time for this long entry here to share your thoughts. I am glad that it is working so well for you. That is great news.

It looks like I am headed for Ritux. Just more a matter of weeks now.

They will do a full check up next week and then decide.

thanks again.

Umamel.

[LavendarLady]

Hi Guys, just been reading all this as my Rheumy wants me to go onto Rituximab. Hve an appt on the 12th March to discuss with the Biologics Nurse. All your replies have been very helpful. Many thanks. LavendarLady x

[watson3]

Hi I was offered this drug, have a look on the ARC site also, gives an indepth explanation on the drugs side effects and efficacy verse cost for hospitals. Makes for interesting reading, Good luck.

Nice guidelines state that this drug is next in sequence after failure of 2 DMARS and at least one ANTI TNF, but they are guidelines. Check with your consultant why this should be the next drug of choice for your condition.

it may have less undesirable side effects and carry less risk of serious side effect thsn others.

[LavendarLady]

I have had a failure of two anti TNFs as the Enbrel is no longer doing what it should and that replaced Humira which brought me out in a rash! Also had failure of DMards as well, having been on Naproxen, Hydroxychlorquine neither of which did anything for me at all, and taken off MTX last November due to contracting Pneumonitis caused by the MTX. So Rituximab seems to be the next option. LavendarLady x