Rituximab replacement

[Cathy777]

Has anyone on ritux been asked to go over to another drug which I am told is same but I guess cheaper? Need to check it out but maybe someone can tell me about it? Thanks

[dobsey]

I've had it. Had a major reaction to it

Beware of it the bruising all over

My body. I am still Itching two Months later. Worse than a rash. Looks like you have been beaten up

Also blood pressure dropped

Normally 125 /70. Dropped for several weeks to 98/ 50 be very weary of it

I woukd refuse it to be honest. Wish I could post the photos it would frighten you. I had the bruising every where

Right up to My jaw Stopped short of my face. All Over my torso and neck

Show me how to Post photos on here and I will Post the photos

They will frighten you

Just did a post about this with photos , have a look for it Cathy

David

[Cathy777 in reply to dobsey]

Thanks David. I can refuse to change so I think your reaction has answered my question. I am due for my next infusion this Friday and was only telephoned last Thursday to ask if I would change over. Not enough time to do any research myself. Have you gone back to rituximab? Cathy

[AgedCrone in reply to Cathy777]

Hi Cathy

I am very relieved to hear that you were asked ahead of time if you agreed to swap.....my next infusion isn't until October....I will wait with baited breath. to see if I get a phone call.

If I do I will refuse to change.

I will print David's photo to show my Rheumy if he questions my decision.

Hope all goes well on Friday.....at least it's a day with our feet up!

[Cathy777 in reply to AgedCrone]

True but I have to be there by 8 am and have to go on buses which takes near on 2 hours! But worth it I guess. Yes they only rang me last week so not much time to decide. But I said I needed to think about it. Not sure if David is on rituximab or this was his first experience with infusion and whether he would have reacted to rituximab anyway.

[dobsey in reply to Cathy777]

I'm On rituximab. I've had four previous infusions of it

They just write and said they were. Hanging to it as it's cheaper. I didn't have a choice as its bio similar Yeh like hell it is

[dobsey in reply to Cathy777]

They said I will go back on it but I'm seeing the Rhummy on the 3rd August. A lot to discuss. I'm not a happy bunny

[Cathy777 in reply to dobsey]

You had the right to stay on it according to my doctors. Hope you get it sorted

[Neonkittie17 in reply to dobsey]

Hi Dobsey I'm so sorry this had happened. How long till you can go back to the original?

[dobsey in reply to Cathy777]

You better phone them before hand otherwise they may say they don't have rituximab

[Cathy777 in reply to dobsey]

He is calling me tomorrow so I will check. Thanks for tip.

[AgedCrone in reply to dobsey]

As I understand it you only have the choice to refuse if you are going to be switched to a bio similar when you have already been on RTX.....not if you are having your first infusion.

If you think about it - it maybe because if you have the original RTX in your blood, that adding the Biosimilar upsets things. Although 'they ' must have done tests to investigate that.....mustn't they?

[Cathy777 in reply to AgedCrone]

I am at hospital having my rituximab now. I was told by a pharmacist who gets drug prepared that they aim to get everyone on the bio similar eventually. Then a young lady came round and said they were fighting this decision and asked me to fill in a form with various questions. These are apparently to fight the decision to change to bio similar. At least we may have a chance. I said if I am put on this new drug I would psychologically find it difficult to adjust to. We will have to wait and see. People have made the change already and the doc said everyone is fine on it. But they would say that wouldn't they!

[bella-bailey in reply to Cathy777]

Hi Cathy,being a bit ignorant here,what is Bio similar please,I was taken off Rituximab a few years ago as I was having bad reactions to it I am now on Abatacept monthly Infusions which I still get reaction too x

[AgedCrone in reply to Cathy777]

I agree with your take on this.

I have copied the photo David posted & will take it to my next RTX infusion....if that is"fine" I beg to differ!

If it does become a fact that they insist everyone switches, I will ask my Rheumy how long it takes to get it out of my system& will stop having infusions.

If I switched I would probably end up with all sorts of psychosomatic symptoms even if I didn't get a real adverse reaction....& I'm a committed " I'll take anything to take away the pain person".

Hopefully if the Biosimilar is successful the " real stuff" could become affordable to have Privately?

It's all quite distressing ...which we can all do without.

[Neonkittie17 in reply to AgedCrone]

Hi Cathy hope you get on alright at your next visit. Where can I see Dobsey's reactions. Thanks.

[Cathy777 in reply to Neonkittie17]

Oh he put a photo up on here. I think you must go into his profile pic. I saw it but can't recall where!

[Neonkittie17 in reply to Cathy777]

Thank you.. I'll try find it.

[Cathy777]

Well rituximab is the costliest of all the bio drugs and a new drug has been made which apparently does exactly the same so its called a bio similar. But I am not convinced. Its just a lot cheaper. They don't like the fact rituximab costs so much. I guess it makes sense but its very upsetting to have to change from something to the unknown. Someone on here changed and had a very bad reaction to this bio similar. Not sure if other drug duplicates will follow.

[AgedCrone in reply to Cathy777]

If you google Biosimilar research you will see there are already quite a few in use & many in the pipeline.

I wonder how much/any research has been done on people already on the "real stuff" being switched as opposed to just going straight on to a Similar?

After all there ( to my mind) is bound to be a different reaction if you already have RTX in your blood ?

Isn't there?

[Cathy777 in reply to AgedCrone]

I will look it up. Well I want a lot more info before I go on it. If I go on it. I think the more of us who refuse the better. As I said, I filled in a questionnaire going around which is an effort to resist this change. I think there will be a fair number who refuse this change. Yes it is stressful. I had stress waiting to know if I had been approved for RTX and now this. I think only new patients should get it as they know no different. It may be fine for them. I know I will be scared changing. I was limited to RTX cos its the best one that was suitable for people who had cancer history. Oh well I have my second infusion in two weeks and then I will just wait and see. Wonder how many are on RTX.

[AgedCrone]

. If you read the research notes on Biosimilars you will see they are produced in exactly the same way, with just as much testing etc as the original Biologic they a mimicking, & I'm sure no scientist sets out to harm.

But how much research has been done on giving the Biosimilar to people already taking the original? I can't find anything on that.

It's a no brainer to start people on the cheapest effective drug.....but don't we all know people who still insist on paying over the odds for trade name Ibuprofen, when the copy is exactly the same ? So the pharma industry need to produce far more information on the available results on Biosimilar Biologics on people who have been on RTX/ Mabthera for a while.

I too was put on RTX because I'd had cancer. How much research did it take to decide that? Has the same amount of effort been put into deciding if the similar is equally safe?

We could go around in circles on this couldn't we?

I won't switch.....until I am convinced I won't end up far worse than before I started the original ! End of!

[Cathy777 in reply to AgedCrone]

Here here!

[Neonkittie17 in reply to AgedCrone]

I was looking for the same research and info as you are. Can find nothing. x

[Neonkittie17]

I am sorry to hear of severe reactions and concerns too. I am very unhappy about being told I have to swap to a biosimilar for Rituximab. Received the letter and booklet just before my latest infusions (last week and three weeks previously.) My hospital aren't using Rituximab biosimilar till next month. I was told in the letter received to register my concerns with a nurse on a helpline number which I did within the timescale. There wasn't anything to say you could stay on it unless you have a reaction. The young nurse on the phone told me there's would no longer be original Rituximab/Mabthera and then in the next breath told me that I could I my switch back if I had a severe reaction?? She seemed very confused and now so am I! I just understood the patent had run out and other companies were allowed to make it much cheaper. Well If you react to it and have to abandon treatment etc I presume you have to wait serveral months before going back to the original and by that time you go downhill. I plummet very very badly in such cases. Usually bed bound for weeks. I've been steady on it now and best ever drug for me for over three years and feel really stressed and distressed that the rug is being pulled from under me. I go downhill rapidly and did so before Rituximab and ended up with such a lot of joint damage waiting to start it in 2015. I am really worried but my next infusions will be Spring next year so I have time to talk but it's worrying me. Consultant RA clinic review in November.

[Damaged]

I am on Rituxan but have no intention of repeating it. I also do not intend to switch to Biosimilars.

In fact I seriously doubt I will continue MTX. My blood pressure has hit the floor again. Average 90/55 and heart relate has been 108-124. I feel so aweful. I am lightheaded, weak difficulty breathing. Feels like my heart is in my throat.

Next week I will make dealing with abscess my priority. It may be playing a significant role in how bad I feel. My husbands coverage has finally kicked in. I did not have 700. To fix another dentists mistakes. He left a piece of file at the bottom of the root. I will never allow a regular dentists to do root canals. Clearly they are not qualified.

[Neonkittie17]

Just to update, I met with a rheumatologist yesterday at my routine three monthly clinic review. It wasn't my usual rheumy but the one was excellent. I told her of my concerns re swapping to a biosimilar for Rituximab given my history of always plummeting very fast with joint damage and immobility and when I have been left too long between infusions, so I didn't want to risk upsetting the even keel I am on. Also as I am very stable with my hyperthyroidism I don't want to have that playing up as I've had serious issues there before.

She was very understanding and said I would not have to swap and she would be writing yesterday to the pharmacy to ensure they keep me on Rituximab and copying the other consultants and rheumy nurse in on that. She said each patient should be reviewed individually with their case history to the meds they've taken and the state of their RD. I'm writing a letter to her to confirm what we said and so she can copy that to the rest of the rheumy team. I've time to check this is in place as the hospital pharmacy have let me down before not requesting my anti TNFs and making me wait 5 weeks a few years ago, so I don't trust there, but it's not till February I go back for infusion so let's hope they are more efficient this time.

I did a lot of research and do understand the way forward in all these meds could be that we only have biosimilars to choose from in future and they are the norm in time to come, but for me it isn't right just now and I've just started to come round and get decent mobility the past couple of years since starting in 2015 after several roller coaster years of failed and waning meds. I've had a very hard time if I'm honest.

If Rituximab fails in time to come and I have to switch further down the line and biosimilars have proved to be just as effective then I'm much more likely to say yes. Just as we all gain confidence with a med that's been used for many years and with minimally known side effects.

Good luck to you all who are making the decision what to do about biologics and biosimilars.