Help with choosing the right Biologic: Hello. I have to... - NRAS

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Help with choosing the right Biologic

Aloquifiqie profile image
22 Replies

Hello. I have to choose between one of 3 biologics and I don’t know what to go for so any feedback would be welcomed. They are: Abatacept injections; Rituximab infusions; Baricitinib tablets (Jak inhibitor). Thank you all for you thoughts xx

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Aloquifiqie
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22 Replies
KittyJ profile image
KittyJ

If you type those drugs individually into the search box and filter for NRAS it will come up with all the posts about them.

Also NRAS has information here

nras.org.uk/publications/me...

I hope that is helpful to you.

Aloquifiqie profile image
Aloquifiqie in reply to KittyJ

Thank you! I will definitely do that xx

helixhelix profile image
helixhelix

Interesting choice! I guess you are in the US? And you have tried and failed anti-tnf drugs?

You are being offered three very different drugs, a T-cells inhibitor, a B cell and a Janus Kinase inhibitor. So each one works on a different element of your immune system and there’s no way of telling which one will be more effective for you. Each of them works wonderfully for some people and does nothing for others - which I guess you know!

However each has a very different delivery route, so that might be the first thing to think about. Do you prefer a regular weekly injection you can do at home with a drug that needs to be stored in the fridge, an infusion that has to be done in a hospital but not very often, or a daily pill? Which suits your life better?

Then look at the information about each one (google each name plus Patient Information Leaflet) and read the sections of risks and possible common side effects. Which feels most comfortable to you?

You can also think about their track record, rituximab has been used for the longest, then Abatacept, and Baractinib is the new kid on the block.

Failing all that stick a pin in the list of names....

Aloquifiqie profile image
Aloquifiqie in reply to helixhelix

Thank you! I'm veering towards the infusion mainly because I fancy a hospital 'spa' day and as you say, there is no guarantee on anyone of them. So in the end I guess its a lifestyle choice. Thanks for your advice xxx

sylvi profile image
sylvi

I recommend you ask for a leaflet on each of the drugs and look at their side effects before you decide.xx

Aloquifiqie profile image
Aloquifiqie in reply to sylvi

Yes I have the leaflets but I guess I wanted some anecdotal info as well to add into the pot of confusion!

in reply to Aloquifiqie

With Rituximab you will need two separate infusions and they can take about 6 hours each. I wouldn't call it a spa day, but as you will be at the hospital, should any problems arise, you will be in the right place.

sylvi profile image
sylvi in reply to Aloquifiqie

Some people haven't had any side effects to biologicals, I did both times. My trouble is I am prone to chest infections and that was why I was taken of Cimzia. I was taken off Baricitinib at Christmas due to breathing difficulties caused by the drug and have since had a chest infection. Now for most people these two drugs work perfectly. Sad to say for me they didn't though I found benefit from the last drug.xxxx

Silverpixie profile image
Silverpixie

How can a patient be left to choose? These drugs work on different parts of your immune system. I tried 4 biologics here in the UK, none of which worked including two of the ones you have listed. The fifth one I tried has transformed my life. It was a long process but my nhs experience has generally been very good.

28maggie11 profile image
28maggie11 in reply to Silverpixie

I am on my third biologic. Benepaly did not work, Humira caused a rash and now on rituximab for 2 years. Personally I don't think it is working but rheumatologist wanted me to try again. Reading your post I felt hope. Would you let me know what the name of your 4th is?

Silverpixie profile image
Silverpixie in reply to 28maggie11

I began on cimzia then simponi then rituximab then abatacept. Abatacept gave 75%improvement (the others none) but my rheumatologist wanted more as previously I had been a slim active woman in her 50s. She then tried tocilizumab. I have been on this for 30 months and apart from a few little isolated joint issues it has been wonderful with no noticeable side effects. It did take 3 months to truly kick in though.

28maggie11 profile image
28maggie11 in reply to Silverpixie

Thank you I shall make a note and then have options to discuss if this rituximab infusion does not work

sparklyshazza profile image
sparklyshazza in reply to 28maggie11

If its not working after 2 years it needs reviewing... abatacept!

helixhelix profile image
helixhelix in reply to Silverpixie

But isn’t that the issue? There’s no way for the doctors to tell which will work better for you. They have guidance to start with simplest, ie anti-tnf. But after that isn’t it appropriate to ask patient if they have a preference of delivery route?

Aloquifiqie profile image
Aloquifiqie in reply to Silverpixie

I know. Isn't it interesting that I'm given the choice! I have been on benepali for about 2 years so am used to the injection routine. I'm in the UK too - London. Curious to know what was the 5th biologic that worked for you?

AgedCrone profile image
AgedCrone

The only person who can advise you which drug of any kind that would best suit you is your rheumatologist.

The three drugs you mention are the ones your doctor thinks will suit you and it looks as if it is just down to the manner in which you take them.

I’d have a word with your rheumatology nurse if I were you .......they are the most experienced in knowing the reactions people have to each drug.

Unfortunately nobody can forecast how any individual will react to any of these drugs.

The only one I have any experience of is Rituximab and if it suits you I think it is the most convenient .... you just have two infusions two weeks apart every six months...each infusion takes up a whole day& you need to have a blood test prior to the first infusion.

I hope whichever you choose is successful for you.

Aloquifiqie profile image
Aloquifiqie in reply to AgedCrone

Many thanks. I am veering towards the infusion. But as you say ... who knows how you'll respond as an individual is up in the air. My Rheumy Consultant says you could have personalised DNA test which would tell you how you'd respond to medication but that would be way to expensive for the NHS.

AgedCrone profile image
AgedCrone in reply to Aloquifiqie

I just want to get on with my life without constant reminders of treatment & for me - after 4 years I have only had the odd hiccup - I don’t have to have anything to do with RA treatments...no carrying pills around & no monthly injections.

Very good luck which ever you choose.

yarts profile image
yarts

I have tried them all and they all failed, most with side effects mainly skin rashes (I was taken straight off them when that happened) I am now on the last available to me (according to my rheumy) which is Baricitimab and I am doing well on it with no side effects, still have to take small dose if prednisolone.

Good luck with what you choose and as most people have said we are all different.

Best wishes.

Lolabridge profile image
Lolabridge

Of the three you mentioned I have only tried Rituximab. After 2 cycles it seems to be working well for me with no apparent side effects.

My consultant chose to put me on it after Benepali had not worked sufficiently because I had some respiratory/lung issues and he thought it would be less likely to cause me further problems.

I quite enjoy the day at hospital for the infusion and although some people have had headaches for a day or two afterwards I haven’t had any.

If you read up about each drug on the NRAS website it will help you come to a decision. Good luck.

Mmrr profile image
Mmrr

I've been on benepali injections which worked for a short spell then I developed antibodies. The downside is having to store the injections in the fridge.

I'm now on a JAK inhibitor, baricitinib, which is taken in tablet form. It has a very short half life so leaves the body quickly should there be any issues. It pleases me that the drug can be out of my system quickly.

I've not had the infusions.

Darwin profile image
Darwin

I have had six failed biologics am on Baricitinib now it’s not perfect but better than all the others I’ve had x

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