Humira, Enbrel or Rituximab? I wonder if anyone else was given a choice, and if so, how they reached a decision

[Jora]

I am due to start Anti TNF treatment next week. At my last appointment, the Rheumatologist gave me leaflets on Humira, Enbrel and Rituximab to peruse. I am not clear if this means I have a choice, but if I do, I wonder which is the most popular. As well as the risks, I might take into consideration HaH. Their 'service' sounds appalling. Why can't one pick up the stuff from a pharmacy like all other drugs, I wonder. It looks as if I would have to go to the hospital for Rituximab, but what scares me about that drug is the risk (not quantified) of Progressive Multifocal Leukoencephalopathy. Not only do I want to avoid that, I wouldn't want to spell it too often!. Jo

[MarshaM]

I was given the choice between Humira or Embrel. Not given any pamphlet's or info, just which one do you want. This was at my last Dr visit w no time to research. Dr said Humira is once every 2 weeks and Embrel is once a week injection. That's all she said. I picked every two weeks just cause I didn't want to inject every week. She ordered it and then gave me the pamphlet's and info to read. 5 pages of warnings - very scary. I take my 2nd inject tomorrow. Don't know if its doing anything yet as my inflammation was down and pain was minimal after finishing prednisone and steroid shot in April. Still taking plaquinel and mtx. Wish I knew when I will be able to ween off of some of these drugs. Next Dr apt is July.

[Jora]

Thanks, Marsha. Yes, it is a scary list isn't it. But I am encouraged by reading how effective either drug can be for many people. Like you, I am hoping to reduce some of the other stuff, especially the steroids which play havoc with one's emotions, I find.

I do hope the Anti TNF works well for you. Jo

[farm123]

I'm afraid it is trial and error as to which drugs will work best for you - hopefully one day there will be a test that can be done on your blood that will determine the best drug. The list of side effects of any of the drugs we take is very frightening and you just have to be aware and take appropriate action if you feel/notice any of the symptoms and of course they have to include the worst case scenario.

Humira is a 2 weekly self inject and Enbrel weekly self inject and both need to be kept in the fridge while Rituximab consists of 2 infusions a fortnight apart and hopefully gives relief for at least 6 months when another cycle can be given. The self injections give you more flexibility although a max of 4 hospital days per year is not that much either. Many people find relief on any of these 3 medications. Don't be put off by injecting as they will teach you how to do it and although it does take some getting used to when it gives relief it is worth it. I believe both are available either as pens or syringes.

For me (I am sero negative) Enbrel worked for approx 8 years and have not yet been able to get the same relief from anything else since including Humira and Rituximab. Farm

[Ozzy]

I choose humira simply because of the two I was offered you only had to inject once every two weeks, I hate needles, this worked well for 18 months then I caught a bug and the benefits lessened , now I think they put you on mxt or something to try to stop that happening. I then tried Rituximab but the only benefit I got was a nice cup of tea while it took place, I am sero negative and I had read somewhere that it may not be as effective in me. I am now waiting to start tocilizumab which is a monthly infusion although in the nras magazine they are trying out injections of this, so hopefully if it works I will end up with injections. I had no problems with HaH, but that was nearly two years ago.

[Jora in reply to Ozzy]

Thanks a lot Ozzy. Very helpful. Your cat looks like my new little rescue one, Mabel. She is very therapeutic! Good luck with Tocilizumab. Jo

[Ozzy in reply to Jora]

Her name is Molly and I love her to bits

[Jora]

Thank you so much, Farm. That is all very helpful. Having infusions at the hospital wouldn't be that onerous since I have to go regularly for blood checks in any case. Waiting around for HaH deliveries might be more tiresome. But I now feel much better equipped, thanks to this forum, to have a meaningful discussion with the registrar on Friday, and to reach a decision. Jo

[farm123]

I had not given any thought about deliveries as I am at home anyway - supposed to be self employed but have not been much help for past 18 months - but believe you can have them delivered elsewhere, if your surgery or pharmacist are close, convenient and willing to receive them for you this may be an option. It's such a shame about HaH as when my deliveries were from them for around 9 years I had no problems (I had finished before their current issues), lets hope that they can get sorted again very soon.

[Jora]

Thanks, Farm. That is indeed a possibility, having the drugs delivered to my very helpful pharmacy. I too am theoretically self-employed, as an artist, but these days most of my energy seems to be taken up with physio, hydrotherapy, blood monitoring, and just looking after myself. I hope that new artwork is gestating in me somewhere and that I can get back to my studio soon.

Thanks. Jo

[s7j7e7]

Have just seen that HaH has made the national press (link here to The Guardian article)

theguardian.com/society/201...

and from what the company itself says, it's not going to improve any time soon, so that might influence your choice too.

[Jora in reply to s7j7e7]

It might indeed! . Many thanks. Jo

[Judetheobscure]

Jo - Just to say that I only had one missed delivery with HAH and that was when the hospital hadn't passed on the appropriate prescription. Otherwise they have arrived on time on the correct day since 2008 for Enbrel and prior to that Humira (Humira didn't work, Enbrel did brilliantly). I have since dropped the MTX because the combination was too much for my immune system to cope with. Your Rheumatologist will want to wean you off some other drugs gradually when she's sure the biologic is working well. Mostly the biologic is used in conjunction with MTX because trials have shown this to be the most effective.

[Margot2011]

hi Jora,

I was not given any choice except Humira Adalimumab that I have been taking since Nov 2009. I give the injections myself, twice a month, fortnightly. They are normally delivered by HAH. Have been staying in Brazil and Italy and in both countries I collected the injections from the hospital chemist. The paperwork was ready and all I had to do is sign that I've collected them. No hassle at all. This drug also has nasty side effects but I much prefer to live with the risks than live in continuous pain and disabled. I love life and want to be free of pain to do my many projects. Margot11

[Jora in reply to Margot2011]

Thanks, Margot. All the best for your projects. Ideally, we wouldn't have side effects or pain, but I'm grateful for what help there is.

[Jora]

Thanks a lot, Jude. Very helpful. Yes, I am certainly hoping to reduce the overall drug intake. At the moment, it's up to 200 pills a week. I am positively rattling, not to mention feeling extremely doped.

[2plus2]

Have been on Enbrel and humira now looking at starting Rituximab. Just the benefit of not having to deal with HAH makes me want to change treatment lol.

[Jora in reply to 2plus2]

The problem with HaH does seem to be very variable. Perhaps it's a postcode thing. Take care.

[2plus2 in reply to Jora]

Have just had to wait 33 minutes for them to answer so that I can arrange for my next delivery, (they used to ring me)

I have made a delivery appointment for next week, on last months fiasco of 4 promised deliveries and only on the 5 date did they actually turn up. I'm not holding my breath on getting any before I run out.

Whatever you decide I hope it works out for you. X

[Jora in reply to 2plus2]

Thanks. Good luck to you too, whether on the Rituximab, or in persevering with HaH. x

[Wildschonau]

I am on enbrel without methotrexate. I started in October and I could feel the difference the next day. I am now in remission with no pain or stiffness- my wonder drug. I have had no problem with hah and they have always delivered on time.

[Jora in reply to Wildschonau]

Thank you Wildschonau, that is most encouraging. Very happy for you, and I hope I can be as happy for me! Jo

[tishey]

I think the problems with HAH must depend on where you live as i havn't had any bother with my deliveries, they ring me when i am due one and they have always arrived on the said day and at the time arranged, so i feel very lucky when i read about the troubles others on here are having.

[Jora in reply to tishey]

I think you must be right, Tishey. Some people seem to have no problem at all, whilst others are having a very irksome time. Thanks. Jo

[mille]

Hi Jo, I have had three cycles of rituximab and it has really helped me. I was also worried about the risk of PML but the Senior nurse told me that she has never heard of anyone in Britain being affected by it so that reassured me. I have had no side effects at all with it. It can take a while for it to kick in and in my case it was around 4 months.

[Jora in reply to mille]

Thanks, Mille. So glad it has really helped you and thanks for reassurance about PML. Four months sounds like quite a long lead time, but at least you weren't suffering side effects in the interim. Jo

[Paula-C]

I was given the choice of three, Enbrel, Humira and Inflximab which is an infusion. I didn't want to have to go to the hospital to have an infusion so that one was ruled out straight away so I was left with Enbrel and Humira. Enbrel is taken once, or twice a week and Humira once a fortnight. I was really worried about the side effects of these drugs and with this in mind I decided on Enbrel, thinking that if I did get any reaction I had less in my system.

I felt the difference the next day with Enbrel and was told that I was in remission twelve weeks later and I still am a year and a half later, it really has change my life, I call it my magic potion. When I inject it I look at this little bit of liquid in the vile and I still am amazed at what a difference it makes. I have had no side effects at all.

My consultant told me that if it works it is one of the better ones to have because you make less anti bodies against the drug. I have also read elsewhere that MTX taken along side of Enbrel helps stop us making anti bodies. I am due to see my consultant in about a months time so I will ask about this.

I must say here that what works for one is not force to work for others. I know of people who have had the same results with Humira and I met a lady once who can go 18 months in between rituximab infusions but at the same time I know of someone who after over a year is not getting really good results.

It really is a difficult decision to make and sometimes wish that it isn't put on our shoulders to have to decide which one. I was told after I came to my decision that it was the one that my consultant wanted me to go on. I just wish I had had this input earlier.

I hope that whatever you decided, you get the same remarkable result that I have.

Love Paula x

[Jora in reply to Paula-C]

Hi Paula

All things considered, I was veering towards Embrel, at least in the first instance, for the same reasons you mention. Your post has confirmed this. What a wonderful result. I am really quite excited - and so pleased for you. Thank you so much for your response. All the inpiu has been very helpful and interesting. I hope it will benefit others, too. Jo x

.

[beeckey]

i have tried all 3 they did not work for me.Inow been on tocilizumab for 2 years with infusion once a month it worked well but nothing helps my feet and i do not feel it is working as it did at the start

[Jora]

Thanks Beeckey. I am so sorry Tocilizumab isn't working as well as it did and that you are still suffering in the foot department. Me too. When the pain is in the knees, I can walk through it and move the inflammation around, but with the feet it has nowhere to go. Gravity. Jo

[Footdoc]

Hello

You can ask for Bupa to provide the delivery service if you need it. Enbrel for me works very well, when I get it. Such a difficult choice. I was a medical professional and was in absolute turmoil, even with my medical training I found it very difficult, and eventually told the consultant that they were better placed to make the decision. You choose and it goes pear shaped, well you chose it! This is now done to reduce litigation. Thank the legal profession and their ambulance chasers for that. Good luck. You will get there somehow! We all have, not sure how, but we have.

[Jora in reply to Footdoc]

Thanks, Footdoc. But presumably one has to have BUPA insurance if one wants them to deliver?

Yes, we are becoming a very litigious society. Whatever happened to trust. Thanks for support.

[Footdoc]

Hello there

BUPA are just providing another service that is available to the NHS to use for the supply of medicines to patients at their homes. From our viewpoint, it's free.

[Jora]

Thanks, Footdoc. I will definitely look into that . Jo