Positive Amgevita stories needed

[seronegativeRa]

Hello everyone,

I start Amegevita today. The nurse is coming this morning to do my first dose. I was already aware of the info on the Versus Arthritis and NHS sites and had made my peace, knowing that it was needed and the benefits outweighed the risks. However, I have just read the info leaflet, and it has scared the life out of me.

I need this medication. My condition is getting worse and worse. I started out with maybe 1 bad 5 day flare every 3 months or so (pain and min flares were much more often), but now my latest bad flare lasted 3 weeks, and I only went a couple of weeks before the next flare hit. My mobility is quite bad, and I've failed on Hydroxlyroquine & Methotrexate (bad side effects for both); and I have a history of reacting to medication (I used to not read the side effects and then realised it was the meds, hence now, I ensure I'm aware of possible side effects and can monitor for them).

I need some positive stories. I know this drug can be life-changing for many, and I can't carry on the way I am at the moment - so I need some positive stories to focus on so that I can keep my mindset positive.

Thanks, everyone, and have a great day

[Amnesiac3637]

Never a good idea to read anything about side effects before you might or might not have one! In this ‘don’t sue me’ culture every tiny little adverse reaction has to be listed. Where they say one in ten people get something nine out of ten won’t if that puts it in perspective for you.

Once you’ve started on the drug and your body’s got used to it and possibly reacted to something new, as happens, then if you get something out of the ordinary look it up but not before. No point in scaring yourself silly by worrying about something that may never happen - and this just may be the one for you! Best of luck .

[Potatos]

I can give you a positive storstory about Amgevita. I started on Adalimumab in 2006. That is the active ingredient in Amgevita. At that time, it was only available in the brand name Humira. Before starting on it, I was a mess. I could hardly walk, I couldn't pick up a mug without great pain, I was running a high temperature most days, and this had been the case for a year. I had tried methotrexate and sulfasalazine with no real improvement. At the time, my consultant had to plead a special case for me to be prescribed Humira. The side effects at that point were little known so it was a step into the dark. It is the best step I gave ever made. By Easter 2007 I was on a skiing and hiking holiday in the USA. I have been stable ever since. I haven't had any large flares since starting it. I have also had no negative side effects. Once Humira was out of patent I was switched to Amgevita. It has been just as good and the needles hurt less. I still take methotrexate but at 10mg rather than the 20mg I was on previously. I no longer take sulfasalazine, that was stopped very quickly due to raised liver enzymes. I know not everyone is as successful on it, but I will cross my fingers gor you.

[Bookworm55]

Well it’s been positive for me so far! After a painful and frustrating year when the meds I used/tried failed to have any effect at all I stated on Amgevita on 6 June and have felt so much better. It wasn’t immediate - still needed prednisolone for a month but finished that course in August and so far so much better!

The enormous instruction sheet inc a long list of side effects is daunting but as others have said no point in scaring yourself reading about those before you get any.

[Luludean]

the confidence one has on starting a new medication depends SO much on the trust you have in your rheumy team and knowing they will support you if…. you do have fears about or new reactions to these biologics. I found the company that brought them to me , by car , were much more helpful and fast to react than the hospitsl. Give the drugs time … ..

[seronegativeRa in reply to Luludean]

Luludean You are right here, I think may be part the biggest part of my worry. My Rhematology team are fine when you have an appointment with them. However, everything else outside of the appointment is pure hell. Nurses line, supposed to respond within 48 hours, I've left about 10 messages over the course of 9 or 10 months (mostly around side effect questions - an timings of medication) and not once have they responded off their own back (I had a call about a week and a half later, for one call when I complained to their Pals department). There is no generic email address, I have my Rhemu nurse email (who is fine in appointments), and occasionally responds, but again, it's only sometimes. I remember while on Metho, I came in contact with someone with shingles, which on the versus arthtitis website, says you need to let your Rhematology team know, she never responded. Ended up having to go to the GP and was lucky to be able to speak to someone.

Their admin team is a shambles, and trying to book a blood test takes multiple voice messages (because its rare that they pick up the phone), emails and then copying in the pals team (which then gets a response, I don't copy the pals team first, I do it as a final desperation thing). I know this is probably not their fault and that they are understaffed, but it's hard when you have this type of condition.

I'm working with my GP on getting moved elsewhere, further from my home, but apparently much better service. However, they keep saying, well if she's already at x then why move her....

[CallMeSunny in reply to seronegativeRa]

I’ve a similar story and was advised by a GP relation that everyone is entitled to a second opinion. I therefore researched Rheumatologists within a 20 mile radius (which for me encompasses 3 different Trusts) and made a private appointment. I then had an excellent 40 minute consultation + scans of hands,wrists & feet. He recommended an increase of MTX initially for 4-6 months and also wrote to my GP & present rheumatologist who immediately called me in to see her Registar who prescribed the newly recommended dose. £240 extremely well spent (follow up, if I should require, £280).