Postive Amgevita stories needed

Asnina

Hello everyone,

I start Amegevita today. The nurse is coming this morning to do my first dose. I knew the side effect 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 with maybe 1 bad 5-day flare every 3 months or so (pain and min flares were much more frequent), 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). I have a history of reacting to medication (I used not to read the side effects leaflet 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 now - so I need some positive stories to focus on to keep my mindset positive.

Thanks, everyone, and have a great day 

jamieA

Hi @Asnina

I've been on Amgevita since end of July 2021 and it's been very positive for me. I still take sulfasalazine and methotrexate as well but neither had worked individually or together before the medics added Amgevita. Within 3 weeks I could feel a difference and two months in I was able to hand back my crutches. I'm now able to walk my dog 50-60kms a week - albeit with a limp as my left knee needs replaced. I'm not cured but I'm in a far better place than I was. I've not had any side effects that I've noticed. I am aware it leaves me immunocompromised so I am careful in what I do and where I go.

Hope it works for you.

Anna

Hi @Asnina

Here’s a recent discussion about amgevita that you might find useful - some positive stories:

https://community.versusarthritis.org/discussion/60348/adalimumab-and-it-s-long-term-side-effects

Hope it goes well today,

Anna ( Moderator)

Asnina

Thank you very much @jamieA and @Anna

Fif

I started amgevita in July, having been on methotrexate and sulfalsalazine. I still take methotrexate but the sulfalsalazine made little or no difference which is why I was put on amgevita. So far, so good! My hands already look a lot more like normal and all affected joints are more mobile. I haven't noticed any side effects. I hope you have a similar positive experience!

Asnina

Thank you @Fif

I took my first dose yesterday and found the injection more difficult than methotrexate (it hard to get the end of the pen to push against the skin to allow the button to release), but I realised that that's probably because when I did my Methotrexate injection, I was doing exceptionally well (I had been away to Sicily for 3 weeks and was virtually pain-free, only stiffness an issue), wearas recently my hands have been terrible and I went into a very bad flare within about a week and a half of starting methotrexate and only took two injections (1 solo). However, once it was done (painless), the nurse waited with me. I started to feel a little nauseous and dizzy/lightheaded, a bit of a funny taste in my mouth, and I felt some tingling in my affected joints about 20/25 mins after (I said to the Nurse that must be in my head, and he said no, he's seen this before with his patients). I also got hot while the nurse was still with me (unusual, as I'm always cold), and he retook my temp, and it had gone up a bit, 36 something before shot, 37 something after.

He told me to have a lie-down, which I didn't do as I had a ton of work to get done, so I had some lunch and jumped on a couple of work internal work calls (thankfully with colleagues that know what is going on). Managed to last until 2.30 (the injection was at 11.30), and then I had to lie down because I was zoning out. However, it was not that bad, Metho and hydroxychloroquine effects were 100 times worse, when I got home from meth injection had to go lie down immediately. This morning was the first time in ages that I managed to get out of bed without struggling (I don't know if it's a coincidence and my flare was about to be over or if the Amgevita can work that quickly).

I feel good this morning and am about to start work (to clear down my backlog); I also seem to be walking a little better, and getting up and down stairs seems easier than the past few weeks, and joint pain is minimal this morning. They will send another nurse to support me with my next injection in two weeks. After that, I plan to take it at night before bed so that I sleep through any of those effects (if they continue, my nurse told me from his experience, it gets better as your body gets used to it, but he liked my idea of taking it before bed).

I'm keeping positive that this is the medication my body will accept and transform my life. I'll try to remember to come back and post another update in a few weeks.

Thanks again for the responses

jamieA

Hi @Asnina

It's good that you are feeling better already. I inject myself in one of 4 areas in rotation each fortnight - right thigh, left thigh, left stomach and then right stomach. When injecting into my thigh I use the stretch method shown in the booklet and when into my stomach I use the pinch method. I got used to it fairly quickly and the only time I feel a slight discomfort is the stomach injection which smarts a bit for a few seconds afterwards. I get a delivery scheduled every two months when I still have 2 pens left. The logic being that if one pen fails I can still get my injection before the next delivery. I've not had a pen fail in the 2+ years I've been injecting. I bought a small tabletop fridge purely to keep the pens in - I don't want them mixed up with food or accidentally displaced from the fridge.

My rheumatologist asked last year how my pain levels were in comparison with my worst days - 10 being at my worst. I reckon they are normally a 1 or 2 now - not cured but significantly better. I can't remember the last time I had to resort to painkillers for my PsA - whereas the month before starting Amgevita I was on morphine and oramorph.

Hope things continue to go well for you.

Asnina

Thanks @jamieA , I’m also considering a separate fridge. I have an overflow fridge, where I keep drinks, which isn’t opened as much as the kitchen fridge (but still used daily). however, the temp fluctuates (I brought a thermometer to keep next to the meds) , it’s not gone above 8 or below 2 but it worries me that it could go outside of the temp required. I’ll give it a couple of months and then look into a separate fridge, as I’d feel more happier with less temp fluctuations. Also need to start looking at travel options, as I’m considering spending part of my year in Sicily and would need to take 3 months supply with me on the flight.

jamieA

Hi @Asnina

I looked for a fair while before getting a table top fridge. I keep a digital thermometer on the shelf next to my medication. I was thinking of getting one that has an audible alarm if the temperature goes above a certain level but the sensor needs be inside and a cable links it to the unit outside. That means the fridge seal is broken to allow the cable through so I don't think it's a good idea.

I looked at small, portable medical travel fridges that you can carry in a shoulder bag. There's a company called Lifeina who sell a portable fridge called LifeinaBox but it's very expensive.

Fif

I bought a Lifeinabox as we usually spend 3 months of the winter in Spain in a motorhome. The camper does have a fridge but I wanted something a bit more reliable and to carry on the ferry. The only downside is that it will only take 6 pens. They also do a Lifeinabag specifically suited to airtravel I think which would be fine assuming you have a fridge in your accommodation in Sicily.

Asnina

Thank you @jamieA and @Fif

I looked at the Lifeinabox, which looks like a good, somewhat expensive option (I was trying to find out how many Amgeviata pens fit in it. Thanks for confirming @Fif ).

I also looked at the dotcool. But it's still very new but looks like an interesting option (thermometer that looks like one of those tiles that you attach to your keys, without wires). Connects to your phone and monitors the temp in your fridge/whilst travelling. My worry is that it's such a small company/new product that if they don't do well, they will discontinue the app. Currently, you can only buy from Germany, which costs an extra £20.00 for shipping, but I've been told they are looking for a UK supplier, so we may see them be easier to access in the future. The actual device only cost £35.00, which I'd be willing to spend to get the notifications and be able to monitor the temp (especially if you have a bigger supply of meds to monitor).

JC1978

Sorry, a bit late to the party.

I found Amegevita worked really well for over a year, but then I came down with covid and stopped taking my methotrexate and Amegevita for a couple of weeks (I was quite poorly). I then had a massive flare up and when started taking them again they didn't control the flare. Good news though. I had a blood test and it showed my levels of Amegevita in my blood were low, so now going to inject weekly ... fingers crossed I'll get back to how I was before I got covid.

I hope it works as well for you as it has done for me.

Jenny x

Trish9556

Hi all

I'm fortunate enough to not need amegevita so I can't comment on that.

However, regarding a fridge, I have a tortoise that hibernates in the winter (off topic but bear with me), and he needs to sleep at a controlled temperature, not in a box in a garage.

Research advised me that a fridge is the best place and rather than use my normal fridge as many people do, I purchased a table top wine fridge. This also has the benefit of a glass door.

This runs at a constant temperature, the door is opened daily to change the air and we have a digital thermometer on top with a probe inside to warn of temperature fluctuations. Ollie goes in an A4 hay filled paper box and seems to thrive in there. If we need to adjust the temperature a bit we use bottles filled with water or ice block's that you use in cold boxes.

It works, honest! Worth researching ☺️

Love n hugs

Trish xx