Amgevita

[FredFudge]

Hi guys

Struggling a little and you lovely lot have helped me loads in the morning past x

Been on a bit of a journey but….

So after methotrexate, then methotrexate and sulfasalazine, lots of steroid injections and tablets, still loads of pain then I got approved for a biologic, amgevita.

I thought fingers crossed this is the good stuff :-)… so I started taking it 14 weeks ago in combination with methotrexate. I did get an initial relief from my aching joints but then it has flatten out.

My blood results have been a bit all over too; high alt (80+) and really low wbc (neurt 1.5), so my methotrexate was dropped from 20 to 10 and then when I saw the consultant at 9 weeks he stopped the methotrexate and was contemplating stopping the amgevita, but didn’t and I was to have blood tests every 2 weeks to monitor, but they still haven’t gone down/up respectively.

I know the amgevita can take 12-16 weeks to work, currently 14 weeks, but I’m struggling….

Very tired and fatigued, flat and low, reduced pain but still have shoulder pain, feeling sick on and off……

Anyone else have the same or any comments? I read loads of people get good/ quick results?

Your help is very much appreciated

[Summerrain14]

I am so sorry to hear you are struggling. I haven’t had quick results with amgevita at the moment. In fairness although I started it in March I have been on and off it so much due to severe infections which had landed me in hospital a few times.

My consultant is wanting to see if we can get me having more than two doses without an infection but is looking at possibly changing my biologic if no improvement in the next couple of months. It is so hard isn’t it the waiting game especially if there are no real noticeable improvements. We are trying to taper my steroids too so we can have a true picture of how well my biologic is working before decisions are made about changing it. I’m back at work too so pacing is a little tricky too. Are you due to see your rheumatologist again soon? x

[FredFudge in reply to Summerrain14]

Hi summerrain and thanks for the reply x

Sorry to hear that, so did the infections start when you started the amgevita?

Or just coincidence? I guess hard to say?

I hope you get a few stable injection and get some relief; either with amgevita or another….

I’ve had little relief, but very slow and feel flat/tired/fatigued just generally flat and muzzy. Don’t feel right😵‍💫

I’ve rang the rheumatologist secretary today, so waiting to hear back. I know he’ll just say wait until get pass 16 weeks, just my bloods have been a bit messed up since starting it, dropped the methotrexate so don’t feel as sick but still the same.

Struggling to know what to do?

[hopegalore20 in reply to FredFudge]

Hi FredFudge,I was on Methotrexate for a period of time, about a year or so.

I took this medication both in oral form and by self-injection pens straight into the blood stream, combined with 60mg of Prednisolone.

I have dermatomyositis and struggle a lot with muscle weakness and pain with severe skin itch.

During this time I was also receiving Biological Infusions (Rituximab).

However, for my condition these medications did not control the muscle pain nor skin itch.

I have since changed medication a few times now, presently on Tacrolimus, but my condition is still very active.

I hope the journey that you are currently on with your meds leads to a good outcome.

Stay Positive and Stay Safe.

[Blodynhaul]

Hi FredFudge, very sorry to hear of your situation. I'm also new on Amgevita (Adalimumab) - 10 weeks in and no improvement. Also halfway thru 3-week course of steroids without much relief either, which is surprising and so disappointing as still in so much pain daily. I can understand how it's getting you down. I'm not on another drug with it like you are (was on MTX for years but it got too toxic & then leflunamide worked for a few years but stopped working beginning of this year). I had a test to see if I'm producing in antibodies stopping the Amgevita working, waiting for result, meanwhile carrying on with it. I suppose I'll be on a different biologic if it's not working, but it all takes Time and horrid prospect of continuing pain & debilitation in the meantime. My worst pain (agony first half of the day at least) is in shoulders, hands, wrists, elbows, neck. Fingers/hands/wrists are terrible ongoing issue. My legs are a bit better currently, which is something. My bloods were mixed up too, but won't have another test till after the steroids (but so disappointed even they haven't done much!). Thinking of you & hope things can improve soon for you Fred.

[FredFudge in reply to Blodynhaul]

Hey and thanks for the reply

Sorry to hear you story too, long hard road.

Interesting about the antibodies test, I’ll ask the question.

I’m not on anything other than amgevita now, stopped the steroid tablets and injections prior to starting amgevita and stopped methotrexate too due to my test results; high liver alt and really low white blood count. I have had a little relief from the pain, about from the first two weeks anyway, and nothing else….shoulder pain is the worst. Also feel like I have no energy and completely flat, stomach pain and lower back (kidney area).

Don’t know what to expect and was holding out for a biologic!

Rang the hospital but just waiting for them to get back to me 🤷‍♂️

[Blodynhaul in reply to FredFudge]

Thank you FredFudge. I'm no expert but sounds better to be on just one thing sometimes, do hope it kicks in! Yes, worth asking about the antibody test. I mentioned it on this forum recently and impression I got is that an antibody test isn't routinely offered to see if you're stopping a biologic working. Hope your bloods improve. Can empathise with shoulder agony. I'm lucky I don't have stomach pain or kidney/back pain & energy level not bad. For the rest of it, like you, was holding out for a biologic. It's pretty demoralising with no sign of it working! I try and remember there are many other options, but it's the time element having to wait to see what works is the daunting thing. Keep at them and keep going!