Biological Drugs

[conniegraham]

Hi everyone,

Just an update on my biological drug.

I've now been injecting the bio similar Amgevita for 10 weeks along with 10mg of prednisolone daily and so far I haven't really seen any improvement. Is this normal? Is it too early to say, or is that just wishful thinking?

I'm waking up every morning in a lot of pain still and i'm having to rely on my family to help me with the simplest of tasks.

I've got an appointment on August 19th with the Rheumatoid nurse, should I wait? Or should I contact my rheumatologist?

Many thanks,

Connie

[allanah]

Hi most rheumy units wait around 12 weeks before they say you will see a difference that the drug is working. And to see if its successful can be longer . Personally I would wait the couple of weeks which is mid august and around 12 weeks for you, and in the meantime get good pain killers that help. My gp was great for that advice. Then get a list of your problems and worries ready for the rheumy team . Normally with steroids too it helps as you know.

But if you are in severe distress then yes obviously call the team xxx good luck , let us know how you get on?

[conniegraham in reply to allanah]

Thank you that's so helpful! Will take all of this advice on board and try keep positive.

[Ms-D]

Morning. Im in a similar boat with benepali. Been taking it since April but now 15 weeks on the pains more intense. Im not given steroids to take either but taking strong pain relief to help. Wait a few more weeks to see how it goes and when you chat with consultant maybe they can recommend something else for you. Hope you feel better soon x

[conniegraham in reply to Ms-D]

Hey there, thanks you for your reply. Maybe I'm judging it too early then. I've heard great things about biological drugs so I think I was hoping for less pain by now. Will definitely start taking painkillers. Hope you start to feel better soon too xox

[Ms-D in reply to conniegraham]

I hope you start feeling well soon x

[Knit12 in reply to Ms-D]

Ms-D I’m on week 10 of Benepali and it is not working either. Got a steroid injection 3 weeks ago and it did nothing. I’ve got a telephone appt on 17th Aug with rheummy nurse as they wanted me to wait a bit longer, but when you know it’s not working and you can see your joints getting worse and the pain is incredible I’m thinking of contacting them again, maybe just need to bite the bullet

[Ms-D in reply to Knit12]

Thank you that makes me feel better knowing im not being paranoid. I think after 9 weeks it stopped working but no steroid has been given to me so im relying on pain killers that either zonk me out or dont touch the pain. I hope you get the answers you are looking for x

[Knit12 in reply to Ms-D]

Thanks for coming back to me. I must admit I kept some of the steroid tablets that I had been given before. I stopped them as my skin started breaking out, but right noW I also pop one every 4 or so days. Only got 4 left so Im rationing myself. Also trying CBD ointment, not sure if psychosomatic but it mad me feel a bit better, jury still out on that one

[Ms-D in reply to Knit12]

How are you? Feeling little better? My alt levels have gone up to 79 from 34 in March. No idea what will happen now. Ive tried cbd oil too but didnt do anything.

Take it easy x