Waiting for biologicals to kick in!

[Carolsos]

Hi guys, hope your all keeping well. Well as you know I started Humeria a month ago and it has been an agony time! I have been in so much pain all over, especially my hands and wrists! I phoned rumey nurse up on Thursday and then phoned back on Friday. I asked for some steroids or a steroid shot to help with the pain and inflammation! I was told I could not have anything until after 11 th Nov when I see them I have to say I was taken back about this. I have been suffering at work. My hands, fingers, wrists are in agony and as I work in a kitchen I have found it very hard last week! I was told to up my codeine to maximum and get some frozen peas to put on my wrists. I am finding my pain medication is not touching my pain, hence why I rang rumey up! But it looks like I will have to just grin and bare it!!! If it gets too bad I will have to go on the sick which I definitely don't want to do. I am on naproxen twice a day and codeine 4 times a day, also am taking paracetamol too. I am also using voltarol. I cannot use my wrist braces at work. I cook breakfast and wash the dishes, also clean fryers and prep food. Anyone has any tips on pain relief? I have tried tens machine and not for me. The fatigue is unrelenting also. I feel like I am back where I started in 2013. I felt so bad on Thursday I was feeling sick with the pain and didn't know what to do for the best. Even when I am sat at home the pain in my wrist is unbelievable! I am on hdy, lefluomid and Humeria now.

Thanks for listening guys, rant over.

[Rachhfost]

I’m so sorry that you are in so much pain. These meds do act so differently for us all. I was like you when I started Humira, methotrexate had stopped working and I was in agony with knees, hips, elbows and ankles. Within hours of my first humira injection I felt some relief and most of the swelling disappeared within a couple of days. It was a miracle. Do keep in touch with your rheumy team as it may be that this is not the right med for you. Hope you get some relief very soon.

[helixhelix]

Hope it kicks in soon! I was on the point of giving up at 11.5 weeks when mine started working (Enbrel), and has been great even since.

[Hidden]

I’m so so sorry it sounds horrendous for you at the moment. I do really hope it kicks in soon. I don‘t quite understand about having to wait for steroids though? I‘m still waiting for adalimumab but was told I could have steroids in the meantime if needed (trying not to but the option is there). Why on earth not? Did they have an actual reason? You sound in so much pain!!!Can the GP provide steroids in the meantime if rheumatology are being awkward? Or can you ring again and get a more helpful member of staff on the phone?

I hope you can get some pain relief soon and that the Humira starts to work its magic xx

[Mmrr]

I think I would be writing to my rheumatologists secretary asking for an explanation why I cannot have steroids until November, suggesting a reply is expected within 10 working days.If no response I would raise a complaint.

[Marionfromhappydays]

I've been in the same position (well sort of still am) and my rheumatologist did offer steroids (I declined but thats just me).

I would ask them specifically why you can't have them, I know the steroid injections i was told i could only have a certain amount per year 🤷‍♀️

Hope your injection begins to work soon x

[Carolsos]

Reason I cannot have any steroids is it would mask if the biological is working or not and as it's very expensive and she repeated this twice to me! If it's not working by 11 th Nov I will come off it. If I have steroids now it would mess up with their findings! I don't agree with being in pain though, I mean she could have given me a few weeks steroids to keep me going until 11 th November! And if it doesn't work I will have to wait another few months to get sorted again!! I came off mtx because it had stopped working and have been off it for about 3 months or more. So I really need this biological to work very soon. She also said when I saw my rumey nurse that I was in a lot of pain and had lots off swelling then and now it's much worse! I will see how I am in this week and ring up then again. But I have no idea what will help me?? I really don't want to have time off and even if I do will my doctor write me a sick note after a week, and that is even if I can get seen by a doctor! Thanks for replying. Take care everyone. 💗

[Mmrr in reply to Carolsos]

Many people, myself included take steroids with advanced therapies. I'm now on my 5th advanced therapy, the best so far and am tapering my oral steroids down. Not sure what your rheumatologist is thinking?

[Blodynhaul in reply to Carolsos]

Hi Carolsos, so sorry for your situation. It sounds similar to mine. I've 9 weeks into Adalimumab/Humira and no improvement yet. Agony daily. I begged for steroids months ago after Leflunamide stopped working, before starting a biologic as the Rheumy wanted to see if the Leflunamide would start working again in the meantime. They gave me a course that helped a fair bit, but not as well as hoped. As still so bad on the biologic, I pleaded for steroids again a few weeks ago, but as I was having an Antibodies test (to see if my body is producing antibodies stopping the biologic working) I had to wait till having that test before they'd give them. Did you have an Antibodies test? If not it sounds like you should. I haven't had the result of it yet, but told to carry on with the biologic for now and am now on steroids. The even worse thing is that I'm 4 days into steroids and they aren't working either! can't believe it or understand it. Really feel for you with your hands-on work & not wanting to stop it, but it being such a struggle with all that pain. Can sympathise. I can't do any of the farm work now, nor look after myself or ill partner, but still keep thinking something will work - BUT - like you said - how long will it take? can't take the prospect of months more like this waiting for another biologic to work. Sorry to go on, but really wishing things work out for you and you can get steroids quickly - but do check if you've given a blood sample for an Antibody test - if not - why not. Take care.

[sylvi]

I had to give up work thanks to RA darling so i know where you are coming from. I was a mobile catering assistant which i loved and i haven't worked since.xxx

[Jacey15]

It took 5 months to work for me. Hang in there x

[Emye343 in reply to Jacey15]

Hi Jacey15,That’s encouraging- I’m 3 months in now and nothing yet with humira. Due to see my rheumy on the 16th.

[Jacey15 in reply to Emye343]

I came off it for a while due to several infections and it took 5 months the second time too. It's made such a difference though. Good luck for the 16th.

[Blodynhaul in reply to Jacey15]

That's so daunting! I'm 9 weeks in on Adalimumab/Humira not working yet, but can't contemplate potentially months more like this, living on codeine and anti-inflamms - and now steroids not yet working either! But still feel something will work, just hope it's soon. Great to hear it worked for you in the end, thanks!

[Fra22-57]

I was told it would take up to 12 weeks to start but mine started at about 6 which was a relief.still not 100% but tons better.hope yours starts any day now.it did take 4 biologic before one started for me thou

[Durrell]

I’m in agreement with GIF, speak with your gp even if it was just a short course to get the inflammation down. My gp has done this on a couple of occasions in the past, of which I was extremely grateful at the time... lm surprised your rheumy has left you for that time, my Rheumy would see us every 4 weeks if starting a new drug to see how we are coping with it etc!! I wish you all the best with this, but Yes these drugs can take time to prove themselves, however for me, I have tried several & if they didn’t work from the start then they didn’t work but we are all different, no one drug suits all...,

[Angels54]

Oh really feel it for you as I have experienced that pain , my friend went on Humira and found it to be amazing, I hope you get relief soon 👍

[Carolsos]

Thank you everyone for your replies, about a week now I got a fungal infection on my tongue, covered in spots and burning! I am pleased to day it's clearing up. I went to the chemist and he gave me something and I also rang 111 for advise. My biological drugs have started working at last, I am still in lots off pain and am taking lots of painkillers, but not as much as before! My hands and fingers are still on pain and my left wrists is with shooting pain running from my elbow to my wrist! But at least it's a start! Take care everyone. 😊

[Baili]

I was on Humira 2.5 months before we realized it wasn’t effective, and I needed a different category biologic.For psoriatic arthritis. I had to stop for financial reasons in the U.S., have been in agony. Starting a 4th biologic. Rheuma dr here is starting me on steroid pills till the biologic is effective. I hope they relieve me, and wish u good luck.