Hello, I'm new - and anxious about starting Imraldi

Lynette007

Hey, I am anxious about starting Imraldi during this Covid-19 outbreak. I have other co-morbidities that would make me even more vulnerable. I can't get hold of my consultant either, so I have zero support in the first stage of finding the right dose. I'm on the fence about starting the medication until I have heard from my consultant.

Any thoughts😊 from anyone? I have asthma, Psoriatic Arthritis and Chrons disease.

Thank you.

Warm regards,

Lynette

YvonneH

Hi Lynette007,

Welcome to the forum, it’s lovely to meet you, I hope you stay with your forum for a good while now you’ve got here.

It must be very scary, thinking of doing something deliberately to yourself to lower your immune system when we are seeing so much all the time about COVID-19.

Heres the information about your proposed new medication Imraldi. It’s known under other names too, most commonly humira. The active ingredient is adalimumab

https://www.versusarthritis.org/about-arthritis/treatments/drugs/adalimumab/

Before you start taking it you will have blood tests and maybe other screening. You need to be advised of your dose, this is an injection and you get pre-dosed injections so it’s quite clear.

Im not sure what stage you are at, considering what to do, or post tests or awaiting delivery of the meds so it’s hard to advise. It’s also a personal thing, especially now.

Do you know what your risk level is? That might be useful to you. Here’s the link

https://www.versusarthritis.org/covid-19-updates/covid-19-assessing-your-risk/

I hope that helps

Yvonne x

Lynette007

Dear Yvonne,

Thank you for taking the time to send me so much information. You are an angel.

Warm regards,

Lynette

dreamdaisy

Hello, I have been taking humira (the original formula of the bio-similar, imraldi) for over ten years now and it has been effective at controlling disease activity. Many have been transferred from humira to imraldi and all has remained well so I hope it helps you. Good luck and please let us know how you get on. DD

Lynette007

Dear Dream Daisy,

Thank you for taking the time to write.

I'm terrified of starting the treatment during Covid-19. I can't seem to shake it. It feels counter-intuitive to want to protect myself and my family by isolating and then start Imraldi.

I have psoriatic arthritis in my left knee and surgery was cancelled. I also worry about the disease progressing to other joints and walking is close to impossible. I have asthma at the moment and I will have to wait for that to pass first.

I cannot reach my rheumatologist at all - either privately or on the NHS. I supposed in his mind he has told me start taking it and that is still the same message.

I will get there.

Thanks very much for reaching out.

Best wishes,

Lynette

dreamdaisy

Mine began in my left knee, no-one at the time knew what was causing the swelling and two open synovectomies achieved nothing. I started in 1997, the first op was in 2002 (when rheumatology finally and grudgingly gave me some meds) and the second in 2003. By 2006 it was in my right knee and is now in all my fingers,both elbows and all my toes. Due to the lack of meds in those early years I also have osteoarthritis in both ankles, both knees, both hips, both wrists and one shoulder. I was 37 back in 1997 and by the time I was 46 or so I had bought my first rollator. The meth and humira do nothing to ease the pain which is hardly surprising as my joint damage is somewhat extensive. I am now 61.

A friend of mine was diagnosed with PsA ten years after me and to this day is doing far better on just six sulphasalazine tablets per day, it has stayed where it began, in his fingers. He does not understand my experience ofnthe same disease, I thnk he hasn't got a clue. I am so much further along the road than you, my situation is completely different and my experience historical and of no relevance. If you wish to avoid becoming like me and be more like my friend I think you can. The unwelcome guest of covid19 will eventually leave. Arthritis has no manners. DD

Lynette007

Hi there,

Gosh, you poor love. I'm so, so sorry that you were not helped much earlier. PsA is very difficult to diagnose because it comes and goes and travels around the body to different joints. I couldn't rely on my bloods either because my ESR and CRP were hardly elevated. We found out by accident when I ripped my knee meniscus and they saw it on an Xray. I had been having symptoms for close to seven years on and off. I have surgery on my shoulder both a riding accident, both feet had arthritis, my neck and lower back. My neck and lower back were nerve denervation procedures and I now know what was causing them. I was on methotrexate for a while but no one could diagnose me, so I wasn't given more to carry on. It started under my feet, couldn't walk.

Last year it became much more serious and I was so relieved when I was diagnosed. I think I will feel safer to start the Imraldi once my asthma has passed.

My surgeon told me that PsA increases/speeds up OA in the body. They thought it would be years until I needed my knee operating on and it was only 18 months.

Take good care of yourself. I'm sorry your pain isn't controlled. Could you not ask for fentanyl? What is meth? A friend of mine was on fentanyl patches and it helped her a lot.

Bye for now,

Lynette

dreamdaisy

My PsA never went, just stubbornly came. It is one of the sero-negative kinds, which doesn't help, mine began in the wrong joint (also unhelpful), I have very little psoriasis and it damages joints in a different way to RA. My inflammatory markers were helpful as they hit the 170s at their worst so that was the spur to put me on DMARDs but rheumatology were, as I say, reluctant to say the least.

I was born in '59 with eczema (auto-immune inflammatory) and developed asthma (ditto) aged seven so this is merely more of the same which probably explains my nonchalance about meds: inhalers and steroid creams were developed when I was around twelve and they changed my life. My asthma has never gone but is very well controlled with inhalers and of course my suppressed immune system also helps. I still do not have much in the way of psoriasis, again thanks to the meds and as for the pain I am used to it. It worsens then eases to its usual levels. It is far more usual for those with an auto-immune arthritis to develop OA, it rarely goes in the opposite direction with OA coming first. I was refused new knees aged 52 on the grounds of extreme youth and now won't bother because everything else is so shot the benefit will be negligible. The walking aids Inhave used have enabled me to keep what I laughingly call mobility but enable my friends to hum the Laurel and Hardy theme as I lurch towards them. I bought a wheelchair and electric scooter but then decided to impove my lot and began working with a personal trainer - yes, it hurts, it often causes more pain, but my leg muscles are much stronger, my overall stamina has improved, being generally fitter helps me deal better with life. I cannot see hm at the moment so am doing my best to motivate myself.

My parents desperately wanted a child and they finally got one who benefitted from all the junk that skipped their generation. Ma donated the asthma and eczema, Pa the psoriasis. Ma nearly killed me one night when I was eight by having a vase of iris in the house, we turned it into a joke but I wasn't far from dying and there have been a few times since when I wished I had. She had another crack at it by taking me to a faith healer when I was nine who had a number of cats which are now, like flowers, a well-known source of intolerance but back in the early 60s no-one knew. Luckily by the time I was sixteen people were beginning to understand why health conditions ran in families: the filthy family buck stopped with me and Ma never once reproached me for her lack of grandchildren.

So, diseased all life-long, dependant on meds to gain some quality of life but I love, am loved, and have a responsibility to be the best I can for that reason. I am blessed in many more ways than cursed and always have been. DD

PS On here meth is a standard shorthand for methotrexate rather than methamphetamine. Other variations are MTX, MXT and metho.

Lynette007

Yes, getting fit is so important. My next thing is getting a trainer to start with Pilates. Thanks for sharing all of that with me. It is really kind.

dreamdaisy

Hello, how are you doing? I hope all is as well as it can be. DD

Lynette007

Hi there Dreamdaisy,

I'm feeling grateful for the beautiful sunshine and trying to stay out of my head. I put calls out to my rheumatology team and gastro team and I hope someone responds at some point. So far, I can't get hold of my rheumatologist at all to help me with my decision.

I watched Dynamo last night and what an inspiration he is. He has Chron's and arthritis like me and it really moved me how much he worked to get himself better.

I hope you have a lovely day and thank you for checking in on me.

How are things with you? Are you well? Happy Easter to you! xxxx