Adalimumab and suppressed immune system.

NeilF

I've had PsA for about 8 years. 2 years ago, I started on Adalimumab injections. Since starting on Adalimumab, it's like a don't have arthritis. Most days I forget I have arthritis, that's how good Adalimumab has been for me.

But, I've never quite understood how immune suppressed I am. My PsA is in my toes, feet, ankles and knees and recently one of my feet started to swell in the morning with a small blister between two toes. By the evening, I was in A&E, with one massive foot covered in blisters. I'd got a bacterial infection. 3 nights in hospital and IV antibiotics started the process of fixing my disgusting looking foot.

I don't know if the Adalimumab suppressed my immune system to a point where this was inevitably going to happen every now and again.

Has anybody else had any experience of their immune system not working right on Adalimumab? I just want to understand if this was a random one off event, or common for people on Adalimumab!

jamieA

Hi @NeilF

I've been on adalimumab for almost 3 years now and take it with both sulfasalazine and MTX for my PsA. I can't directly answer your question as I haven't had a skin infection but I've always been aware of the risk that the cocktail of drugs I'm on may cause my immune system to be compromised. Probably due to covid I'd experienced multiple severe chest infections and pneumonia in the year before being put on adalimumab and MTX so was very wary as to where my compromised immune system would leave me due to MTX and adalimumab. I'm sure you are aware that adalimumab suppresses the TNF alpha protein which is part of the immune system dealing with infection but is also a cause of our joint inflammation if it gets out of control as in PsA.

I've changed my diet to exclude all the things we're directed not to eat. I only use anti-bacterial soap and carry a bottle of hand sanitiser with me. I also try to avoid large crowds. I do have a dog and so I'm exposed to all the downsides of that but I just try to cut out as much other risk as possible without living like a monk.

I hope you've recovered ok.

NeilF

Hi @jamieA

Thanks for the response.

I don't think I've been taking my susceptibility to infection serious enough.

I'm reassured, in an odd way, by your message that you are taking simple measures to avoid infections and this is something that I should be able to take on board.

What food have you been directed to avoid? Apart from things like raw meat and fish, what else have you been advised to exclude?

Neil

jamieA

Hi @NeilF

I avoid soft cheese like brie and camembert, mould ripened cheeses, blue cheese, feta, goats cheese, unpasturised dairy of any kind, pate, raw egg products like fresh mayonaise and any undercooked meats or fish. So my meat and tuna steaks you could sole your shoes with! Rice that's been cooked and then stored overnight I avoid as well.

I still find plenty to cook and eat so it's not as bad as it looks.

Ben81

Hi @NeilF

I have been on MTX for about 4 years, which has worked well for my PsA. I see the Dermatologist for my skin and the Rheumatologist for my joints and have different prescriptions from both, although the MTX supposedly can work well for both.

The Dermatologist has booked me in to discuss me moving to adalimumab for a skin area that is particularly bad and I am unsure whether to start taking it or not.

Although the MTX is working, I would like to come off it, as I don't like taking so many pills and have been picking up awful colds more frequently than I ever have done in the past. Although I appreciate that is the trade off for the good it does my joints. The Rheumatologist suggested that I might be able to reduce or stop MTX if I do go onto adalimumab for my skin, as it works for joints too.

I am nervous about injecting myself - what is that like? Is it difficult to do?

I am also concerned about how suppressed my immune system will be, taking adalimumab and MTX. I think, like you, I haven't taking my susceptibility to infection serious enough. @jamieA, it seems like you have, and I can take inspiration from that. It may sound daft, but I haven't really considered my diet and I haven't been advised to change it by the consultant at any point while on MTX. In my head, when I think of immune system, I just think about colds / flu / covid etc and don't really consider anything else. I feel like I have been very naive.

Any advise from personal experience on adalimumab would be appreciated.

Thank you,

Ben

jamieA

Hi @Ben81

I fully understand your wish for reducing your pill intake - prior to (probably) contracting covid 4 years ago the only pill I took was the lowest level of blood pressure tablet once a day with no other recurring health issues. I ended up with psoriatic arthritis, pneumonia 3 times and a heart issue in the space of 7 months. My treatment for PsA is actually a combination of sulfasalazine, MTX and the adalimumab biosimilar Amgevita - they work synergistically. I also take 3 different heart drugs daily so all in all I'm taking 101 pills a week and injecting adalimumab every 2 weeks. Last year I talked my rheumatologist (reluctantly) into reducing my pill intake by reducing my sulfasalazine and I subsequently had a flare - she was very much 'I told you so' afterwards. I know everyone is different in their response to the drugs they take so your experience may well be different.

My Amgevita is provided as an injection pen. I was given some training before I started it and a comprehensive booklet from my rheumatology clinic. The pen is easy to use and looks like an epipen if you've seen one of them. The needle is withdrawn so isn't seen. You push down the pen onto your skin then push down on a button at the top of the pen and the needle make a short impact through your skin. It's slightly uncomfortable but I don't find it painful.

Regarding food I received information from the NHS rheumatology clinic which detailed the food to avoid and also hygiene tips. I've not had an issue in the 3 years I've been on adalimumab.

I was taking sulfasalazine and MTX when Amgevita was added. At the time I could only walk using elbow crutches, I couldn't close my hands and had limited movement of my shoulders. Two months after starting Amgevita I was able to hand back my crutches. I now walk my dog 50-60kms a week - albeit with a limp as the PsA had damaged my left knee in the first year before Amgevita to the point I need it replaced. My rheumatologist always asks how my pain is on a scale 1-10 with 10 being my worst before Amgevita and I now reply it's a 1 or 2.

I hope it works for you.

NeilF

Hi @jamieA and @Ben81,

As @Ben81 asked about what’s it like on Adalimumab, here is my story.

I was taking Methotrexate, along with Naproxen for the inflammation and Omeprezol for the side effect of the Naproxen. This was helping with my psoriatic arthritis but it wasn’t perfect. At this point, my arthritis was in my toes and ankles but i was getting increased pain in my knees. My rheumatologist suggested adding Adalimumab because even with the MTX and other drugs, my arthritis was getting worse.

I hate needles and injections so i was more concerned about administering the Adalimumab than taking another drug. The auto injector pens are really easy. All I have to do is push it down onto my thigh and it clicks and the needle goes in and the drugs is injected. Very little discomfort. I took it this morning so I took some photos which I've attached.

After a few weeks on Adalimumab, i had a regular liver test and there was an issue. I was taking exactly what my consultant said but my liver couldn’t cope. The doctor called me and asked if I was going yellow. I stopped the drugs and only restarted the Adalimumab. No more methotrexate ever again. My consultant wasn’t concerned about the long term issues associated with my liver after the incident.

So now i inject once every 2 weeks and it’s like i don't have arthritis. It works really well for me.

I do seem to take longer to get over a bug, and i did once end up in hospital with a skin infection due to having a reduced immune system, but on a normal day, i can basically do anything. It really works well for me and I've been on it for 2 years now.

The NHS started me on a brand of Adalimumab called Imraldi and recently I changed to Hyrimox because it’s cheaper for the NHS and the epi pens are identical and they seem to be exactly the same to me.

I would recommend going for it. I has worked very well for me and I don't regret taking it

Neil

Teapot

I have been on Methotrexate and biologic Benepali for a number of years. Last week my consultant changed me from Benepali to Adalimumab which I am to take every 2 weeks but still inject my Methotrexate once a week. When he did ultrasound I have inflammation in my joints especially toes and fingers. Not sure when I will receive the new injections does anyone know how long the wait is from consultant ordering and my receiving them. Hopefully this new one will help with my feet and fingers. Enjoy the rest of your day and the nice weather.

jamieA

Hi @Teapot

I'd guess that things will probably be different in different health board areas. In my case I went through the testing at the start of July 2021 and the delivery of the adalimumab biosimilar Amgevita was 28 July.

Arciere

hello

as a sufferer? of PsA, I have been prescribed Yuflyma (Adalimumab) via the pen method.

I think I’m 4 months in. Movement wise I am much better although still have hand and feet pain. The fatigue is probably worse - might be a coincidence, but the drug has not solved this for me.

Immune system wise, the family all had a sickness bug recently and I was scared how I’d cope. Oddly I just felt rough for a few days but avoided vomiting etc. I haven’t changed any other aspect of my life etc

Hope this helps

jamieA

Hi @Arciere

I'd agree that fatigue is a problem. I guess it's at least in part due to the amount of physical and mental energy expended on dealing with arthritis - focussing on how you walk, take stairs and compensate for painful or weakened joints. I used to be a sound sleeper - now I normally wake 2-3 times a night. I also get really fatigued either the day or two days after my MTX.