Just started Adalimumab for Ankylosing Spondylitis and it's making me anxious. Can anyone help please?

[Comeonpeeps]

Hi all.

I'm due my third injection this Weds (9th Nov). I've had a cold between injections, which has come and gone but left me with cattarh residue. I never suffer with colds and I think I must have picked it up easily due to the adalimumab.

Does the chance of picking up infections reduce the longer you've been on biologics? My rheumy has been contacted several times since I've started with lots of questions and I forgot to ask this!

I had a tiny bit of a swollen gland in my neck yesterday (for one day), but now gone. The rheumy confirmed that you should avoid an injection if you have ANYTHING wrong, even a cold, swollen glands etc.

Again, the cold is long gone (went over a week ago) and the swollen gland very minor for one day and NOW GONE. Considering the fact that I still have catarrh, would I be safe to have my Adalimumab on WEDS?

Did anyone else pick a lot of stuff up at the beginning and then it improved?

Thank you. x

[Comeonpeeps]

Also I've never known catarrh to linger for as long as this, it's so stubborn, I can't get it up, even though it's really loose. I don't feel unwell, even when I had the cold I wasn't unwell with it. Shall I risk the jab?

[KittyJ in reply to Comeonpeeps]

I often have catarrh and I’ve never stopped my biologic because of it. Also never stopped it for a cold, only an infection/antibiotics. It’s winter so there’s alot of bugs around which you would have caught biologic or not. When I started my biologic I had nose/sinus/bunged up feeling for a couple of months then it went after I was on it a while, if you check your pil it will tell you if that’s a common side effect. Try not to overthink things and that every new symptom is your biologic. Hopefully it’ll disappear the longer you are on it 🤞🏻

[Comeonpeeps in reply to KittyJ]

Thank you so much Kitty. It's all very new and I just want it to work without too many problems. But I take what you say on board and relax a little x

[Gnarli]

I'm not surprised you're anxious about your biologic. It's a lot to wrap your head around and I'm equally on edge about it. It's a fear of the unknown in my case. Also on Adalimumab (Amgevita) I've had a stuffy nose since the first jab but it's mentioned in the patient information leaflet so it didn't come as a shock. My fifth jab is due this Friday so not that much ahead of you on this particular journey. Wishing you well

[Comeonpeeps in reply to Gnarli]

Thank you for the reply. Have you really, so it's more of a side effect for you, rather than you picking it up? Yes, not far ahead of me eeek! What condition are you using it for, how long did it take to work (if it does) and how is it helping you?

My first injection helped after 48 hours but only for a day or two, then my second helped within the next day for around 3 or 4 days. So my pain improves for a bit, then comes back but my fatigue is massively better. Hoping tomorrow's jab lasts a bit longer. Do you find this? x

[Gnarli in reply to Comeonpeeps]

I have had RA for nearly six years now. I've noticed much the same effects as yourself. Much more energy and temporary improvements in pain levels but the length of that improvement seems to be getting longer. I am hopeful that this drug will give a gradual but noticeable decrease in symptoms. It's such a relief when the pain eases isn't it? If things continue to improve at this sort of speed I will be very happy. I'm due to see the rheumy nurse next week - deep joy - and hope they're impressed.

[Runrig01]

like Kitty I’ve never stopped my biologic for colds or viral infections. I only stop when I need antibiotics. I too have ankylosing spondylitis and been on my biologic 5.5yr. I’m retired now but managed to work as a nurse on the frontline nhs, where my ward was taken over by chest infections during the winter, and I rarely succumbed to any infections.

It’s important to mention the biologic targets one small section of your immune system. You produce many different cytokines as part of the inflammatory process, of which TNF is just one of them. Your biologic turns the dual on TNF down so it’s much the same as a “normal” person. I carry on life as before just making sure I wash my hands when exposed to anything, which I did before anyway. It’s all to easy to blame the biologic on everything that happens, but the truth is you mail have caught it anyway. I have constant catarrh due to AS affecting my jaw and the inflammation spreading to my sinuses, which I take a steroid nasal spray for, but it’s never stopped me continuing my biologic. A recent study has also found being on a TNF biologic does not put as at greater risk of severe covid either, which is good. I currently take 5 immunosuppressants including MTX and steroids, along with my biologic and rarely get infections. Try not to overthink things, and hopefully the biologic helps with your stiffness and pain 🤞🤗

[Comeonpeeps in reply to Runrig01]

Thank you for the reply. Hello fellow Anky friend! hat's great you managed work without many problems.

Yes I've always washed my hands a lot! Sorry to hear about your jaw and sinuses. I actually blasted my nose last night with my steroid spray (which I used for rhinitis) and the catarrh and dry feeling is much better today. I will make sure that I'm never short of that.

Wow that's great news you rarely get infections considering all the meds you're on.

It's reassuring to read that people carry on with the biologics with no problems, regardless of the concerns.

I was going to start on them before the pandemic but was wary and then they were saying there was a possibilty of having covid really bad, but yes they've down played that now haven't they, not as concerned as they were. I still had really bad Covid this year, ended up in hospital with a suspected clot, as I tested positive for D-Dimer.

I'm feeling much more reassured now -thank you. x

[Comeonpeeps in reply to Runrig01]

Does the Adalimumab work well for you? x

[Runrig01 in reply to Comeonpeeps]

I’m on Etanercept which is similar but I nject weekly. Been on it 5.5yrs, and it has reduced my pain & stiffness. I unfortunately was late being diagnosed as my career as a trauma nurse was always blamed. G the time I was diagnosed, both my sacroiliac joints and my ribs had fused. So I still get pain as a result of the damage, and the muscles are all restricted as the tendons have calcified stopping the muscles moving fully. So the earlier you start biologics to slow progression the better. Good luck with your treatment and hopefully you will see a difference 🤞🤗

[Comeonpeeps in reply to Runrig01]

Ah I see. Apparently can only have this one fortnightly. I'm glad it's reduced your pain and stiffness, a real shame about the fusion and calciication. Can they tell on MRI?

I think I've had it for 15 years and was finally diagnosed in 2018 I think.

Thank you very much. Take care. x

[oldtimer2]

I find that I have much more catarrh since being on adalumimab. I wouldn't stop it unless I had a clear cut infection making me ill. I often have a few neck glands up (especially after being in a social situation) and that's a reasonable body response to minor infections.

It's important, I feel, to have body responses to minor encounters with bacteria and viruses to keep my body up to speed with the bugs in current circulation, so that if I come across them in a larger amount I have some antibodies ready to deal with them.

[Comeonpeeps in reply to oldtimer2]

Thank you for the reply. Wow, another one with catarrh problems, seems to be a common side effect.

If your neck glands are up, has it stopped you from doing your jab, or has the timing been okay?

Does the Adalimumab work well for you? x

[oldtimer2 in reply to Comeonpeeps]

No, I don't stop adalumimab for minor signs of infection. And it has been life-changing! I can open bottles again (mostly) and my hands have shunk back to a smaller glove size. And I don't feel as if I have an awful illness dragging me down all the time.

Unfortunately I also have spinal problems from an injury in December last year which is causing considerable disabling difficulties.

[Hidden]

Hi Comeon peeps

I've been on Adalimumab/ Imraldi biologic injection for 3 yrs and got a few sinus infections early on. There is some research in USA that Humira (which adalimumab is modelled on) can cause sinus problems. However, I feel the benefits outweigh this.

My joints have been much better with Imraldi and my quality of life has vastly improved. The sinus problems calmed down after a few months and were not major.

If I feel I'm coming down with something, I sometimes stretch it out e.g. I might have a 17 day gap rather than stick to the rigid fortnightly injection. I mentioned this to my consultant beforehand. She said it was up to me to judge and I should delay my injection a little if I felt unwell, e.g. loaded with the cold, for example.

That seems to be different from what others are saying here. Obviously something for you to phone/query your rheumatology dept about, if need be.

I'm very cautious so often pause it or stretch it a bit beyond the fortnight. Overall, I think it is an excellent treatment and I'm pain free for most of the year. Winter is still tricky for my joints - but I'm fine otherwise which is incredible compared to how I was before.

Take care x

[Comeonpeeps in reply to Hidden]

Hi Fuzzy, thank you for sharing your story. It means so much to hear everyone's perspectives. So glad you're much better on the biologics and your sinus problems settled down. X

[Hidden in reply to Comeonpeeps]

💐💓

[SummerHead]

I'm on adalimumab and I stop the injections if there is signs of infections. I have made a brilliant discovery recently regarding catarrh and I now use a nasal saline spray twice a day. This prevents catarrh building up and I managed to get rid of a sinus infection that had been ongoing for months. I highly recommend. Just make sure that the nasal spray only contains sea water, nothing else.

[Comeonpeeps in reply to SummerHead]

Thank you for the reply. That's great about the spray, where would I find one with sea water?

[pineapple_head in reply to Comeonpeeps]

Any chemist will sell them. This is an example of from Boots boots.com/boots-saline-nasa...

[Comeonpeeps]

Thank you very much for that. I have a steroid nose spray for allergies and seems to help the catarrh. But am I using the wrong thing?