Advice on taking biological therapy and having chest infections and viral infections.
Hi everyone,I have just seen the nurse and I have another infection, I am struggling with everything.
In less than a month I have another infection, 5 infections and third lot of antibiotics, yes I need treatment but they have given me Golimumab which is a new medication they told me and don’t know the long term side effects.
On the leaflet it says if repeated infections then I may not be prescribed, they don’t listen to me and seem to be clutching at straws.
I am in the uk.
What can I do?
I can’t keep getting infections and can’t keep avoiding people.
Any advice as talking to them they say I have to have this, I have no choice.
Thank you
Jan
Hello I have just been diagnosed and started Humira 4 months ago and I have the same issue. UTIs and infections, respiratory, and since I always have infections I can't even take the medication as scheduled. So now my liver enzymes are elevated also so I am seriously thinking that I may stop it. The thing is I think it did help and now I am exercising more and eating right. And staying away from stress as much as possible that is my trigger. I will let you know if I find any alternative or what happens when I stop. I will be the guinea pig.
- so sorry that this message took a month to get a response. We very much appreciate your input and value your experiences related to topics here in the community.
I'm truly sorry to hear about the challenges you're facing with your health, especially with the complications arising from your treatment. It's apparent that you're making efforts to manage your condition through lifestyle changes, though, and it's commendable that you're taking steps to prioritize your well-being. Kudos!
Considering the concerns you've raised about infections and elevated liver enzymes, it's crucial to continue to monitor these issues with your healthcare provider, which I am sure you are.
Stress is a very big trigger for many with chronic illnesses as chronic stress puts you at a higher risk for worsening disease processes. I certainly hope that you are feeling better through the exercise and eating healthier these past few months. Please check in and keep us updated - we are hear to listen. Warmly - Rebecca (community moderator)hello sorry reply is very late,I wasn’t on that but that’s what rheumatologist wants me to take. I had those infections with inflixmab.
Did you come off it? How is your liver now?
I am not eating right and difficult to exercise.
How are you doing now?
Take care
Hi, Jan58.
I have both Multiple Sclerosis and AS. It's not fun. However, I am learning how to deal with both. The biologics for MS are awful - like feeling like you have the flu every day! Never changes. I got sick all the time. My last med gave me multiple sites of skin cancer. I quit.
I started an anti inflammatory diet. It started helping. I was following the diet well and I ended up finding out I had the HLA-B27 gene. No labs or x-rays or MRI's done. then covid began. Because I already had two autoimmune diseases, I didn't take the mRNA vaccines. Altho I wasn't on any meds for AS, I knew I needed vitamins. I started Vitamin C, Vitamin D and Zinc. Then found out that N-AcetylCistine protected lungs and was especially helpful for brain and immunity. Now that I am on Cosentyx, I have less pain. What really has surprised me is that I haven't gotten sick in almost 2 years. For me that is a miracle. I always got sick.
Steroids wear down your immune system. I try to avoid them as much as possible.
Do your research on the vitamins and see if they might help you.
Take care,
Lisa
,
Thanks for the update.
I will continue to keep you in my thoughts for some much-needed relief.
~Doreen (Team Member)thank you Doreen.
I appreciate it.
Take care
Look after you
Jan x
Hi
,
I'm sorry to hear that you have been struggling with a lot of infections lately. I'm taking Enbrel myself and actually as I write this I am getting over a throat infection too!
It's quite a tricky one as biologics can be really helpful with managing AS but at the same time as they weaken the immune system they do leave us prone to getting infections more commonly and it often takes a little longer than the average person to recover too.
My body has definitely taken up a new habit of getting infected a lot since I started my treatment. But as my pain and stiffness has been reduced so much from it, I try to see the more frequent infections as an unfortunate side effect that I kind of have to accept. My infections usually tend to occur in the throat / chest region so I make sure that I stock up on things like soups, teas, manuka honey and other stuff that is helpful during these times.
Do your infections tend to reoccur in the same area or is it a bit more spread out?
Hope you make a speedy recovery and your body blesses you with a break from infections after this one!
Sending love,
James (Community Member)hello Shayh2u thank you for your message.
I have just read your post, it’s morning here in the uk.
I understand about quitting your medication but I do think we need to take something but what I don’t know.
I only had two infusions and had to come off them, inflixmab but I had around five steroid shots in the past 18 months which I know can leave you open to infection.
I used to go to the gym between the ages of 30 to 40 I used to go after work so maybe the AS was hidden from doing that,
I am 64, I was told I probably had it when I was a teenager or in my twenties but I didn’t know, I had backache and I had a car accident and have osteoporosis of my spine but that only got diagnosed in 2012.
I also had an eating disorder in my teenage years.
I think with you bern active it took awhile to get diagnosed like me.
I try to eat healthy but food is so expensive here it’s crazy and have put a stone on, I am under 5ft and it shows.
Yes no one understands unless they have it.
I don’t have the Gene.
I have seen countless counsellors and given up now, I could do with peer support but here there isn’t any.
Stress well that’s very hard I do my best myself relaxing but my husband is Mr Stress big time.
He has depression/ social anxiety and ADHD it’s very difficult, he is my caregiver so yes stress is a big thing he try’s his best bless him but really hard.
I hope seeing a different rheumatologist for you really helps, let me know.
I will do
Take care
Hugs 🤗
Thank you for sharing with us on how your journey is going. I know this step can be the hardest stopping Humira. I hope it goes well and please let us know how you are doing. I think with the steps you managed you will do great.
Sending you positive vibes your way,
Nicky (Team Member)
Oh
- I am sorry you cannot rid yourself of getting infections. Golimumab is Simponi Aria (brand name). It helped me a little. I don't remember any side effects but it was my first infusion ever - used it for about a year. All biologics can weaken your immune system and infections can become a real issue if they continue. I know I was told I wasn't able to use biologics when I had an infection and was taken off them temporarily. Here is a link to biologics and their goal. "Several biologic and biosimilar drugs used to treat axSpA have a boxed warning, the strictest warning from the FDA. They have this warning because they can increase your risk of serious infections and certain cancers." https://axialspondyloarthritis.net/treatment/biologics-biosimilars They are not a quick fix. I so hope this biologic helps, but it takes time so stick to it and you will hopefully begin to feel better. Thinking of you and wishing you better health. Rebecca (community moderator)
