I take Simponi 100mg injection every 4 weeks, this is my second biologic as I was previously on Humira but it stopped working (I have AS). I constantly get eye infections and bacterial skin infections and currently have an access on my arm that is extremely painful. I have antibiotics from the doctor, but had to go to A&E yesterday as it was getting worse. I feel like they think I am a hypochondriac and feel like they don’t understand about biologics and infections?? I never get a temperature and have had several infections, one being on my nose wound after MOH’s surgery. I am fed up with having to explain and being made to feel like I’m neurotic!! Anyone else????? Sorry for the moan!!
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Km27
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Moan away! You’re not a hypochondriac or neurotic and I suspect you saw medics who are not well versed in RA and the medications used.
RA is a complex and difficult disease to treat and some of the drugs prescribed by consultants are not taken by the general population so it may be that you have presented with signs and symptoms that have not been linked with your disease - the holistic approach is somewhat lacking in the NHS (I have been a senior nurse in it for years) - and your medical notes have not reflected this.
If it helps, write a summary of your treatment and drugs (or get a print out from your surgery) and if you have to go to A&E again let whoever treats you look at it. It may inform them better and it reduces your stress levels!
Hope your abscess is less painful and you feel better soon.
Thank you so much for your reply. I took my Simponi info with me but they just looked at me like I was neurotic, it’s like they think I’m telling them how to do their jobs. I have now been left with an open wound and all the worry that comes with the risks of infection. I am keeping it very clean and using my alcohol wipes regularly, if I find it isn’t healing I will call the rheumatology helpline. I really appreciate you taking time to reply. Thank you!
SIMPONI can lower your ability to fight infections, do you also take methotrexate and folic acid tabs ?
I was on a Biologic injection every two weeks and 25 mg (10 tabs) methotrexate once a week and 5 mg folic acid tabs every day (except when having methotrexate ) which helped against infections.
The combination of the Biologic and methotrexate did not agree with me so methotrexate was gradually reduced down but still had 5 mg folic acid tabs.
Eventually I ended up just on Biologic injection every two weeks and the folic acid tabs.
I was asked to stop taking the folic acid as I was no longer taking methotrexate .
Which I did and after about 5 days I stated to get mouth ulcers, so then started taking folic acid tabs again and this cleared up the infection .
Again after a year or two to try stop taking the folic, and again the infection came back which disappeared after taking the folic again.
You can end up with too higher level of folic so I now take only 5 mg every 2 days which appears to keep the level about right and infection under control.
It is known that Biologics do lower your ability to fight infections .
I have ask but no one has suggested what you can take to counteract it .
Sorry to hear you’re having these issues, it’s no fun on top of having RA.
I was only on Simponi a few months, had lots of sore throats annd colds and then ended up in hospital with a bad chest infection after my fourth injection. It was stopped after that. It put me off having a treatment that is monthly, rightly or wrongly I had the perception that must be be giving me such a big ‘hit’ due it lasting for a month.
With regards to cuts/wounds, I swear by Iodine dressings to prevent infection. I cut them to size and put it under a plaster or dressing. If it helps I use ‘Iandine’ from Amazon.
thank you for the reply, I had all these infections with Humira! Chest infections, colds and sinus issues too, but with the Simponi it’s more bacterial infections mainly around my eyes. I have been back to my gp today and he has doubled up my antibiotics and told me to go back to A&E Friday if no change!!! I’m going to call the rheumatology helpline tomorrow at my hospital and see what they have to say. Thank you again for your message and I hope you find the right meds for you! It’s like choosing between being able to live a near normal life and suffering in other ways isn’t it? I always try and think I’m blessed in lots of ways and try and block out all the bad stuff!! lol!! X but sometimes it’s difficult x thanks again x
You are not moaning and as others have said you should be listened to. Maybe you need to change your biologic. Sometimes it takes a while to find one that suits you in terms of its efficacy and the side effects that can potentially come with it.
You clearly have difficulty in fighting infections. Some potent supplements would possibly help you with fighting infections, but a discussion with your rheumatologist to see if you could try an alternative may be a good place to start. Good luck xx
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