Newbie having breakdown
Hi everyone, I’m new here and after having a mental breakdown this morning I wanted to reach out to people who may understand. I’m 33 years old and female.
I was diagnosed in Feb 2024 and I had wide spread pain, inflammation, brain fog and my life completely stopped I couldn’t work or barely take care of my young kids.. it took 8 months to get the diagnosis and I went straight on steroids. I tried sulfasalazine first and had a reaction so went on the methotrexate and that didn’t work either. Spending most of the year on steroids I finally got the go ahead for biological meds - adalimumab. Have been on the combination of methotrexate and abalimumab for about 8 months now and it’s really working - I’m still mindful and have had a 180 on my life but I can say my life feels as normal as it’s gona get - pain is minimal and I can now attend social events again. My recent breakdown is because I have had 2 infections in 5 weeks both requiring antibiotics. First was tonsillitis and now a chest infection. Both times I’ve had no fever or feeling unwell - I’ve had pus on tonsils with a mild sore throat and now a burning slight cough with phlegm.
This has really freaked me out! Because I don’t like that I’m getting infections and not getting the normal signs of being poorly like fever etc. Makes me feel out of control and disconnected from my body- like I don’t know it, as it’s now changed from what I’ve always known. And it makes me worry for the future that I’m immune suppressed and one of the highest cause of death in RA patients is sepsis and pneumonia because of the meds and getting severe infection because it’s noticed too late. I feel I’m spiralling and I wondered if this was a stage other people have gone through ? Where the drugs are working and you feel like your life is coming back but then you have the consequence of a shit immune system and the very subtle signs of infection that need to be red flags. It makes me want to stop the medication or atleast reduce it. But then I’m at huge risk of flares. I feel it’s a reality check of my situation and a reminder of it. I don’t know how to avoid infections when I’m already obsessed with hand gel and common hygiene. I worry I’ve got a lifetime more of these drugs and at 33 I shouldn’t be getting infections this frequent. Can anyone help/share help me calm down and be rational about this.
I think it takes a long time to actually get stable even if you’re on biologic or a medication that works it doesn’t take much to throw it off and it’s it’s unexpected and and I think one of the things I’ve struggled with over the years is the unexpectedness of things I’m supposed to be doing better. I’m supposed to be strong. I’m supposed to be this way and then boom I get hit from left field. Where did this come from now? I have a sore throat. I’m sick that kind of thing. I understand what you’re going through from my opinion I will say that it gets better as the time goes on, it takes it takes a while a long while for your immune system to really kind of find the groove that you need to stay in and you always have to keep in your back pocket. Any kind of big stressor you know might really blow that all you might be good for for months and months and months and months and then oops there’s a death in the family or somebody is hurt or something big and you know on top of everything you have a flare you know out of the blue so it paid you know keep aware of your body and it symptoms. Keep self-aware how you’re feeling you know that that kind of thing just be more astute about how you feel and how your body is reacting but give yourself also some grace to know that you know you’re still in the beginning stage of things and things will settle down eventually good luck.
Hi
. Your concerns are certainly understandable - trust me, there are a lot of people here who get it. First, let me say that it is good to hear that you have found a treatment that is controlling your RA.
Second, I want to note a few things about the immunosuppressant qualities of the medications. Methotrexate is a blanket immunosuppressant. In contrast, biologics target a specific part of the immune system. In the case of adalimumab (Humira) it is a TNF inhibitor. This difference is the reason those on methotrexate had to take a medication break for the COVID shots, so they could build antibodies, while those on biologics did not.
My wife, Kelly Mack (a contributor here), was diagnosed with a severe case at age two, 47 years ago. She has seen just about every medication scenario you can imagine. There is a chance your body will adjust and over time you will not get as many infections. There is also the possibility that the methotrexate could be adjusted or even discontinued to limit the blanket immunosuppression. In Kelly's case, when she switched to biologics the rheumatologist started her without the methotrexate to see if the biologic was enough on its own. She has been through a few biologics a this point, but has never had to combine them. She has been lucky enough that now she has been on a particularly effective one for her for over seven years and her infection issues have dropped considerably (although it is important to always be vigilant). I tell you all of this to illustrate that there are options. We are not medical professionals and can't say what the proper course of action is for you, but working with your rheumatologist should provide some guidance on when or if to make some changes and what the options are. I hope this information is helpful. Please feel free to keep us posted on how you are doing and to ask further questions. Best, Richard (Team Member)
