u/7648021

Has anyone else experienced this? If so, what helps? I also have mouth sores that are relentless.

I just started Bimzelx and I was in a very bad way. Vasculitis and third spacing fluid retention. I’ve already noticed some improvement but I have a horrible candida infection in my mouth and throat and my enthesitis is acting up worse than ever. I can barely talk. Severe dry eyes, mouth and nose. Sinus congestion, severe sore throat and my jaw is very swollen and painful. I scheduled a dental appointment for tomorrow but if anyone has any advice, or if you’ve experienced anything similar please let me know and thank you to everyone here.

I’ve been suffering for years with CRP levels in the 20’s+ but didn’t get a Rheumatologist to listen until last year and after being hospitalized for repeated infections and bedridden, I’m trying to rebuild my life. I am a 49yo female with a 10 yo daughter and a supportive husband. My eyes are rough and dry (I’m doing Prokera treatments), my mouth hurts and I’m battling a candida infection, my feet (heel pain) are horrible, my wrists and fingers are very painful and I can hardly grip/grasp anything. I’m scared is what I’m trying to say and just wondering if remission is possible? I just started Bimzelx and just need to know that it gets better right? My pain is horrible and I feel like a horrible mom because I can’t do the things other healthy moms do.

I have metabolic syndrome, high cholesterol, glucose (pre diabetes), ridiculous amounts of inflammation. Deconditioned, always exhausted, low bp, tachycardia, anemia etc. Just began the last biologic before clinical trials, Bimzelx. Already have a horrible candida infection. Need some words of advice/encouragement. I’ve been battling this for over a decade and was just recently diagnosed (2025) and trying everything possible to stay healthy and out of the hospital. It seems that every time I try a biologic (Hyrimoz, Cimzia, Rinvoq, Cocentyx, Simponi) I get sick. The years of chronic inflammation has taken a toll on my vascular system and I now have a port. I’m not sure how to help myself and I’m always exhausted. Also, I’m struggling with adrenal insufficiency and just need to know that there’s hope. I’m so deconditioned after being in a wheelchair and bedridden for the past year. I can hardly use my hands. I’m struggling with pelvic floor dysfunction and don’t want to be back on a catheter because of voiding dysfunction.

Has anyone else tried this artificial saliva spray? What’s your experience? I’ve tried everything (I think) and I can’t seem to find anything that lasts but this saliva spray may work well.

Since I take a biologic for my autoimmune/inflammatory diseases, I am constantly battling with this. My tongue and back of my throat hurts and is bright red from the severe inflammation. My tongue is solid white and also hurts. I’m on a 21 day course (7 days in) of Fluconazole 200mg/daily and Nyastatin 5mls / 4x daily and I feel frustrated with hardly no progress.

HLA B27+ w/ axSpA and PsA diagnosed and on the new biologic (to me) Bimzelx. My WBC is down to 2.5 which has “deflated” me but has its risks. I’m being treated for repeated candida infections and struggling with it all. I’m not sure what I can do to protect/prevent infections and stay out of the hospital. I now have a SmartPort so going to the hospital is very risky for me. Just frustrated and so uncomfortable. Dry eyes/rough cornea pain and severe dry mouth plagues me so much. I’m glad to have a group of people that I can talk to about this stuff. Thanks

Has anyone else had to have one of these implanted due to their blood vessel inflammation/vasculitis?

Has anyone else had to have one of these implanted due to their blood vessel inflammation ?

Has anyone else experienced repeated UTIs and my bladder even quit working for 6 months(indwelling catheter). I wonder if it’s a smooth muscle because I also have esophageal dismotility and Gastroparesis. Any advice would be greatly appreciated as I’m trying to figure it out. One Rheumatologist once told me that she knew what this was and that my bladder would probably regain function and it has but it’s still difficult to urinate sometimes. I wish I knew what I could do to help myself naturally and through supplements. Anyone else struggling/struggled with similar symptoms?

Does anyone have any experience with supplement support for the smooth muscles?

I’m currently on over 19 meds AM & PM. I have vasculitis but my Rheumatologist said I don’t because “it’s not indicative in your bloodwork.” What? I just had surgery to implant a SmartPort device because they’re scared (and so am I) that there’s no longer any veins left for an IV or even a simple blood draw.

I’m on prophylaxis antibiotics, anti fungal & antivirals. Sulfasalizine (but not Plaquenil).
High dose Pepcid & Protonix for severe GERD. Motility drugs (Motegrity & Amitiza). Morphine for severe pain, Lyrica for neuropathy pain, & Methacarbamol for severe muscle pain. Vascepa and a statin for severe hyperlipidemia (high cholesterol), Reglan, Celebrex, Hydrocortisone (Adrenal Insufficiency), Methatrexate .4ml/weekly injections, Senna Plus.

Can anyone else relate?

I’ve asked multiple doctors (I have 14+ now) but none tell me how to properly take these 19+ meds.

I’m reaching out to hear your story and find out what have you done that helps and what specialists do you see when you’re struggling with the symptoms?
My current Rheumatologist is just not familiar with Sjogren’s Disease.

I experience severe breathing difficulties when trying to sleep as well as esophageal dis motility and I’m scared to death to sleep. I’m not sure what doctors could help me? My Rheumatologist isn’t familiar with treating Sjogren’s! It’s scary and I have a 10 yo daughter. I’m living out of a hotel right now. I’m unsure of what to do or who to call? What specialists do I need? Where do I find a specialist who understands? I’m dying of this inflammation. I’m on Simponi and it’s NOT helping as I need something stronger. They have me on Morphine for the pain. I’m in Central FL. Please help!! Any suggestions or tips/recommendations would be greatly appreciated. My vascular system has failed and a couple weeks ago I had surgery to implant a SmartPort in my chest so that they could get access especially in an emergency situation. Can I be saved? My daughter is so scared. I’m sorry but you guys are the ONLY ones who understand. I also have Ankylosing Spondylitis and Psoriatic Arthritis. I don’t even have disability. I’m too unwell and have to be careful where I concentrate my efforts. I am in need of housing and any help I can get medically.

Any associations or foundations that could provide assistance?

I’m wondering if anyone knows what the connection is between these 2. My aunt had Lupus and I have AS, PsA, HLA B27+, Sjogren’s, Fibromyalgia, Metabolic Syndrome, Adrenal Insufficiency, IBD w/ UC and PPP Psoriasis and I don’t understand the severe cognitive decline, memory impairment and vascular disease. I have been told I’m only 1 of 300 similar cases in the USA & of those, I’m the top 5 most complex. Many MDs simply pass on my case and I can’t MAKE anyone treat me. Any advice or experience with all this?