Since going off vesicare last summer, I’ve had bladder issues. No fun! So recently my neuro got me to agree to go to a uro-gyn for evaluation. This was the beginning of my nightmare that so far has lasted over a month starting with the first exam. I won’t bore you with all the details but part of the nightmare is 3 separate lab results showing protein and blood cells in my pee. So now I’m freaked out! I’m trying to figure out next steps but won’t be going forward with this uro-gyn. All of it made me wonder if being on 10 years of powerful DMT’s screwed up my kidneys. (5 years on Tysabri and now 5 years on Ocrevus.)
So…I wanted to ask the MS peeps here if anyone has experienced kidney problems from their DMT and if so, what did you do about it? I might just be incredibly unlucky or it could be a combo of the MS drugs and age.
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Raingrrl
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I've been on a multitude of dmds none have ever given kidney issues. Bladder issues though are very common if not guaranteed with ms. I have learned that constant kiegel exercises help & also I learned years ago that incontinence pads (Poise, Tena, Always) help as a backup
Not hat I’m aware of but haven’t had a urinalysis in years. Sending you well wishes. Protein and blood n urine needs to be investigated but often is not indicative of a big problem
Thanks erash . I’m trying not to go to worst case scenario. I won’t be going back to that uro-gyn so I need to figure out next steps. She caused me so much pain at the last exam, a cytoscopy, that it left me traumatized and I’m usually stoic. So she is fired! But now I have these lab results that need to be looked into. I’m forming a plan but it will take time since appointments are really hard to get these days. My MS social worker knows the whole story and will be advocating to get me the help I need. She is a godsend.
I was taking Tysabri for 8 years and then I got kidney stones-was in ICU for 3 days and then 4 days in the hospital. I am still taking Tysabri. I use diapers at night and on the days I use pads.Rather be safe than sorry.
I spent decades on various DMT's and watched (and graphed my SGOT & SGPT rise to 4x the normal range, which my doctors definitely attributed to the DMT's, but this was Liver Function, not kidney. I was told when it got to 10x normal, then they would worry. It went back to normal after stopping DMT's not related to this, simply because my neurologists said they didn't see me having any benefit from them, and I spent the last couple years with non-stop flue like symptoms including fever and shakes, on and on, with ever dose.So, no. Nothing kidney related. Also, I was on M.S. drugs of the times (Avonex. Betaseron, Copaxone, & Rebif), which I believe are a whole different class of drugs? These were interferons......they did make me bulletproof, never having so much as a sniffle in all those years, only non-stop flue like symptoms the last couple due to Rebif. But no sniffles or sneezing!
No kidney issues from my DMT. When I was quite young I had protein in my urine. I went through horrible tests until I was sent to a urologist. He gave me a cup and had me give him a sample 1st thing in the morning. I did and no protein. Later on in the day, it was back. "Postural albuminaria" was it. When I was upright I spilled protein. When I lay down I didn't. Pretty much outgrew it but I still have very weak fingernails.
My Neuro always runs blood & urine tests every 6 mos to make sure I'm not having any issues from the DMTs as some due cause liver & kidney problems. So far I haven't had any problems after 17 years.
I have to get bloodwork for kidney function before mri's but that is because of the dye and my age, not the dmt. 2 1/2 years on copaxone and 5 ocruvus infusions.
7 uti's in 2021 were no fun. Cystoscopy was normal and thankfully just minimal discomfort, I'm sorry yours was so traumatic. I am finishing up 2nd month of daily low dose antibiotic which seems to be working, I still feel like I have uti symptoms sometimes but test is negative.
Insurance just approved myrbetric, have yet to start. I asked the urogyn if she had to choose between myrbetric or the low dose antibiotic for long term use and she said the antibiotic, hmmm.....
I've tried so many natural supplements to avoid getting uti's and nothing helped.
Thanks for sharing your experience. I had been told the cystoscopy is just a little uncomfortable. Certainly wasn’t my experience! I always get the kidney function tests prior to my MRI’s too. The last time I had blood tests was in Dec. and nothing looked amiss. So what the heck happened and is happening is anyone’s guess. I have Hashimoto’s too which can affect the bladder and then there is my trashed immune system that can get riled up and cause havoc. I don’t really have a doctor that has awareness of all this complex stuff and what can cause what.
I am just going to my first uto gyn. Go please as I have had the same problem. I have bowel/bladder problems. I read all blood tests and see the same. I just had a uro dynamic? Test/ keep an eye as issues are not looked at carefully in blood tests. Try an ultrasound that can check. Keep on top friend. I also found a stone/ large. Read up on UTI/ kidney in recent MS magazine. Easter 🐣 blessings!
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