Irritable Bladder on Methotrexate

[Coffeebix]

I have TAK/GCA and take 25 mg per week methotrexate and 20 mg Prednislone. I am constantly having symptoms of cystitis but there is no infection present from the lab tests. I have read that this can be caused by the methotrexate irritating the bladder. I had to come off methotrexate couple years ago because if same symptoms. It is so debilitating and really getting me down now. I think I am going to have to come off the drug. I am waiting to hear from my consultant. Does anyone have an experience if this and, if so, what did you do. Many thanks.

[BronteM]

Also TAK/GcA and struggling at the moment with exactly the same problem, but I've been blaming the pantoprazole that I take as stomach protectant! I'm on 12.5 mg of prednisone and rituximab; no methotrexate since last October.

It's very weird....I'm OK when I wake up, very uncomfortable by lunchtime, spend the afternoon drinking pints of water, and it wears off in the evening. So I agree with you that it's not an infection, and wonder if I'm taking the drugs in the right order? If I'm too uncomfortable I have some oxybutinin to take, but the effect is only temporary. I've got it down on my list of questions when I go to the clinic next week. It's not good for the concentration or the temper!

[sar1980]

I have recently been experiencing the same, although just put it down to the weird and wonderful infections that we can pick up! My GP has tried me on 3 different antibiotics, although there has been no ign of infection, but just incase. I never realised meth could have that effect. Mine gets worse towards the end of the day! I next go back to clinic on 9th April, so will ask consultant then.

[BronteM]

Rather an indeterminate response from the clinic yesterday. Doctor thought my sample showed signs of infection, so I'm on yet another antibiotic! But yesterday I actually felt fine - had deliberately not taken my pantoprazole yesterday morning. Took it this morning and I'm sore again! Also sore back.....but when i got back yesterday I fell and scooted the length of our bathroom before landing in the cupboard. So deserve to ache in some extra places. Will see if the discomfort follows the usual pattern today.

Otherwise doctor was happy at my blood results; but I still don't understand why my pulse isn't returning and my blood pressure varies so much depending on which arm they choose!

[BronteM]

A week of a new antibiotic had no effect. I'd also tried cutting out citrus fruit, and taking my pantoprazole at a different time, but still had no improvement. So I rang my GP and talked to her, and she suggested that I cut out caffeine. Three days later I am much more comfortable, though missing my proper start to the day. Worth trying? I'll try a few more days, then see what happens if I have a cup of real coffee.

[BronteM]

Three weeks later and I hate to admit it, but being caffeine free has made a huge difference! Only occasional twinges of discomfort now. But if I do have a proper coffee, I definitely know about it after an hour or so. Very sad, as I really don't like the alternatives, but I'm hoping that I'll be able to have the occasional real tea in a few months time.

I do hope you've found something that works for you?