Flare or permanently worse

[ems123]

I've had IC symptoms for nearly 3 years but they have always been quite mild. I've never really had any major flares, just 'better' or 'a bit worse' days/weeks.

Then, last week I took prednisolone (steroids) in an attempt to reduce bladder inflammation. Within an hour of taking them my bladder began to sting and after 4 days my bladder was in the worst state it has ever been in. So I stopped the prednisolone. Now, 4 days later, my bladder is still terrible.

Do you think this is simply a drug induced flare that will settle down or do you think the steroid has permanently damaged my delicate bladder. I can't cope with the thought of it staying this bad :confused:

I'm not on any pain relief at all as I react to so many drugs. And being in the UK I don't think my doctor will let me have a rescue instillation. Help?

[Jem]

I am wondering the exact same thing right now after a very similar experience with Cystoprotek. (I just posted about it a few minutes ago.) My experience has always been that flares eventually come to an end...I think this will be the case for us. I pray it is anyway. If not, I really wouldn't be able to cope.

[ems123]

Thanks for the support. Hope yours settles soon. It seems ridiculous that two drugs that are supposed to help us have caused such problems- but then our whole illness is pretty ridiculous I suppose.

[Jem]

Thanks. :-) I agree with everything you have said!! Ridiculous on so many levels! I'm also in the UK and they just don't seem to use rescue installations or vaginal suppositories here. I don't know why! I hate it when you read about a treatment only to discover its not used or approved here!

[ems123]

What on earth do they use in the UK when the pain gets too much? I might ring my consultant tomorrow and beg for something to 'numb' my bladder.

[Jem]

Whenever I have felt that way in the past I have always been told to go to my GP and get tested for an infection. I have never actually tested positive for one, but they always give me a course of antibiotics anyway just in case. Sadly this seems to be the only thing they are able to do!

[Jem]

Hey,

Just wondering whether your flare has ended yet? Hope you're feeling better?

Jem x

[ems123]

Hi Thanks for asking. My consultant has aknowledged that it's not really fair that just because I react badly to amytriptoline, hydroxozine etc. I should be left to suffer with no form of pain relief. So she has referred me to the pain team consultant in the hope that they can come up with a clever painkilling idea. I think she knows that as I have never ever had any sign of actual infection there is no point going down the antibiotics route. But my referral could take months!!

Luckily I seem to be past the worst of the flare-like you it took about a week. Now I'm just at 'normal bad week' level.

I did look into fowlers syndrome but I don't think my symptoms really match up. I hope yours do, so that you get a proper diagnosis and treatment.

I can now choose to continue cystostat in the hope that it continues to help me more and more, or I can brave DMSO. How am I meant to decide?

I feel that there must be something causing my bladder to have visible inflammation and I'm beginning to think that it's linked to a reaction to something- I just can't work out what as I'm so careful with my diet. If only I could tolerate an anti allergy drug I might start feeling better.

It's my 30th birthday in June and I'm determined to feel better by then- but it's not looking very likely:shake:

Good luck and let me know how you get on xx

[Jem]

That's great that you're awful flare up has ended. :) I know exactly what you mean about a 'normal bad week level' too. :headbang: I hope your referral doesn't take TOO long and that the pain team consultant is able to come up with something more effective. I wonder what other options they have - please let me know. How many treatments of Cystistat have you had? I think I gave up after 3 as it was clear it wasn't helping and was making me worse. I think you should keep trying IF you can and then move on to the DMSO. (The only way is to listen to what your body and your gut instinct are telling you I guess.) A doctor or nurse can say 'keep trying' but only you know what you can tolerate.
I have to admit, when I read the basic articles about Fowler's, I didn't really think it matched my symptoms either - I felt quite skeptical. But since then I have found a couple of other articles which are much more detailed and seem to cover a much wider range of symptoms and I'm starting to think it DOES sound very much like me afterall. One article even has a whole section on how medications can cause retention. And it also gives other possible causes other than just Fowler's. Anyway, I won't know for sure till later in the month! (Have just posted the links on my thread.)
I really hope you are better for your 30th too!! That's such a coincidence cos I'm 30 in November and for the last 2 years I've kept saying to myself "I HAVE to be better for my 30th birthday." It's always depressing when b-day's come around and you cant go out and drink or celebrate properly. I feel like, my 20's have been wasted battling health problems - I'm not giving up my 30's too!!!!

[ems123]

I might have another look into Fowler's syndrome then. Because I don't strictly fit into the IC catagory either (no urgency, frequency not too bad and usually only low level pain), plus I definatly have some problems emptying my bladder and a urodynamics test showed a spasmy urethra. I too had a urethral dilition for narrowed urethra, and at first they thought my inflammation was caused by never properly emptying my bladder, so perhaps I do have it in one form or another.

I've decided, in the mean time, to give DMSO a try tomorrow. I'll let you know how it goes. xxx

[Jem]

You're going for the DMSO! That's great, glad you've made a decision! Yes, def let me know what happens and what your doc says about Fowler's too. It's worth asking though, if only so you can eliminate it from the list of possibilities.

Jem x

[Tina2]

I've had IC symptoms for nearly 3 years but they have always been quite mild. I've never really had any major flares, just 'better' or 'a bit worse' days/weeks.

Then, last week I took prednisolone (steroids) in an attempt to reduce bladder inflammation. Within an hour of taking them my bladder began to sting and after 4 days my bladder was in the worst state it has ever been in. So I stopped the prednisolone. Now, 4 days later, my bladder is still terrible.

Do you think this is simply a drug induced flare that will settle down or do you think the steroid has permanently damaged my delicate bladder. I can't cope with the thought of it staying this bad :confused:

I'm not on any pain relief at all as I react to so many drugs. And being in the UK I don't think my doctor will let me have a rescue instillation. Help?
5 weeks ago i was started on prednisolone, at the same time i started prostoprotex as cystoprotex was out of stock. I felt better than i have ever felt. Then i had to come off the prednisolone as my blood pressure was getting so high. That was 2 weeks ago, instant flare so bad i spent the weekend in hospital ! home now and ok if i lie down, but get up and walk around and the feeling that i need to go and the presure pain and burning is so bad i simply have to go and lie down. Like you i have had flares for years that come and go but this is not going, not even settling a little bit. I am so scared this is never going to settle again. I am in australia and like the UK meds are limited. I am taking vesicare and have just bought some colostrum. Tried to get aratax that is used in the US but cant get it in Aus, so have bought over the counter anti histomine. i even gave cystoprotex that i now have a try but one pill sent me running to the bathroom, so dont know if it was the cystoprotex or the prednisolone that set the bladder off. Due to go on holidays in 2 weeks and dont know what to do.

[Jinny Jean]

Awhile ago I had the same experience when I took doxcycline. I had the WORST flare of my life and couldn't get out of bed. It took about 7 days of HORRIBLE and then about another week to get back to tolerable. I was always soooo scared that it would make my bladder worse... but the good news is that it never did, and even though I have had bad flares since then they have always settled back down. Its hard not to panic I totally understand... Glad your flare has gotten slightly better! :)

Have you tried taking an antihistamine? Im not sure if you said that in your post or not. I take Atarx when I am flaring bad and it seems to help a bit.:pray:

Jenn

[Tina2]

we cant get Atarax in Australia i tried this morning well my husband did and the pharmacy sent him home with zyrtec, which has cetirizine hydrochloride in it as well as lactose so not the same as Atarax, and i am to scared to try anything else that might make this worse. Any Aussies on here that have found an alternative for Atarax ?

[Jinny Jean]

hmmm, it also goes by the name hydroxizine?

My mom takes zertec every day for her allergies and has no problems, but obviously she doesnt have IC either. I probably wouldn't take it either with that nasty sounding ingredient in it! Reactine is an over the counter antihistamine that I get here as well, but I am not sure if they would have it in Australia... :( I hope you feel better really soon.

Jenn

[Tina2]

well feeling really awful does have its advantages :) i did some googleing and look what i found
The active form of hydroxyzine is a drug called cetirizine (Zyrtec). Although, both hydroxyzine and cetirizine act as antihistamines, hydroxyzine causes more sedation than cetirizine. The FDA approved hydroxyzine in 1956.