Best meds for burning?

[Chloe68]

Hi; I've been in a burning flare for 15 days. Just constant, relentless burning. My specialist gave me Ultracet, Soma, and I also take Urelle. Sometimes I take Benadryl too. I have breakthrough pain despite all this; in fact I think I'm getting resistant to these meds. This is very unusual for me since I've only ever had one flare in the past (March) and it was 2-3 days long max.

So... can any of you recommend the best drugs for burning pain? Is Pyridium the same as Urelle... does Elmiron/Atarax stop the burning? Any and all suggestions welcome!!

thanks...

[Chloe68]

Also, I tried baking soda last night and I feel like it may have increased my pain... kind of felt like salt on a wound. So I don't wanna try that again ;)
Anyway, thank you in advance for any med suggestions here.

[Claredale]

I am sorry you have been dealing with the burning for so long. Urelle (Prosed DS) for me takes care of most of my burning, but I still have days that I have to "baby" my bladder. I drink tons of water anyway. Baking soda used to work for me, but now that doesn't either. Have you been check for an infection? I know everytime I do, it's negative, but I thought I would ask... What sometimes helps me is taking an Alker Seltzer. When I used to have burning alot prior to Prosed DS, I was able to get scripts for lidocaine Jet Gels which I squirted lidocaine with a syringe directly into my urethea. I haven't been able to get those filled in a while. That is really on a temporary fix (maybe 15 minutes) but it allowed my pain meds to kick in to help. I had B&O supp that helped as well.

My Prosed did take a couple of weeks for me to start feeling the relief. How long have you been on the Urelle? I was just about to give up on it when I noticed my symptoms burning and spasms were decreasing.

I hope you find something that helps!

Hugs, Tracey

[Chloe68]

Hi Tracy,

Thanks... I take Urelle "as needed" -- are you supposed to take it on a constant basis?

Yes, I gave sample to check for infection last week; haven't gotten results yet.

What is a B&O supplement?

I assume Elmiron must stop the burning. Does it?

[SharonA]

Have you been checked to see if you are running a bladder infection?

[Claredale]

Chloe, I have taken Prosed since last August. I started out 4 times a day. It can be used long term. It's not like Pyridium or AZO where you can only take that a few days at a time. My symptoms of burning, spasms and even some of my pain reduced with use of the Prosed DS. I think around March I started taking only 2 a day due to the cost, so I only have to use one prescription over 2 months. I also wanted to mention that I stopped taking it about a month ago because I thought I had an infection and Prosed DS can alter the UTI testing. I noticed pretty quickly that my symptoms were increasing. I was back to pain meds during the day. I very seldom take pain meds during the day anymore, Just at night I take one before bed and sometimes one around 3 am.

Sorry I didn't explain earlier. B & O suppositories are Bellodonna & Opium Suppositories. They are used for pain, spasms and helped with my burning pain. I have had IC for going on 21 years now. I never had the "burning bladder" pain until last summer. Until then I was going along pretty well on my meds combo. I tried the usual nerve pain meds like Topomax, Lyrica and Neurontin, but I couldn't handle the side effects. I read another post of someone using Prosed DS for their burning pain, since their description was much like mine. I felt as if my bladder was on fire and that I was peeing shards of glass. When I looked it up, it reminded me of Trac II (spelling) that I was given early on in my diagnosis since Pyridium made me very sick. I asked my doctor if I could try it and he did. I know all meds don't work the same, but for me, I call Prosed DS my miracle med. I don't know how your urg/freq is. Mine was 2 to 3 hours with the interstim, which I thought was great! Now I can go hours and even hold it without "paying the price" later. I would say that my voiding is about 5 to 8 times a day/night. Prior to the interstim I could have stayed in the bathroom all day long because the urgency never went alway.

By the time Elmiron was on the market for IC, my IC had progressed to severe. I was on it for over 6 months with no change in my symptoms. I also had the side effect of losing hair. While I know many people that have success with it, I think it needs to be started as soon as possible before the bladder has too much damage for it to work for people like me.

T83

[bunnykinb]

Tracey, '

Which helps better, Urelle or Prosed? How long at a time are you on Prosed? I am taking Urelle again since my burning has started up mid June with a couple days relief here and there.

Also, for the B&O, are those suppositories for the rectum? Who prescribed them?

[Claredale]

I only took Urelle (samples from my doctor) for a few days since my pharmacist had to order the Prosed in, so I don't even know if there is much of a difference. It's been a while, but when I looked up the active ingredients they were very similar, plus they are the same price with my insurance.

Yes the B&O supp go up there. The dissolve fairly quickly and give me a sort of warm feeling. There was a time that I was using them up to 4 times a day and I very rarely felt groggy, but I had been taking them for a while. I only take them a few nights here and there now, but I am back to sleep within a few minutes instead of waiting 30 minutes plus for my pain meds to kick in. Because if I am woken up with pain, the pain level is at that point that it takes a little longer for my meds to work. I go to a uro/gyno. He handles all of my IC symptoms, but he specializes in pain management as well. My prior doctor is who started me with the B & O supp. She was a pelvic pain specialist.

I know from some postings some people have a hard time getting them filled after they get their prescription. I get mine filled at the Super Target. I called Rite-Aid last night just to see if they have started filling them again and they said it would take a few days to get them in. That is where I got them for quite a while until my kind pharmacist retired.

T83

[Briza]

Interesting...a couple of questions that have been lingering somewhere in the back of my mind for quite a while were answered:) in the posts above, +/-.

?Tracey...so Urelle and Prosed are basically the same thing? Is Prosed DS the same as Prosed? Do any of them come in generic form? I am trying to remember what I was rxd way back when in the dx process before my symptoms were under control, I think it was Urelle but it may have been Urised, can't remember....I think both turn the urine blue. Is Urelle the one that has the additional potential benefit of helping keep bacteria at bay as opposed to the regular Pyridium (not Pyridum Plus)?

Pyridium (generic), and its OTC counterpart Uristat, have always worked great for me for burning, and usually my first line of defense if I felt something stirring in my bladder and it would often stop symptoms from progressing from a twinge to worse.

My dr would rx me 30 generic Pyridium a month, though I never took more than one a day unless in a flare, and never used up my 30/month...at the most 15/month taken just one a day here and there. My pharmacist and dr said it was ok for me to take it that way, since I wasn't taking it round the clock or everyday (my worries being that my pharmacist said it can create crystals in the liver...hence the warning for longterm use). But of course I am always concerned about any med that may have a bad effect on my liver!

SO....since my pain med Tylenol 3 (also taken only as needed and sparingly and always way under the daily max dose of tylenol as ok'd by my drs and pharmacist) also worked just as well for the burning as Pyridium and also taken alone without anything else will also stop the dreaded twinge in my bladder from going from bad to worse, I've often wondered which is the better of the two evils for the liver...Tylenol or Pyridium? ....even if taken sparingly and under the max recommended dose....
I'm not wanting a medical advice on this, as I have already gotten that from both my drs and my pharmacists, but just what anyone's thoughts on that are...

B&O suppositories...when I hear suppository like most of us I think rectal, but for whatever reason had been thinking/hoping:rolleyes:, somewhere again in the far reaches of my mind, that it was a vaginal suppository...:bonk:
Sorry to repeat myself...but are B&O available in generic form and if they are or even if the aren't, are they reasonably priced? For some reason I thought they had to be specially compounded at a compounding farmacia, but I see that Tracey you were getting them from Target pharmacy and RiteAid, so I guess not!

Chloe...I also have to baby my bladder with LOTS of water, all the time. If I don't then I will set myself up for burning. My skin is so sensitive when I have IC or VV symptoms, even on my lower back, that I'm a rare one who rarely uses a heating pad b/c I just can't tolerate the heat touching my skin. But cold packs of frozen peas, frozen anything give me much relief.

Ok, I'll stop my rambling:)
Chloe, I hope you feel better soon and find something to help relieve your burning!
Tracey, thanks for any info you can provide!
Bri:)

[Claredale]

Hi Bri, The Prosed DS does not have a generic. I never really checked into the differences in the two in very much detail. I do know that Prosed DS is actually for people that have chronic UTIs, but it does work for some of us ICers. We just have to ignore the drink cranberry juice, etc on the information sheet. I did ask my doctor one time about another Prosed that I read on here. I can't remember....it was just another letter. He said that he couldn't find any difference. My pharmacist said pretty much the same thing plus that maybe a different active ingredient. Nothing to make me want to give it a try, My doctor didn't even prescribe Prosed DS for his IC patients until I asked about it and had my little info sheet about it being an antispasmodic, etc. Yes it does turn your urine, your undies, and the waterline of your toilet a lovely shade of blue. But I do like blue better than orange. LOL!

Regarding the B & O supp. Yes they are rectal but I have seen posts where people have used them vaginally, so I tried it. Not as effective for me. Just messy. They do come in generic form. They have been out a while. The non-generic are sooooo expensive. When I was on the hunt for them last fall, I called the compounding pharmacy that did my valium supp and they were like $4.00 a piece. I was getting 60 (generic) for $5.00. I was so glad that I was on the Prosed and it was doing it's thing, otherwise, I may have had to break down and but the compounded B & O supp. My doctor did give me a few that another patient gave him that were compounded. I have to say they weren't nearly as effective.

T83

[purpleviolet]

I did take prosed temporarily when on a trip and it helped, although burning is not my main symptom. (I've stopped it, I'd like to know if the methenamine really turns to formaldehyde which is carcinogenic). It also has benzoic acid which takes care of making the urine acid (even if you don't take cranberry). Methenamine will not work as an anti-infective in an alkaline environment. The other ingredients are phenyl salicylate which is like aspirin, and
hyoscyamine which is anti-spasmotic. I believe it does not have atropine in it anymore which I think the old urised might have. The question I think anyone who takes it long term should ask themselves is - is it necessary to have all these ingredients for the relief that you are getting, or is it really only one or two that are helping you. Is all that blue necessary. I know that it is hard to get these answers out of doctor. I know that anti-spasmotics like the one in it are available by themselves, because I have gotten a prescription for that, too (urospaz). It is so nice to hear, however that something helps people very well. Does anyone get any side effects like constipation? I did a little but I only took 2 a day plus about 5 mg valium at night.PV

[Bea]

I have to say although it already has been said, that prosed ds, lidocaine, lots of water, a hot bath all combined has really been helpful for me with the burning.... hope you feel better hon

[Claredale]

Man Purple Violet...all I can say is that it turns my urine blue and you know all the reasoning with the names. I guess I do my research on the "meds for dummies" sites. I understand not wanting to take anymore chemicals than I need to, but Prosed DS (within a few weeks) had allowed me to take 1 1/2 to 2 Lortabs instead of 4 a day. I no longer take Elavil at all. No more craving sweets! Well, unless I see them on the menu! I was taking 9 different meds, sometimes more last summer. Now I take 4 on a daily basis, but the doses are at least half and two that are PRN. I have had my liver tested several times in my years with IC and I am amazed that the doctor says that there is nothing to be worried about, even when I was taking so much pain meds. I am also down to 2 Prosed DS a day. One at night and one in the morning. Other than the morning dose of Prosed DS, I don't take any meds until it's time for me to go to bed. With the exception of possibly triggers my bladder to be irritated.

Bea, I am glad to hear you are having success with it. My doctor told me that he has prescribed it to some of his IC patients that have reported good results as well. He was glad I mentioned it.

T83

[aprilchen]

Something to really consider when thinking of using AZO or Pyridium IS the liver problems and it can be a real threat. I took it (under my urologist's advice when we were in MS) and when we moved here to Ohio my new doctor ran a bunch of basic labs. My liver enzymes were highly elevated....so much so that he told me to stop Tylenol or any pain medications containing that AND Pyridium. I was using Pyridium Plus (the difference between regular Pyridium and Plus is that the plus contains a spasm med known as hydrocosamine). Anyway, I wasn't taking a lot of pain medications which contained Tylenol so he said it had to be the Pyridium. Sure enough, I stopped it and a month later my enzyme levels had almost returned to normal.

As for burning, I have found recently that B&O is awesome and especially so when you use a Urojet (shoot the lidocaine gel into your Urethra) with it. The Urojet lasts about 15 min. and that has been enough time to let the B&O kick in. Now that I have been using B&O, I take a whole lot less Vicodin, etc.

Hope you find something that works for you.

[Tinkerbell23]

chloe, when this happens to me my dr puts a "numbing" cocktail right into my bladder. i actually makes it worse the next day, but then it helps...sounds strange, but she says its common. (she actually didnt tell me this would happen because she didnt want me to say i didnt want to try it) but i use it whenever i have a flare that lasts longer then a few days.

[bunnykinb]

I had written a long post and it didn't go through.

[bunnykinb]

I read here that Utira-c is the generic form of Urelle, but it seems more like Prosed DS because of the atropine.

My current urologist who I get the heparin instills said if I am not relieved from my vulva/clitoris burning, he doesn't know what else for me. I missed work 2 days this week because of relentless pain. I also went to a urogyno recently who said I had pelvic floor spasms and vvs. Not that I wanted more things going on, but at least something else was found and it wasn't in my head.

[Grammy]

I found out by doing a lot of internet searching that the company that made urised had some issues with the FDA. I have found nothing that helped me as much as the urised. I am now using prosed DS but like many of you I do not like the thoughts of long term side effects but what are we to do on the days( and there are many) when the pain just rules your life. It puts such a damper on everything. Often I am too tired to do anything that is fun. I am sure many of you feel the same. So do any of you know if you can get urised again and also if the B and O suppositories are now back on the market. I am finding that I am not getting good results from the valium suppositories. I also would like to know if there has been a poll on this site as to the best overall antidepressant for anxiety, depression, and pain.

[Claredale]

Yes Grammy, B&Os are back out (since March) in generic form. If you have any problems finding them, I know that the Super Targets and Rite-Aids have them. Any pharmacy that uses Paddock Labs as a supplier will be able to get them in within 2 to 3 days on average.

I have been researching the aspects of long term use on Prosed DS pretty much what I have read is that there isn't much info out there. I have been on it almost a year now. I took it 4 times a day for several months (August thru March) then started taking it 3 times and now down to 2 times a day. The only side effect that I may have from it is it effecting my eyes. I haven't been to have my eyes checked in a while, especially since the last time I went was the first time I ever needed glasses (I am far sighted), but of course turning 40 was requiring either my arms to get longer or the dreaded reading glasses. Anyway, I bought glasses and contacts. Shortly after that, I had to change one of my medicines and that totally changed everything. My contacts were absolutely no help, plus I have an assortment of reading glasses from drug stores which I pick and choose from to see which ones are for me today. This was way before I started on Prosed DS. I need to research back to see what med it was to effect my eyesight that way. I know I wasn't taking any OABs, I stopped even trying those years before (definitely messed with my eyes). Anyway, I am doing more research when I can. The funny thing is most everything I pull up takes me back to the ICN. But for now the Prosed DS has been the one med I can count on to give me my life back. I feel better that I am decreasing my other meds as well. I have had my liver checked through the years, especially due to all the meds I was on prior to my implant. I was so afraid of those results, but again my doctor told me there was nothing to be concerned with.

I was looking back at my journals last night because someone posted about Urispaz which my first uro prescribed for me over a decade ago. I thought the name was so funny and obviously very appropriate for me at the time, but after a couple months I didn't see any benefit from it. I didn't write down and side effects, so I must not have had any problems, just it didn't work like my doctor and I hoped. So on with the Prosed DS. I am glad for one thing which happened only because I thought I had a UTI and Prosed DS from what I have been told by my doctor does mess with the testing of a UTI, so I stopped taking it for almost a week and after a couple of days, my intake of my pain meds was back up there, of course I was dealing with the "symptoms" of a UTI. I was never actually diagnosed except by the take home test was positive. But as soon as I went back on my Prosed DS, things went back to normal. I did take a OTC med Cystisat (I just called them the red pills) since I am sensitive to AZO.

So anytime anyone comes up with some details on the long term effects, let me know. This is a rather new med from what I can tell. I can't exactly figure out the reasoning for the blue dye because everything I read had to do with tumors and the dye helps watch the activity. I am reading this info loosely because I was just scanning looking for Prosed DS as used for IC.

Anyway, Grammy, I hope you will be able to find the B&O suppositories. I am glad to have them back in my weapons for a bad day (night) that comes along.

T83

[Bethany2v]

Really bad burning is a major symptom for me. I've tried Lidocaine patches & gel, Pyridium & Prosed DS but none of these have really helped the pain. Sometimes I take some Ibeprofen but I don't know if it really helps, I guess I'm just hoping it will. Does anyone know of any stronger medicines for burning? It's so hard when nothing seems to work for me! Several of you have posted about B & O, what is it? Is it another medicine for burning?

[bunnykinb]

Gosh, I am like the rest of you, looking for answers to the restlentless burning that takes over our lives. I have been taking Urelle for the burning, but my head feels spacey. Urelle can cause dizziness which is probably the reason for the spaciness and lack of concentration at times.

[purpleviolet]

I once found an OTC drug called Cystex which had a subset of the ingredients in Prosed. It had the aspirin like component and the anti-infective (not sure if it had benzoic acid) It didn't have the anti-spasmotic. One could theoretically buy Cystex and get the hyoscyamine (the anti-spasmotic) as a prescription from the doctor (maybe this would end up being more expensive, I don't know). The only thing missing would be the blue stuff which stains your underwear. You also could see if the Cystex relieves your pain as well or maybe you do need the anti-spasmotic.

[elamar]

I just wanted to post about a natural supplement called cantharis. I bought some at whole foods market. They are tiny pills that come in a vial. You take 5 three times a day. The vial cost about 6 bucks. I am very pleased that this has really reduced my urethral burning. I would obviously check with your doctor first to make sure it doesn't interact with any other meds you are taking. I just wanted to post it here since it really has surprised me at how well it works. I also wanted to post about club soda. Sometimes when the burning is bad, I'll put my feet up and drink a bottle of club soda. It helps reduce my burning due to the sodium bicarbonate. It's sort of like drinking the baking soda in water trick, only it's carbonated if you can handle it. Hope these little tricks can help someone out there. Good luck.

[bunnykinb]

Why does the sodium bicarbonate burn? I get that with my heparin mix.

[justice4j]

I've been taking Urelle for probably 8 years now. I find it works better that Pyridium, or just plain Hyoscyamine-- the anti-spasmodic. Years ago, I took Cystospaz and the dry eyes and mouth were really hard to take. Hyoscyamine is drying as well, but not like Cystospaz--that was terrible. Hyoscyamine is also generic and inexpensive.

My endocrinologist orders liver enzyme labs every 4 months. I am very fortunate-- my liver must be a good guy b/c I've never had any elevated liver enzymes. I LIVED on Pyridium and took a fair amount of Tylenol #4 years ago and really feel lucky I have no liver problems.

Hope some of this helps. Janet