Tofranil - discouraged!

[Rainwilds]

I am so down on myself today. I recently stopped taking Elavil because of retention issues. So, I swapped to Tofranil, about six days ago. I started on 10mg and increased my dosage to 25mg on day three. I noticed that it wasn't making me retain as much as Elavil. In fact, I could get about five hours sleep solid BUT then I am waking up every hour/half-hour after that! It is so frustrating! I am exhausted! In fact, during the day now, I've been going non-stop. Frequency and urgency (especially) have never been my main symptoms, only pain ... it seems like Tofranil is now following in the footsteps of Elavil!

I think I may have to try something else ... ? I was trying to keep positive about it, hoping the symptoms wouldf ease but it feels to me like it is making me worse. I don't know what to do next! All day yesterday I had spasms non-stop (never had them before for that long). So sorry for babbling on but I'm just so fed up! I've been crying like a sad case all afternoon ... I am seeing my GP this Sunday for a follow-up and urologist referral - I don't know what I should ask to try next ... ?

[leelee88]

Could it be possible you are just in a flare or have a UTI? Just a thought..

[Rainwilds]

Could it be possible you are just in a flare or have a UTI? Just a thought..

I definately feel like I am in a flare - it always feels like a severe UTI for me, but the tests come back negative. I'll be at the doctor on Sunday so she can test for it anyway. But when I flare, my frequency/urgency don't go up this dramatically. All I usually get is pain and a strong feeling of having a fever ... I have those symptoms now. I don't know, I think I am going to drop the Tofranil for tonight and just see how I go off it ...

So sorry to be bothering you all with my negative mood - I'm usually quite upbeat!

[Briza]

I'm sorry this class of meds so far has seemed not to help you in the way you need. I understand because I have experienced mild to severe frequency and urgency as well as mild to severe pain, and tho I have had much success with Elavil 10 mg, it seems to work ONLY for my frequency and nocturia and helping me sleep thru the night. It has not helped me for urgency, burning, pressure, pain....even when I have a spike in symptoms and increase my dose of Elavil to 20-30 mg (approved by my dr) it still only works well for my frequency and nocturia. Has not caused me retention issues, but as I said I am one who has not been helped by it for pain, burning, urgency. Luckily I have other meds that help me very well with pain, burning and urgency....Tylenol w/ codeine (tylenol 3) and Rx Pyridium (otc sold as Uristat and AZO Standard in US) work exceptionally well for me. Also drinking lots of water is imperative to keeping my symptoms under control or at bay. I hope you find what works -for you soon...or like me and many others, a COMBO of what works for you! Take care!
PS> There are bladder specific meds that work for bladder spasms that you could discuss with your dr and do so me research on. Some examples include:
-Pyridium
-Pyrdium Plus
-Urelle
-Utira-C
-Prosed DS
-UTA (Urinary Tract Antiseptic)

as well as a smooth muscle relaxer that acts as an antispasmodic and is often included ingredient in the meds I listed above:
-hyoscyamine
-and possibly bentyl?

So just some things to do some research on and discuss with your dr, esp if you believe that spasms and pain are your biggest problems. For MANY of us, an antispasmodic such as one of the many I listed above, is a mainstay of our treatment plans...and these meds from posts I have seen here seem to be pretty well tolerated by most with few to no side effects....tho each one of us may have one we feel works best for us.

[Rainwilds]

... Luckily I have other meds that help me very well with pain, burning and urgency....Tylenol w/ codeine (tylenol 3) and Rx Pyridium (otc sold as Uristat and AZO Standard in US) work exceptionally well for me. Also drinking lots of water is imperative to keeping my symptoms under control or at bay. I hope you find what works for you soon...or like me and many others, a COMBO of what works for you! Take care!

Thanks so much for the reply - I really appreciate your time!

I'm happy to go for a combo of medications. I'm waiting to see a new urologist who can discuss what we have available in Australia. I get concerned sometimes that I won't be able to get my hands on all these meds I hear about often on here. For example, Pyridium and Uristat ... is that like something you add to water? Can I get it over the counter? I can't see a doctor for another two days yet! Any help would be great - thanks so much in advance! So sorry for all the questions!!!

[Briza]

Pyridium, Uristat and all the other meds I mentioned should be in tablet, caplet, or capsule form. None that I know of that I mentioned are to be mixed with water; however, it is usually recommended that the pills be taken with a full glass of water to get best results. Some find it necessary to do so after a meal, others not. I am ok w/ Pyridium on empty stomach or full stomach....whichever, it gives me much relief for a variety of symptoms.

In the US Pyridium (brand name) is available as an Rx and also sold over the counter under the brand names Uristat and AZO Standard. The GENERIC name is most important as it is the same whether OTC or Rx and I imagine would be the the same whether in the US or any other country>>>digging in purse for bottle b/c it it is hard to spell lol>>...ok generic name is Phenazopyridine. By Rx it is usually prescribed in 200 mg tabs, max 3 tabs per day... but 100 mg tabs are also available in US. The OTC versions are two small tabs that add up to a bit less than 200 mg, and can be taken either just one tab if that is effective, or the usual two tabs.

Pyridium Plus is available only by Rx in the US and it has an extra ingredient or two that Pyridium does not have. These meds have a pee orange urine indicator. Usually very fast acting.

Most of the others have a pee blue urine indicator and all of those are available only by Rx in the US, as far as I know. They may me need to be taken several times a day regularly for a a few days to be most effective. Often they are considered safer for longterm use than the Pyridiums....every dr and pharmacist may have a different reason why. I take Pyridium or one of its OTC versions sparingly and occasionally and my dr and pharmacists are ok with my using it that way.

Hyoscyamine is a smooth muscle relaxer/antispasmodic. I believe hyocyamine is the generic name and it should not turn urine any strange color!

As for equivalent meds in Australia, if ICNDonna does not see this post and respond right away, please pm her because she has a link to a website that posts the brand names of meds in the US and their equivalent (but often different) brand name med in other countries. I am sure she would be very fast in responding to you to give you the link if you were to send her a pm to ask for it. Anyway, having access to that site that she has posted before may be of much help to you in determining what the equivalent meds are in Oz as compared to what is mostly talked about on this board, which is most often what they are called here in US, as you have already noticed. Hope this helps!

Disclaimer:None of the above is intended as direct medical advice. All that I have written above is from my own personal experience and research on these meds, from speaking to my drs, pharmacists, other IC patients, and both here on ICN and from just the usual internet searches for info regardiing these meds.

[Rainwilds]

Briza,

I just wanted to say a BIG thank you for such a detailed response. It will take me a little while to get through it all and to work out those meds over here, but thank you! I really appreciate all the info!

I've cut back my dosage of Tofranil - I thought I'd see how I go with that before I call it quits ...

Ally

[Kieri]

First of all, you are NOT bothering us. We ALL have negative days/moods or even weeks/months!! This is the one place you don't have to apologize because we all know how your bladder can affect all aspects of your life. Also, I have never been able to do the anti-depressant thing .. they don't do anything for me and I lost the benefit of my Zoloft.... in the end, I found that anti-spasmodics did so much more for me. A uro will be able to help you figure out what works for you, but don't force yourself into a corner with one type/class of meds. For me it has been a combination of diet, meds, and lifestyle. Hope you feel better soon!

[Briza]

Briza,

I just wanted to say a BIG thank you for such a detailed response. It will take me a little while to get through it all and to work out those meds over here, but thank you! I really appreciate all the info!

I've cut back my dosage of Tofranil - I thought I'd see how I go with that before I call it quits ...

Ally

You are welcome. The meds I listed can be VERY helpful, because they usually contain both an antispasmodic and a bladder analgesic, and most of the pee blue meds I believe contain an antiseptic, which may help prevent UTIs if one is prone to those. The symptoms these meds seem to help include: burning, pain, spasms, pressure, urgency, frequency. So they can be very good all around meds! And since they are non narcotic usually very easy to get an Rx for. Discuss with your dr which one might be of most help to you! As I mentioned, Pyridium does come in OTC versions here in the US, but if it is available in Australia I do not think it can be bought OTC.

That is good idea to try reducing dose of Tofranil before stopping it. Often Elavil and Tofranil are started at very low doses, it seems, like 5-10mg, to see how patients react (because meds in this class can and do seem to have some pretty common side effects...which may go away with continued use...like the morning groggies) and then slowly titrated up to the lowest effective dose. I started and have remained on just 10 mg Elavil for the most part, just increasing temporarily when I have a spike in frequency or nocturia. Also I have found it works best for me to take it around dinner time rather than right before bed...taking it that way it doesn't knock me out but when I do go to bed I stay asleep with maybe only one nighttime trip to RR. Anyway, best of luck, and like Kieri said, don't forget the diet and necessary lifestyle changes that benefit many of us! Take care!

[sully02]

Ally,

I have lived with depression all my life and am on drugs for it also. If I was not depressed before this IC would certainly cause it for me. Please feel free to vent here. I have only been reading this for a year or so but feel I get the best information here. And only here can I find other's that know what I am talking about. I am on cystoprotek. It is a supplement that is supposed to rebuild your bladder lining. I believe it is working for me. It has been 5 months since I started taking it and I am seeing improvement. It is an otc here in America, plus I think you can order it through this website's shop. Another great tip I got from this board is to get a peri bottle or even water bottle that will spurt out and every time I pee I rinse my self off with it. I can see a huge help with that simple tip. It also feels refreshing. I also have had about 12-15 instillations of medicine. I still do not feel comfortable making plans in advance because never knowing how you will feel but I do have more good days than bad now. Hang in there. With time and information you will improve. Good Luck
Sully (sandy)