Kenatol Injections new IC member

[jmfedor]

:hi:

Hello to all Aussies,

I am new to the website and a few of the ladies from USA said to try and get into the Australian forum.

I was diagosed with IC last year after many visits from different doctors, I finally got my diagnosis after 2 years. I went to the Urologist who has started me on anti inflammatory steroid injection called Kenatol. Most haven't heard of the name but suggested I try the Australians.

They say it may take a few before any effect, so far no affect but I have only had one.

I live in Queensland, and I hope to keep in contact with people that understand a little better what I have than most of the population around me at the moment.

Cheers for Now
Jules

[Rosalie]

Hi Jules, nice to meet you.
I know what you mean about those around you not understanding what you are going through as would just about every member on the boards.
Sorry that I can't help you as I haven't heard of Kenatol either but other Aussies may know more. Hopefully someone here will know something about it. I take Endep and it took a little while before it had any effect.
I am still hoping and wishing that some smart fella will invent a cure or at least a treatment that could alleviate the symptoms better.
Where in Qld are you? My family and I spent Christmas in Warwick and then a few days in Brissie. It was wonderful and the weather really kind to us. Not like Melb at the moment , it is hellishingly hot with no end in sight.

[ouch_a_lot]

Hi from a fellow Australian. I have not heard of kenatol either. I do sometimes take an anti inflamitory called Naprosyn but thats in pill form. I try only to take it when my symptoms are really bad. I am also on endep like the previous poster. 50mg a day at the moment, would like to reduce that at some stage. Good luck.

Ouch.

[Smokey]

Hi Jules,

nice to meet you. i am from Melbourne. I havent heard of Kenatol either. i havent seen my urologist in ages so i dont even know if she would know. i am on the desert harvest aloe vera, msm/glucosamine it has saved me.

how is the weather in qld? its sooooooooooo hot in melbourne, i am getting sick of the sun already.

please keep in touch

Lorena

[jmfedor]

Thanks for the feed back guys.

I actually live in Townsville at the moment it is raining all the time and really humid. I like the wet season up this way everything is nice and green. I don't think it will stop raining for awhile as there is a tropical low just North of us at present. I do know Warwick as I come from Dalby originally (which is just over the hill and around the bend).
I have been glued to the Australian Open Tennis at the moment and the weather in Melbourne looks like Townsville should be.


Does this Endep that you take do you any good. The Steriod injections called Kenatol are suppose to suppress your burning pain, you go under general and get the steriods injected into your bladder, the only information I have is what the Urologist gave me, apparantly you get one every 3 months over an 18 month period. About 20% of women notice an improvement after the second injection and 80% after the third injection. I really hate hospitals and going under general, but I suppose when your in pain you will give anything a go.

I also went to a dietician, who has never heard of IC before, but she has been researching and trying to help out on what foods trigger the pain. I have been keeping a diary, but this was fairly hard over xmas, with everyone offering chocolates, wine and all foods covered in some sort of sauces with tomato in it.

I suppose if anything I will never get fat. I went over to NZ at xmas and lived on ice cream and milkshakes, this seems to be foods that don't give me pain.

Have you been on a diet for the IC or are you just more aware of what you are eating?


Cheers
Jules

[jmfedor]

Thank for the tips Lorena,

Can you get desert harvest aloe vera at any Health food shop? I searched online but they all are advertised overseas.

Cheers
Jules

[justice4j]

Maybe it's the steroid Kenalog that is put into instillations???

I hope I get to visit your great country someday.....sigh....healthcare costs are hideous here.

[Rosalie]

Janet, I only know 'kenalog' here as a cream for mouth ulcers.

Jules, the Endep saved my sanity, but before I was diagnosed and on this medication, it was this site that made a huge difference to handling the symptoms. Tomatoes and regular coffee (decaf is OK) are my nasties. I can take a little of each sometimes, and others one mouthful will set things off.:cussing: I love tomatoes! Fortunately, the yellow varieties seem to be OK but are difficult to buy. And, my feeble attempt to grow them this year has been a miserable failure with the water restrictions and current blazing heat. Could you please send some of your lovely rain down here!:lmao:

How old were you when you left Dalby? My hubby's family is quite well known in the district. Wouldn't it be funny if you knew any of them!

[jmfedor]

Hi Janet,

The injections are called Kenatol, they put you under general and it takes about 15 minutes to inject into your bladder. The urologist has been researching for awhile now and I think this is fairly new treatment.
You will have to visit Australia one day, I haven't been over to the USA but I am hoping to visit Canada in the near future. I love Australia and would recommend it to anybody that gets the chance.

Jules

[jmfedor]

Hi Rosalie,

Well I left Dalby in 1985, I was about 18 when I left, but may family lived there for most of their lives in the actual township. I may know your husband's family if he lived in town. I went to the Catholic school for years. I lived in Brissy for 1 year and then joined the Army for 21 years. I had a great time but they wanted to send me South to Melbourne, (without my family),so it was time to leave I have been out 18 months and now all this IC trouble has started. Pity really since I got free medical and dental for so long. I think my body was under a 20 year warranty that ran out after discharge.

I have given up the tomatoes and coffee (that was really hard), but sometime I slip a decaf in at work. I eat chicken and steak and veggies, but I can't seem to find a fruit that is easy on my bladder. They say pears but tried one the other day and got pain. The urologist has told me to take 1 cranberry tablet a day and 1 spirunlina health tablet (for my imune system).

I must ask my urologist about Endep (is it a capsule or something?)

Cheers
Jules

[Rosalie]

Jules, my surname is Kirkland and my husband's family are farmers from the Allora/Deuchar area. One brother, who is still on the family farm, was on the local council for a number of years, another has a property near St George. A sister and brother are in Warwick now. His youngest brother is in Yarraman and his elder sister in Brissy...... Hahaha there certainly are a lot of them! And with David now in Melbourne, you can see it was an amazing effort for my sister-in-law to organize the extended families to be in Warwick on Christmas day. She sat 39 to lunch!!!!!!!
Do you mind my asking your surname?

When you were in the army, what choices did you have with doctors/specialists? It can be hard to find someone with knowledge of IC. You never know, but it may have been better that you are now a civvy?
The Endep I take is in tablet form and my dosage is a low one of 10mgs. You will hear it called Elavil by the American posters.

I know that cranberries can be one of the worst fruits for an IC bladder but perhaps in dried form the are OK. However, I would check before taking them.
I will post on another thread to see what I can find out for you.

[jmfedor]

Hi Rosalie,

Well my surname was Winter, our family lived in town including my grandparents. They owned a couple of local corner shops in town and my Dad was the local painter. My older brother has been a Cop for along time and has spent alot of time in the area.
Your husband's brother who is in Yarraman, may have heard of my brother in law, he used to be the local Cop there for about 6 years (Perry Irwin), but went to Caboolture near Brissy and unfortunaley got shot dead by some druggo, leaving my youngest sister with a family of 4. We had his funeral in Yarraman and he is buried in the local cemetary. They loved Yarraman.

I was probably lucky in the Army as I had a good Civvy doctor, and in Townsville you are fairly restrited to what specialist you can go to. The one I am seeing seems to be right into this stuff he is also a Gyno. But there is only about 2 Uros in Townsville anyway. Iam just shocked with the charges of the medical system even when you have private health cover. I must of been spoilt.

I remember when I kept getting UTI's the civvy doctors kept telling me to drink Cranberry juice and thats what I did all the time (no wonder I was in agony). The Uro tells me that the dry form can put a protective lining on your bladder.

The name Kirkland doesn't ring a bell but my younger sister might know because she is 37 years old. (I am 43 years) ,What school did he go to?

Anyway keep in touch
Jules

[Rosalie]

Hi Jules
I posted a thread in the following forum

"The IC Diet > IC Diet: Recipes and Menu Ideas >"Cranberry in tablet form""
if you want to follow any of the replies. A naturopath told me she thought it would be ok to take the tablet form. However, I stayed away from it 'just in case'

I am so sorry to hear about your brother-in-law, it must have been a terrible time for your family.
My younger brother has lived in Caboolture for many years and my BIL has been in Yarraman for over 20 years...it truly IS a small world. I am sure they will remember your BIL.
My husband's youngest sibling has turned 50, so you may not know any of them personally.
David went to Allora primary and then to Warwick high.
Although not catholic, David seems to have some affinity for The Sacred Heart of Deachar (I think it is in the same road as his now gone primary school). We always go to visit it when we are up there. On an overgrown part of the old fence is a wrought iron gate with the name of the church on it. He has always said that he would like to own that gate Hahaha...why? I have no idea:lmao: ..... but we DO have several picture of it. One day I am going to have it framed!
I will ask him when he gets home, if he remembers anyone of your family name.

[haylee86]

Hi Janet,

The injections are called Kenatol, they put you under general and it takes about 15 minutes to inject into your bladder. The urologist has been researching for awhile now and I think this is fairly new treatment.

Jules

Hi Jules :hi: How are you? I have had the injections about 4 years back but mine were called Kenacort i think. But same deal as yours. I was told that i had the worst case my doc has seen and that suggested that i have this injections. I only needed 3 and they worked a treat for me. He said it showed a very very good improvement by the third injection. They helped me for 3 years with no other treatment but now i have to get more done. But my doc in WA has not heard about them :( Im hoping my new doc in perth ( as my doc here can no longer treat me cause of how bad my condition is) knows about this treatment!
Good luck with them and i hope they work! :)

[jmfedor]

Hi Haylee,

You are correct about the injections, they are called Kenacort not Kenatol, I had to check me paperwork that the urologist sent me. I have had my first injection just before xmas, but the Urologist told me I won't notice a difference until the 2nd or 3rd.

You are the first person that has heard of them and I am glad that you had success for 3 years.
Can you get more now that you are getting pain back after such a long period of time. Or due to your move you can't get them in your area off the different specialist.

Jules:bow:

[haylee86]

Hi Jules,
Yeh i felt the wonderful effect after the 2nd injection but they said after the 3rd injection that the walls had greatly gotten better. My pain has always been bareable and never really annoying. I have had this most of my young life now so i dont really know what its like not to have pain, so i have just learnt to ignore it kinda. After the bladder strechy thing cant remember the name of it) done i have had more pain then ever before. Just read up about DMSO which my doc said he will suggest and im not really keen on it as they dont really use it anymore. So im going to really push to get the kenacort injections done again.Thats if he has heard of them.The reason my doc wont treat me anymore here is because of my age and how really bad my condition is. Are you on any medications as well?

[jmfedor]

Hi Haylee,

I am not on any real drugs, but take those Aloe Vera tablets from USA and cystoprotek from USA, they are mainly vitamens and from Australia Spirulina for bladder health.

I am in pain sometimes but contol by diet, I have a bit of a flare up today, don't know why but will take it easy over the weekend. I see my Urologist on 20th April hoping to set a date for the next injection.

I am 43 years old, how old are you it sounds like with you must be younger with smaller children than me.

I hope the doctors over there can sort things out, but I know what its like being busy with kids and working fulltime. The more I keep busy the less time I have to worry about the pain.

Cheers
Jules

[haylee86]

Hi Jules,

Yeh i also control by diet but there are somethings that are on the good list that make me flare really bad but then some things that are on the bad list that dont make me flare at all.

I got diagnosed at the ripe age of 18. But i also have endo and was diagnosed with that at 17. Yeh i have 2 kiddies 2 1/2 years old and 1 year old.

I hope they can sort it out to. I think now i have a small ulcer from the operation and it hurts alot more then it used to and get heaps more flares. Im thinking if this doc hasnt heard anything about the kenacort injections then i might be prepared and see if i can find my old info sheets to take with me.

Good luck on the 20th and i hope you have the same effects as i did :)

Cheers
Haylee

[jmfedor]

Hi Haylee,:smile tee

I have a 16 year old and a 12 year old, grade 12 and grade 7.

They are good kids but don't really understand the situation, besides I don't want to burden them with my pain, so I usually suffer quietly around the house. My husband tries to understand, but has trouble excepting the fact that IC is chronic and its not just a "fly by night thing".

You must be busy your kids, I remember mine being that age and they were always wanting Mum for something.

Anyway Haylee my email address is dfedorni@bigpond.net.au (if you ever want to chat).

Cheers
Jules:hi:

[ouch_a_lot]

Ah kenacort. Sounds like something I would like to try.

I usualy suffer quietly around the house as well, although I dont do "domestics" I do DIY. My wife is a saint but we struggle to talk about this disease as we end up shouting at each other. She thinks she understands I think she doesnt. Something like that.

Cheers Ouch.

[haylee86]

Hi ouch a lot, i got the injections in qld and have moved to wa and they wont do it here. If you send me your email i can email you the info page that i have on the injections and you maybe able to talk to ur doctor about them. Its worth a shot and i have heard people from wa have gone to qld just for the injections. I highly liked them and i have been told by 2 doctors (1 qld and 2nd wa) that i am the worse they have seen and the injections helped alot. The thing i liked was after each injection they can tell you how well it is helping your bladder as they check b4 they give you the injection (which thankfully you are asleep for)
Anyway if you need anymore questions please dont hesitate in asking.
Hayles

[jmfedor]

Hi Ouch,

Haylee is probably more experience about the injections.

But my Urologists is in NQ (Townsville). If you need any details let me know

Yes I don't think anyone understands IC unless you have it even though many people have tried.

Jules

[L. Thomas]

I 'm not sure but could it have been Kenalog? A lot have had Kenalog instills. It is used in a variety of conditions such as allergic disorders, arthritis, blood diseases, breathing problems, certain cancers, eye diseases, intestinal disorders, collagen and skin diseases.

It is a corticosteroid hormone. It works by decreasing your body's immune response to these diseases and reduces symptoms such as swelling.

Most people who have instills have other ingredients in the instills. The most common ones are lidocaine, heparin and Elmiron.

[haylee86]

Hi L. Thomas. These injections are called kenacort injections.
http://www.malcolmfrazer.com.au/Miscellaneous%20Procedures/Intravesical%20Steroid%20Injection.pdf
That is the link to the information i have on them and was given when i had them. I hope this helps someone :) (if i wasnt allowed to post this then please delete :))

[L. Thomas]

I wonder if the brand name for Kenalog is different in Australia. The Kenalog used in instills act the same way but in the US the medicines are injected through a catheter into the bladder. Lidocaine gel is often used to numb the urethra opening prior to the instillation.

I wonder if any of the MD's in Australia do instillations. The link in my signature to scholarly articles addresses different treatments and research in IC including bladder instillatioins (sometimes called bladder wash). I do home instillations of lidocaine and heparin as needed and it totally controls my IC. There is a board on this site for instillations under moderate treament for IC.

The only time I have read that a general is used in treatment is when a hydrodistention is done and that is the stretching of the bladder. Sometimes after the hydro they do an instillation.

[Bella Spirit]

Haylee I spoke to my doctor today about the injections. She knows what they are and is going to look into it for me. She doesn't think there is anyone in WA doing them but she's going to find out. She know you can definately get botox injections here.
I know that doesn't really help but at least there is a small possibility of her finding someone.
I will be seeing her again at the end of the week so I'll ask her again :)

[haylee86]

Hi bella thats great that a doctor even knows that they are! Yeah i know they do botox in aus and i havent really looked into them before. It would be great if she can find someone that will do it or someone that is willing to look into it to do them. Hmmm let me know how you go with it all :)

[Bella Spirit]

Yeah she new quite a lot about the injections. She doesn't rate them very highly though. But then again what would she know lol :lmao:
She says they are very much like botox. They temporarily fix the bladder and are very expensive.
I really hope she looks into it and comes up with something :) I think the injections sound very positive despite what she says :lmao:

[haylee86]

I did not pay a cent when it come to the injections. Had them all through the public system thankfully. You will find that everyone is different and the injections work for some and not for others. They worked for me :) and thats why im trying to get them again. Yes they temporarily fix the bladder but what will completely fix the bladder anyway? But oh let me know what she comes up with :)

[Bella Spirit]

Yeah I didn't take what she said as 'gospel'. GP's usually don't have a clue anyway.

What I understand of these injections is that they 'fix' the bladder so to speak and then it is up to you to keep it 'fixed'. So you wouldn't go and have 10 coffees the day after or anything like that. Is that how they work?

I think they sound fantastic. Hopefully the doctor will have a heart and try and find out for us. I'll keep nagging her :)

[haylee86]

Are you talking about your normal gp or a urogyno? only reason i ask this as the urogynos might know who is doing it a bit more then the normal gp and im suprised even some gp's dont know what ic is.

As for the injections i dont think they fix the bladder as nothing does. It just helps with inflamation of the bladder and etc. I have had 3 injections and im not fixed. I think its more it helps for a while as long as you have a good ic diet then you most probably need top-ups. But im still learning all sorts of things when it comes to ic treatment and im trying to find the best that suits my bladder (which i have heard is bad). I think ic is so different every person and i think some treatments may work for some and not others. i belive in this treatment and if i can find it in wa then ill getting it! and it would be good if you can too. At least you have an option of trying and seeing if it can help you at all.
But anyway how was everyones weekend?

[jmfedor]

Hi Guys,

I had a great painfree weekend, especially good when it is ANZAC day, being ex Army I did the dawn service and the march in Town. It was hard not to have a drink, as this was my usual ANZAC day ritual, but I must remember that the less rums I have now the more my bladder will heal.

Sometimes I wonder if my bladder was damaged from all the running and the long pack walks that I used to do, with all that pressure bearing down on my lower body (approximately 30kg). It would really be nice to pin point how this happened.

Haylee if you got the damaged bladder so young do you have any idea how and why? does your Mum suffer from any of these problems

Jules

[haylee86]

Hi Jules, umm i first got diagnosed at 17 with endo and got all that cut out, but was still in pain so they sent me to a urogyn and at 18 i got told i had bad ic. Im thinking the reason why i have ic is because i would hold my bladder for hours on end at school. I never drank much water or anything for that matter. And i think i damaged it that way. But i have no family history with it but i know that my mum and nan suffer really bad from not being able to hold. But no pain with them so they think its just old age. I know its not really food based as i can eat most things and not have pain. I can eat tomatoes like they are going out of fashion. I can drink most things and not cause pain at all. But im not sure if its still affecting my bladder even if i dont feel it. I think im pretty luck with my ic as some ic paitents have very bad syptoms and i dont. But i have been told by 2 doctors that mine is the worse they have seen. It will be interesting to see what the docs say in perth as to how bad it really is. But one thing i know i should be doing is drinking more fluids but i think after having it for so long in the back of my head i think if i drink i go to the toilet way too much and thats a pain in the bum, so i dont drink. Which i know is bad. Other than that im just not to sure on it all just yet even though ive had it for a few years.

[Bella Spirit]

Haylee, I asked the 'normal GP' about the injections. Sorry to disappoint! :lmao: I don't have a urogyno. They are too expensive for me right now. When I go to the hospital I'll ask the urologist about the injections. We'll find out one way or another ok :)
My weekend was pretty good. We didn't do anything exciting though but still got some odd jobs done and took some much needed time out from the usual stuff. We'll be going away down south in the next couple of weeks for my b'day :)
Your story that you wrote about your IC sounds very similar to mine.
When you were a kid could you hold for like 8 hours? I always did. I never drunk any water either. I ate plenty of lollies and chips though. But I'd always get up during the night.
I don't like drinking liquid much at all now. Propbably only 300ml a day.
My mum, aunt and nan are frequent toilet goers. Mum says 2 hours is as long as she can hold but she doesn't have IC. Mum, my aunt and Nan are all citrus fruit intolerant and can't eat too much bread.
Also I can have big food binges on all IC bad foods and I don't get any symptoms. It is usually when I change my diet, eat less or try and be good is when I feel it. Interesting :lmao:

[Bella Spirit]

Hi Guys,

I had a great painfree weekend, especially good when it is ANZAC day, being ex Army I did the dawn service and the march in Town. It was hard not to have a drink, as this was my usual ANZAC day ritual, but I must remember that the less rums I have now the more my bladder will heal.

Sometimes I wonder if my bladder was damaged from all the running and the long pack walks that I used to do, with all that pressure bearing down on my lower body (approximately 30kg). It would really be nice to pin point how this happened.

Haylee if you got the damaged bladder so young do you have any idea how and why? does your Mum suffer from any of these problems

Jules

What did you do in the Army?

[jmfedor]

Hi Bella,

I was a vehicle Mechanic in the Army for 22 years, but I am not big and butch I weigh 57kg and did my trade easy with all the guys, who were and most are still really good mates.

I must admit that when we were out bush, it was hard to just pull up and go to the toilet in the bushes, I used to hold on all day until we finished our patrols and then I would either did a hole to use as a toilet (back in the old days), but now they take portaloos out bush to make it easier for all the girls.

When I joined there wasn't many girls around (especially Mechanics), so you just did what the guys did, except it was a bit easier for them to go to the toilet in the bush.

It sounds similar to what you and Haylee did, it just took me a bit longer to get the IC but my bladder finally wore out.

Jules:cussing:

[Bella Spirit]

Hi Bella,

I was a vehicle Mechanic in the Army for 22 years, but I am not big and butch I weigh 57kg and did my trade easy with all the guys, who were and most are still really good mates.

I must admit that when we were out bush, it was hard to just pull up and go to the toilet in the bushes, I used to hold on all day until we finished our patrols and then I would either did a hole to use as a toilet (back in the old days), but now they take portaloos out bush to make it easier for all the girls.

When I joined there wasn't many girls around (especially Mechanics), so you just did what the guys did, except it was a bit easier for them to go to the toilet in the bush.

It sounds similar to what you and Haylee did, it just took me a bit longer to get the IC but my bladder finally wore out.

Jules:cussing:


Vehicle Mechanic! RESPECT :bow:
That would have been difficult at times especially being in the bush like you said. Typical that they got the portaloos out YEARS LATER :cussing:
It sounds like the guys understood though. And guys are good like that :)

My husband is a mechanic and so is my brother.
I worked at Repco for years :)

[jmfedor]

Hi Bella,

Sounds like you know a bit about mechanics since you are surrounded by them.

It a good job but when you get older you lose interest (as a female anyway),

but had a great time and the trade always comes in handy.

Jules:toilet: