Interstitial Cystitis - time to give up?

[blondchen]

Hello!
We have an almost 5yo sow, Cupcake, who has been dealing with IC for almost a year, with periods of normalcy alternating with flares...until recently, when the "flare" state has become the new normal. We’ve tried just about everything there is to manage her condition: antibiotics, meloxicam, gabapentin, tramadol, cosequin, potassium, and now adequan shots. Currently she’s on all of that except antibiotics and cosequin (vet stopped cosequin due to starting adequan). Her symptoms are whimpering when peeing/pooping and occasionally arching and squeaking. She also has sludgy pee. She rests a lot, sometimes in a “flopped” position that seems to indicate discomfort, but we can’t tell for sure. (Her sister rests a lot too, so maybe that’s just age.) We used to see some blood in her urine but it’s been a couple of months since the last blood episode. The vet has ruled out stones several times via x-ray and ultrasound - last time was in July.

That said, Cupcake eats well, though with limited variety now (lettuce, bell pepper, Timothy hay, some Oxbow pellets) and has consistently maintained her weight of 1kg. Except when peeing/pooping, she seems content, even happy at times, chutting around the cage with her sister, and she gets excited and comes to beg when veggies or pellets are served. If she’s in constant pain, she hides it well (which I know piggies try to do).

My issue is this: According to our vet (who is a knowledgeable exotic vet), the Adequan shots are pretty much the last treatment we can reasonably try for chronic IC, and now after a month of weekly shots, they don’t seem to be helping at all. The vet said to do another couple of weeks, but if she doesn't show improvement, we need to have a different conversation. He’s open to trying other things that have been shown to have a low chance of success, but those might not be worth it for us or for Cupcake. Obviously we’re very concerned about her overall quality of life, and we don’t want her to continue living with this condition if she’s unhappy and often in pain, with no expectation of improvement. It's heartbreaking to hear her whimpering multiple times a day.

I’d really appreciate any thoughts from those of you with more experience with this. I’ve read a lot of posts in this forum about IC, but at this point I'd love some more specific feedback on my situation before talking with the vet again.

Thank you!
Mary Beth

 

[Wheekallweek]

Poor baby Have you tried glucosamine at all? It can be useful in lining the bladder.

 

[Wiebke]

Hello!
We have an almost 5yo sow, Cupcake, who has been dealing with IC for almost a year, with periods of normalcy alternating with flares...until recently, when the "flare" state has become the new normal. We’ve tried just about everything there is to manage her condition: antibiotics, meloxicam, gabapentin, tramadol, cosequin, potassium, and now adequan shots. Currently she’s on all of that except antibiotics and cosequin (vet stopped cosequin due to starting adequan). Her symptoms are whimpering when peeing/pooping and occasionally arching and squeaking. She also has sludgy pee. She rests a lot, sometimes in a “flopped” position that seems to indicate discomfort, but we can’t tell for sure. (Her sister rests a lot too, so maybe that’s just age.) We used to see some blood in her urine but it’s been a couple of months since the last blood episode. The vet has ruled out stones several times via x-ray and ultrasound - last time was in July.

That said, Cupcake eats well, though with limited variety now (lettuce, bell pepper, Timothy hay, some Oxbow pellets) and has consistently maintained her weight of 1kg. Except when peeing/pooping, she seems content, even happy at times, chutting around the cage with her sister, and she gets excited and comes to beg when veggies or pellets are served. If she’s in constant pain, she hides it well (which I know piggies try to do).

My issue is this: According to our vet (who is a knowledgeable exotic vet), the Adequan shots are pretty much the last treatment we can reasonably try for chronic IC, and now after a month of weekly shots, they don’t seem to be helping at all. The vet said to do another couple of weeks, but if she doesn't show improvement, we need to have a different conversation. He’s open to trying other things that have been shown to have a low chance of success, but those might not be worth it for us or for Cupcake. Obviously we’re very concerned about her overall quality of life, and we don’t want her to continue living with this condition if she’s unhappy and often in pain, with no expectation of improvement. It's heartbreaking to hear her whimpering multiple times a day.

I’d really appreciate any thoughts from those of you with more experience with this. I’ve read a lot of posts in this forum about IC, but at this point I'd love some more specific feedback on my situation before talking with the vet again.

Thank you!
Mary Beth

BIG HUGS

It very much sounds like you and your vet have done and tried all you can. Adequan is a high strength arthritis treatment for dogs that is comparable to the cartrophen we usually recommend in the UK.
There is one step further that one forum member has tried in recent years, supported by the research from their own vet, which was to give glucosamine in addition to the cartrophen. In their case, it did the trick. That is as far as I know the medical boat can be pushed out in terms of sterile cystitis. The severe far end is sadly still out of reach. You may want to discuss it with your vet and see whether it also works for you.

As long as the weight is stable when you weigh on your kitchen scales first thing in the morning, the pain cannot be too bad yet. It is a stinging pain when highly corrosive urine comes into direct contact with raw tissue where the natural isolating glucosamine has thinned too much.

I sincerely hope that this helps you.

 

[blondchen]

Poor baby Have you tried glucosamine at all? It can be useful in lining the bladder.

Yes. That's what the Cosequin is (US brand), but she took it for a couple of months with no improvement, which is why we're trying Adequan (the US alterative to cartrophen).

 

[blondchen]

BIG HUGS

It very much sounds like you and your vet have done and tried all you can. Adequan is a high strength arthritis treatment for dogs that is comparable to the cartrophen we usually recommend.
There is one step further that one forum member has tried, supported by the research from their own vet, which was to give glucosamine in addition to the cartrophen. In their case, it did the trick. That is as far as I know the medical boat can be pushed out in terms of sterile cystitis. The severe far end is sadly still out of reach. You may want to discuss it with your vet and see whether it also works for you.

Ok, I'll ask the vet about that. Thank you!

 

[Merab]

Just want to add my support for you

 

[Wheekallweek]

Yes. That's what the Cosequin is (US brand), but she took it for a couple of months with no improvement, which is why we're trying Adequan (the US alterative to cartrophen).

I see, apologies

 

[blondchen]

I see, apologies

No apology needed! In my haste, I neglected to thank you for posting, so my apologies for that!

 

[blondchen]

The vet said to start the Cosequin again.

 

[Wiebke]

The vet said to start the Cosequin again.

Could you ask your vet whether using Cosequin and Adequin in combination was OK to trial for Cupcake in order to see whether this would give her more quality of life.

You are operating at the cutting edge of sterile cystitis, so getting more feedback on whether that edge can be pushed out that little bit further may help more piggies down the line.

 

[blondchen]

Could you ask your vet whether using Cosequin and Adequin in combination was OK to trial for Cupcake in order to see whether this would give her more quality of life.

You are operating at the cutting edge of sterile cystitis, so getting more feedback on whether that edge can be pushed out that little bit further may help more piggies down the line.

He's combining the Adequan (weekly for now) and the Cosequin (250mg daily), and we'll see how it goes. He said he stopped the Cosequin because he wanted to test the Adequan without it. At this point we have nothing to lose, and he's amenable to trying whatever might help. I'll post here when we know more.

Thank you!

 

[Wiebke]

He's combining the Adequan (weekly for now) and the Cosequin (250mg daily), and we'll see how it goes. He said he stopped the Cosequin because he wanted to test the Adequan without it. At this point we have nothing to lose, and he's amenable to trying whatever might help. I'll post here when we know more.

Thank you!

Thank you. We are always grateful for any feedback because that can influence any future advice. We rely on member experiences with what works and what not, so to hear about your personal experience and general feedback matters to us and guinea pigs down the line.

As long as Cupcake is still eating, maintaining her wait and is living a normal life, she has enough quality and will to live. Metacam may help with the pain.

I am keeping my fingers very firmly crossed that the combination is making a difference.

 

[blondchen]

As long as Cupcake is still eating, maintaining her wait and is living a normal life, she has enough quality and will to live.

This is encouraging to hear. I've been thinking that her quality of life is poor enough to consider pts. But maybe it isn't...

Metacam may help with the pain.

She's already taking .66ml of dog metacam twice a day, plus tramadol and gabapentin. It's frustrating that all those meds aren't doing enough. I'm not sure we can increase the pain meds, but I guess I can ask the vet if he's willing to do it as a last resort. I do hope the Adequan+Cosequin will work!

 

[Wiebke]

This is encouraging to hear. I've been thinking that her quality of life is poor enough to consider pts. But maybe it isn't...


She's already taking .66ml of dog metacam twice a day, plus tramadol and gabapentin. It's frustrating that all those meds aren't doing enough. I'm not sure we can increase the pain meds, but I guess I can ask the vet if he's willing to do it as a last resort. I do hope the Adequan+Cosequin will work!

So do I!
Unfortunately, sterile cystitis is a comparatively new kid on the block. It comes on a whole spectrum from the very mild to the very severe that can lead to death in a matter of days.

We are still working on trying to push the medical boat out further but like with cats, at the upper end (which you are unfortunately dealing with) there is still only so much we can do yet - anything stronger is still out of medical reach.

I truly wish I had better news. But I am keeping my fingers very firmly crossed for you.

HUGS

 

[blondchen]

Many apologies for not posting an update on Cupcake until now. My mother passed away shortly after my last post and then I completely forgot about posting an update here.

We decided to discontinue the Adequan shots, because they didn't appear to help, even when combined with the Cosequin. That was very disappointing, but on the other hand, the vet palpitated her bladder at the time and said that she didn't even flinch, so the assumption is that her bladder isn't chronically inflamed and that she probably has a good-enough quality of life overall. She seems to be in pain for the few seconds when she's actually peeing, and it's not every time. Otherwise, she's maintaining her weight and seems like her normal self. So, we and the vet agreed to just medicate her to manage the symptoms, with increases as needed for flares. It's a lot of meds, but we're thankful that she's still with us.

Thanks to all of you who offered advice and/or encouragement. It was just what I needed at the time.

 

[Merab]

Thanks for the update on Cupcake.
Glad the news is more positive.
So sorry about the loss of your mother.
Be gentle with yourself.
Holding you in my heart