Does Pentasa cause kidney / back pain?

[Eternal_Howl]

Just started a short course (short because I won't be able to afford the prescription and was given samples and told the dosage) of 500mg capsules at 2 x 4 daily.

Started noticing back pain around kidneys. It's constant. Can't reach the doc. It's not severe, but I assume this is from the pentasa and not the prednisone. Had prednisone briefly last year. Started that yesterday: 10mg once a day.

Any clues/takers?

 

[Axelfl3333]

I,ve been on pentasa for 2 years with no side effects.i,m curious about the cost thing we don,t pay for prescription meds in Scotland but I asked the pharmacist how much a box of pentasa costs £30 or about 50 dollars.your back/kidney pain I,d phone your dr.

 

[Eternal_Howl]

I,ve been on pentasa for 2 years with no side effects.i,m curious about the cost thing we don,t pay for prescription meds in Scotland but I asked the pharmacist how much a box of pentasa costs £30 or about 50 dollars.your back/kidney pain I,d phone your dr.

Hi Axel,

Over night the pain has lessened a bit. I'm pretty sure it wasn't the prednisone. I'll make a note if it continues today while I'm out and about. I've only got a six day supply - I can't afford the prescription. It's not feasible long-term, so will start taking turmeric and black pepper when this is gone, but it may help.

I used to live in New Zealand and we had $3 prescriptions that would cover you for up to 3 months - so while there was a nominal fee, it definitely shielded me from what I just saw here in the US. I've heard of costs like this, but never have I seen them first hand.

 

[Patricia56]

The 5ASA meds are notorious for having sometimes severe side effects.

Renal problems are listed among the post-marketing side effects but are very rare.

If the pain is more in the upper center and spreading around to the left side and back then it may be pancreatitis. This usually has severe pain but for my son it took a few days to fully develop. This is also listed as a possible side effect of pentasa.

I would check in with your doctor about it right away.

 

[Essieluv]

Kidney side effects are rare, but not impossible. Either way, if your pain doesn't go away, or gets worse, get it checked out. It's always best to let your doc know of any new symptoms, especially after starting new medication.

 

[ChicagoMom]

My daughter did have some back pain when she first started Pentasa but it only lasted for about a week. She's been on it for about nine weeks now.

Pentasa is expensive. Have you looked into this program? http://www.shire.com/shireplc/en/patient-support
They offer prescription assistance for Pentasa.

Good luck!

 

[Eternal_Howl]

My daughter did have some back pain when she first started Pentasa but it only lasted for about a week. She's been on it for about nine weeks now.

Pentasa is expensive. Have you looked into this program? http://www.shire.com/shireplc/en/patient-support
They offer prescription assistance for Pentasa.

Good luck!

Thanks for the reply. Yes, it is horrendously expensive. I got some samples, went to fill the prescription and just about died when I read what it was going to cost and it's not covered by my insurance, so once this is gone, I have to go to an alternative route, which may be helpful. But I'll look at the program. The back pain around the kidneys has died down significantly. My body probably had a bit of a shock when I started taking it.

 

[Patricia56]

glad to hear you're feeling better.

 

[Patricia56]

You can challenge the denial by your insurance. And if they still deny it you can take it to the State board that oversees health insurance companies. People often win at that level when they haven't made any progress with their insurance company but not many people ask for State adjudication.

 

[Eternal_Howl]

You can challenge the denial by your insurance. And if they still deny it you can take it to the State board that oversees health insurance companies. People often win at that level when they haven't made any progress with their insurance company but not many people ask for State adjudication.

Thanks for that information, Patricia. I'm honestly not that 'up' with it on how insurance works in this country, having only had insurance for 2 out of the 5 years I've lived here and not requiring specialists and treatments before recently). I went onto the insurance website last night and found some lower cost generics. I generally do well on generics, although can't speak for this medication. I might try that route first, if my doctor agrees. He probably wanted me to have the best because I clearly have a serious case of thickening in my intestine and need to retain what 'opening' I have left to avoid surgery. Either that, or he's getting kick-backs, but I think that's illegal, so I doubt it. The specialist I'm seeing has written a Probiotics for Dummy's and has a probiotic on the market, so I would think he's informed about alternatives in the generic market as well as the natural one.

 

[Patricia56]

Frankly Pentasa and the other 5ASA meds have been found to be pretty useless in bringing about remission. A recent large study found them to be no better than placebo. So I would be questioning why your doctor is putting you on them especially if they are the only med being prescribed.

If you have moderate to severe CD most people are on immunosuppressants or biologics. 6-MP or Methotrexate are immunosuppressants. Remicade, Humira, Cimzia are among the biologics.

 

[Eternal_Howl]

Frankly Pentasa and the other 5ASA meds have been found to be pretty useless in bringing about remission. A recent large study found them to be no better than placebo. So I would be questioning why your doctor is putting you on them especially if they are the only med being prescribed.

If you have moderate to severe CD most people are on immunosuppressants or biologics. 6-MP or Methotrexate are immunosuppressants. Remicade, Humira, Cimzia are among the biologics.

Well I'm still pretty new to all this, but I think the intention behind it was putting me on Pentasa to stop reduce existing inflammation and prednisone to stop an immune response. Prior to the scopes I'm getting next week, the doctor said that I probably have an opening in my intestines between 5-7mm. The agile capsule (the dummy pill preceding the pill cam) got stuck.

 

[Patricia56]

Ah you are very early in the diagnostic process. I hope your scopes go well next week.

 

[Eternal_Howl]

Ah you are very early in the diagnostic process. I hope your scopes go well next week.

They tried diagnosis years ago, but they couldn't find a cause. Different country and probably a few more years have gone by and so IBDs are becoming more differentiated etc. Thanks. Me too. My biggest concern is the colonoscopy, that the laxatives actually fully work this time.

 

[Patricia56]

You can help that along by going on a soft foods/semi-liquid diet for a couple days ahead of time. In fact going to a liquid diet of complete nutritional substitutes like Ensure or Boost may help your symptoms a lot over the next couple of weeks. No food just drinks.

 

[Essieluv]

Avoiding high fiber and harder to digest foods starting a week before your scope should help with the prep. Good luck, let us know how everything goes.

 

[Eternal_Howl]

Avoiding high fiber and harder to digest foods starting a week before your scope should help with the prep. Good luck, let us know how everything goes.

Thanks! Hoping for some good test results - meaning that I'm cleaned out. God I hope the laxatives work this time!