Wanted to say thank you for convincing me I need medication

[Malice67]

Finally on Pentasa for my Crohn's - thanks for everyone who gently pushed me in that direction. Will also have laser surgery this week to cauterize some potential sources of bleeding, but without your support, I would have stopped there. I think I was kind of avoiding admitting it was really Crohn's by not pushing for any meds.. if they weren't medicating me for it, it couldn't be bad. But when the anemia returned I knew you guys were right and pushed my GI to go back and look at my Pill Cam results again -- he immediately said "its time to start treating this" and put me on Pentasa. Without you guys pointing out that the inflammation itself causes damage, I may have just let the hematologist keep treating the anemia with IV iron.

Thanks for helping me push for this.

 

[Cross-stitch gal]

Glad to hear that you finally got some results and are slowly getting taken care of. Hope things continue to get better for you and good luck with your surgery. Please keep us updated on how you're doing. :hug:

 

[LodgeLady]

How are you feeling on the Pentasa? Since starting back on it in July I have felt fantastic!! I know my inflammation is mild and maybe that's why it's working so good for me. Hope you get some relief!!

After seeing my primary care he said he needs to monitor my anemia ( borderline normal after a couple of anemic lab results) and basic labs every six months now that I'm on the Pentasa. :hug:

 

[Malice67]

So far no side effects from the Pentasa (only on 2g /day). I was already on labs every 8-10 weeks to monitor anemia which is how they found out it had come back... luckily not too low this time, not as dangerous as the first round where everyone was freaking out because I was at 4.6 hgb. But dropping from 12.3 to 9.8 in 9 weeks time has now put me on a monthly lab schedule... wonder if the addition of the Pentasa factored in to that schedule as well. Is your doctor concerned about things other than anemia in conjunction with the Pentasa?

 

[nogutsnoglory]

Glad to hear that you are going to try to control the disease. I hope Pentasa works great for you and those big chunky blue pills taste delicious haha

 

[Malice67]

Glad to hear that you are going to try to control the disease. I hope Pentasa works great for you and those big chunky blue pills taste delicious haha

they are CRAZY big!!! whose idea was that???

 

[nogutsnoglory]

I know, so many a day and like horse pills. I like the color blue so that helped a little LOL.

 

[Cross-stitch gal]

It took a bit for me to get used to and swallowing those horse pills. At least with that blue color, there's no way to misplace or lose them...

 

[LodgeLady]

So far no side effects from the Pentasa (only on 2g /day). I was already on labs every 8-10 weeks to monitor anemia which is how they found out it had come back... luckily not too low this time, not as dangerous as the first round where everyone was freaking out because I was at 4.6 hgb. But dropping from 12.3 to 9.8 in 9 weeks time has now put me on a monthly lab schedule... wonder if the addition of the Pentasa factored in to that schedule as well. Is your doctor concerned about things other than anemia in conjunction with the Pentasa?

Yes I think your Pentasa prescription has now necessitated the need to monitor your bloodwork. My primary runs the typical comprehensive metabolic which covers a lot of the tests ( anemia, WBC, etc). Plus he is watching the liver lab tests ( enzymes?). He ran a ton of tests this first time but I'll be curious what he runs every six months. I am going to have him include a Sed Rate and CRP for inflammation since I'm getting the blood drawn anyway.

Hope your surgery goes well! Keep us posted !((hugs))

 

[alex_chris]

So far no side effects from the Pentasa (only on 2g /day). I was already on labs every 8-10 weeks to monitor anemia which is how they found out it had come back... luckily not too low this time, not as dangerous as the first round where everyone was freaking out because I was at 4.6 hgb. But dropping from 12.3 to 9.8 in 9 weeks time has now put me on a monthly lab schedule... wonder if the addition of the Pentasa factored in to that schedule as well. Is your doctor concerned about things other than anemia in conjunction with the Pentasa?

If Pentasa is noticeably helping you, the that is great. Do you know where your Crohn's is principally located? I am asking because Pentasa targets superficial inflammation principally in the colon but cannot really help in the small intestine where Crohn's is usually located (in contrast to UC for which inflammation is usually in the colon). While Pentasa has helped people with Crohn's, some studies say it is only slightly better than a placebo.

Similar to you, in the past I had big problems with iron deficiency and protein deficiency that led to chronic anaemia, principally due to low, but constant inflammation that led to malabsorption in the smaller intestine. If you have ongoing symptoms and ongoing deteriorating anaemia due to iron deficiency, inflammation may be present especially in the smaller intestine despite pentasa. As pentasa (a relatively harmless drug compared to others) already was a big step for you, I assume the standard long term meds (6mp/azathioprine or biologics) don't seem to be an option that you want to consider. I still think it is prudent to point out that unless you are in remission without any symptoms or very fee light symptoms, inflammation may be present.

 

[LodgeLady]

Not to disagree with you, but I have read many posts from other sites where Pentasa has helped. It's obviously a low level medication. There is a place for it however. Crohns can move and change in location. To simply prescribe based on current affected inflammation and its location is really limiting its use. The real indicator should be its affects on symptoms. If it works it works.

 

[Malice67]

Surgery went well .. throat hurts which I have never had after an endoscopy before, but they were in longer than usual with more instruments so he said that was to be expected. He did find that where he had removed a polyp in June it hadn't completely healed so he cauterized that as well. Also gave me on weekly lab order (CBC to check for anemia), but said I probably only need to go every two weeks. Made the orders weekly to make it easier to schedule around conflicts and in case I feel a fairly sudden drop in energy.

 

[LodgeLady]

Get well soon! Take it easy and try not to do too much too soon!

 

[David]

If Pentasa is noticeably helping you, the that is great. Do you know where your Crohn's is principally located? I am asking because Pentasa targets superficial inflammation principally in the colon but cannot really help in the small intestine where Crohn's is usually located (in contrast to UC for which inflammation is usually in the colon). While Pentasa has helped people with Crohn's, some studies say it is only slightly better than a placebo.

Similar to you, in the past I had big problems with iron deficiency and protein deficiency that led to chronic anaemia, principally due to low, but constant inflammation that led to malabsorption in the smaller intestine. If you have ongoing symptoms and ongoing deteriorating anaemia due to iron deficiency, inflammation may be present especially in the smaller intestine despite pentasa. As pentasa (a relatively harmless drug compared to others) already was a big step for you, I assume the standard long term meds (6mp/azathioprine or biologics) don't seem to be an option that you want to consider. I still think it is prudent to point out that unless you are in remission without any symptoms or very fee light symptoms, inflammation may be present.

Other than the fact that Pentasa does target the small intestine, I agree with everything Alex_Chris said. Anytime I hear that people with Crohn's disease are only on a form of mesalamine, I cringe. Crohn's is transmural (affects every layer of the intestine) while mesalamine is topical (affects the mucosal layer of the intestines). Treating Crohn's with just mesalamine is like spraying water on top of a coal mine fire. The ground on top might be nice and wet afterwards, but there is fire down below that never got touched.

There's a reason that mesalamine has never been approved for the treatment of Crohn's disease (all prescriptions for it are off label). I'm all for using mesalamine but only as part of a broader treatment regimen.

 

[Malice67]

Other than the fact that Pentasa does target the small intestine, I agree with everything Alex_Chris said. Anytime I hear that people with Crohn's disease are only on a form of mesalamine, I cringe. Crohn's is transmural (affects every layer of the intestine) while mesalamine is topical (affects the mucosal layer of the intestines). Treating Crohn's with just mesalamine is like spraying water on top of a coal mine fire. The ground on top might be nice and wet afterwards, but there is fire down below that never got touched.

There's a reason that mesalamine has never been approved for the treatment of Crohn's disease (all prescriptions for it are off label). I'm all for using mesalamine but only as part of a broader treatment regimen.

So what would you pair with Pentasa?

 

[David]

So what would you pair with Pentasa?

That would depend on a host of variables. When it comes to western medicine, I am a fan of the top down approach though.