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pentasa and feet

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Crohn's Disease
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Posted 6/17/2008 10:56 PM (GMT 0)
Does it happen to anyone else....When I try to take pentasa tablets...

1 of the side effects is my feet hurt and feel weird?

Any comments would be great

Thanks

Carmen

Posted 6/17/2008 10:59 PM (GMT 0)
wow..no that hasnt happened to me...I just get bad heartburn/indigestion with pentasa
Posted 6/17/2008 11:08 PM (GMT 0)
I get a wierd tingling feeling sometimes, but not pain.  I think my potassium might be low when that happens though...I have been on Pentasa 4g per day since January...

Posted 6/17/2008 11:50 PM (GMT 0)
I have tried pentasa on and off. When I stop it due to the side effects , the weird feet feelings go away
Very strange..

Thanks
Carmen
Posted 6/18/2008 1:30 AM (GMT 0)
I wonder if it is some weird neurological reaction. Ask your doctor if it can be a dangerous side effect, if not and the Pentasa helps, it may be worth it. I am losing my hair from the Pentasa, but my GI symptoms are doing well, so I don't want to give it up.
Posted 6/18/2008 2:29 AM (GMT 0)
Ditto gumby - not to hijack the thread but did your hair loss start w/ the med or after taking it sometime? I was on it over a year with no problems and then after a bout of entocort the hairloss started. It has been 2 years since the entocort and the hair is falling out so now I am thinking it is the Pentasa. But, I think it is really weird that the hairloss didn't start when I started the med.
Posted 6/18/2008 2:37 AM (GMT 0)
Kasper - it has helped me beyond words.
Posted 6/18/2008 3:33 AM (GMT 0)
I have to agree with Kasper on this one.

Carmen-Do you see a Rheumatalogist at all?

All others- Has anyone else noticed the reaction with there feet while taking 6mp or Imuran?
Posted 6/21/2008 6:09 AM (GMT 0)
Yeah, i've been a long time user of Pentasa...off and on now for like 6 or 7 years. over that time i've probably used it 25% of the time. My GI doctor doesn't think it works that well...and tells me to stop taking it. however, when i do start taking it, I either stay the same or get better. so in my opinion, I should be taking it. its just hard to take them every 4 hours or so...which reminds me, I seem to only notice any slight improvements when im taking pentasa at a full dose...1g four times a day.  So when i feel sick, and I am more so than previously, I try to take it full dose. In my opinion...its either full dose, or your wasting your time.
Posted 6/21/2008 1:56 PM (GMT 0)
I heard a CCFA teleconference, and the presenter said that you can take Pentasa twice a day instead of 4 times a day as previously prescribed. I do think the Pentasa is responsible for my hair loss, but I'm 49, and it is possibly hormonal, from perimenopause. I have read studies that say Pentasa does not help Crohn's disease, but it seems to be helping me, so I'm sticking with it. I have to wear hats everywhere in the summer or my scalp gets burned! I have a physical with my PCP in July, and I plan to ask if Rogaine can help. I only take 2000 mg per day, but my Crohn's is mild compared to a lot of people.
Posted 6/28/2008 12:58 PM (GMT 0)
I'd be interested to see if anyone else has suffered hair loss or any other side effects while on Pentasa?
Posted 6/28/2008 3:28 PM (GMT 0)
Before my resections I always used Pred and Pentasa to control my flares. Pentasa always worked well for me. Since my resections I am maintained only on Asacol. And I know its working because one time my doctor told me I could stop taking it after my second resection and I ended up getting sick. Went back on it and I am doing well again.

For some these drugs don't work, but others they work great. I could be wrong on this, but I think it seems to work well in those with milder forms of Crohns and the stricturing type of Crohns.
Posted 6/28/2008 9:06 PM (GMT 0)

broomhilda said...
I have to agree with Kasper on this one.

Carmen-Do you see a Rheumatalogist at all?

All others- Has anyone else noticed the reaction with there feet while taking 6mp or Imuran?

I could not tolorate the Pentasa so I wasn't on it very long. 

6mp made my feet and ankles very stiff and hard to walk at times.  But it worked wonders for me

while I was on it for a few years. 

Posted 6/29/2008 4:13 AM (GMT 0)
pentasa has been a great drug for me. I think it helped clear my small intestine along with 6 mp (which I can no longer tolerate). I have had no side effects from pentasa at all. I take 4000mgs---4 big green capsules twice a day. I was taking 16 little capsules but the bigger ones are fine.

I wonder if the foot pain is due to low potassium. And for the hair loss, have you tried anything with folic acid or a B complex? Won't cure but could help.
Posted 6/30/2008 9:23 PM (GMT 0)
No, I haven't had any feet reactions  but I also get a terrible burning/heartburn feeling when I take it.

Posted 7/1/2008 6:55 AM (GMT 0)
Throughout most of my life I have been on Prednisone and no major side effects. However, when mixed with the Entocort or Pentasa, Hairloss was a major problem.
I lost 90% of my hair. Due to a bad "cocktail" of medications...
Be careful as I have been told a lot of people are allergic to Pentasa and dont have and MAJOR smptoms. I began vomitting after taking the perscription after about a year.
Foot pain may be a SMALL thing to let you know the med may not be right... It might be perfectly fine, but just dont let it go, keep an eye on it! Good Luck!
Posted 7/1/2008 6:59 PM (GMT 0)
I have one foot symptom….   I have numbness in my left big toe. I have been off Imuran for a week so it could have been that or the pentasa or entocort.   I read that low b12 can cause that and I was tested at 202 for b12 when 200 is low. So far the numb toe has not gotten worse and not sure if it is better.   I am hoping the stopping of Imuran or when I finally get to stop entocort and Pentasa when the humira kicks in will make the numb toe problem better.   I also have hair loss and am noticing it more lately so I am very anxious to stop pentasa just in case it was also causing hair loss.   Karen
Posted 7/2/2008 9:41 AM (GMT 0)
I've been taking pentasa with food but last night I took it 3 hrs after eating, on an empty stomach, and I was nauseous and dizzy for an hour.  then later, my toes on both feet felt numb.  then I read that it's better to take with food, esp. if you get nauseous when taking it.  I don't know whether the numbness was from a "higher" dose of pentasa in my blood taken on an empty stomach, or if it set off a chain reaction with the nerves in my abdomen, but it was definitely pentasa related.  as I sit here now, the tops of my feet feel hot.  I'm taking vitamins, so I don't think it's my B levels, and it wasn't one of the side effects listed that I've found.  maybe there's a subset of patients who do get a reaction, but it's not public knowledge or they don't know why.

Posted 7/5/2008 5:39 AM (GMT 0)
I have been on Pentasa since September and I think it helps a lot. However, the soles of my feet do feel swollen or numb quite a bit. I may be because I'm on my feet so much, but it could also be the medication or the illness itself causing it.
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