I used asacol before my surgery and use canasa off and on now. Not any more! I can't let this get worse. Thanks for the heads up.

TE Marie, So sorry you are having these problems. Mesalamine is in pentasa also and I believe all the 5asa drugs(my daughter takes pentasa and has been on a 5asa since they first came out, over 15 years ago maybe)
Is there anything that can be done for you?

I don't know if it's affecting you or not badguts. Did your doctors consider it along with the Flagyl? I'm not sure this is the cause but I've printed out 2 different documents to show my neurologist. I take Flagyl when I get c-diff infections but the neuropathy started years ago and just gradually got worse. All the time I was taking Asacol up to 12 pills a day.

He put me on a medication that got rid of the pins and needles feeling but the numbness and pain part is always there. Sometimes it's better than worse but he says it isn't reversible.

Is Becky having any problems like this? I hope not.

It is possible I suppose, but it is a reach. Reports of peripheral neuropathy associated with mesalamine are very rare, like 0.02%. the only article I found of a case report indicated that the symptoms resolved when the drug was stopped. There are many, many causes of peripheral neuropathy, some idiopathic.

But, if you think this is the key, it would be simple enough to stop using Canasa, and use HC suppositories instead. If it was the mesalamine, your neuropathy should then improve.

Good luck!

Jan

The Neurologist says the damage is not reversible. I found quite a bit under mesalamine causing it as an uncommon side effect. This started up and gradually got worse over the years so to me it fits but I'm not a medical professional like you and my doctor.

All I know is it seems as I keep ending up as the one in the percentages like the 4% out of 100% that get the problem, cuffitis. and whatever gets IPS and cuffitis. And what percentage gets c-diff, cuffitis and IPS. So it's no surprise to me that I got neuropathy from the tons of Asacol I took. This is the pain that keeps me from functioning. It's embarrassing using a cane too but after a few bad falls I'm using it.

Could you post one of the articles you saw that said it could be permanent? Nearly all of the literature citings I saw only said it was a rare side effect, but no mention of the permanence. I found two case stdies discussing the side effect and they both were temporary. I just thought that since you still use it, the only way to know for sure is to stop taking the mesalamine suppositories, then wait and see. It could take months or years to resolve, if it is going to. Just trying to offer some hope.

http://www.ncbi.nlm.nih.gov/pm...f/bmj00258-0054b.pdf

http://www.ncbi.nlm.nih.gov/pubmed/12763355

Jan

It is just listed as a rare side effect and says nothing about being permanent, sorry. My Neurologist said the damage is permanent. I'm going to read this articles. Thank you so much for finding them for me Jan. I can show them to the doctor. I hope you are right. I went off Asacol 2.5 years ago and the neuropathy hasn't done anything but get worse if that. I haven't been on the Canasa the entire time either, not even half. I was half hoping it's the cause so I could quit worrying about my hands.

If the neuropathy started while you were on the Asacol, then it certainly is a possibility. But, if it started after you stpped the Asacol, I think it is highly doubtful to be related.

About the permanent vs. temporary issue, I would imagine it is the same or similar to Flagyl. With Flagyl, it is temporary, but if you keep taking it once this side effect shows up, then eventually, the damage can become permanent. It is highly individual.

My main point is that even though you no longer take Asacol, if you think that mesalamine is the cause of your neuropathy, even taking Canasa part time could lead to worsening of the damage. So don't think that it cannot get any worse. It is not as if you could not use hydrocortisone suppositories instead.

You are actually lucky if you find a cause for your case, even if it is only partially contributing. That is because they often do not find a cause and it is completely idiopathic.

Sometimes decades go by before they learn of an adverse effect of a drug used long term. An example is Reglan, used for gastroparesis. Long term use, especially in women, has been found to cause Parkinson type symptoms, sometimes permanent. Sometimes full blown Parkinsons develops later on. So the thinking is that the drug may simply reveal an inborn weakness of the nervous system and causing early symptoms of an inevitable disease.

Not fun, any way you slice it.

Jan

Hi Jan,
Well they don't sound like me since I had no problems in the beginning, maybe the devil drug prednisone masked it. I probably was on it for 4-5 years before I had and foot problems. So there probably is no cause and effect, right? I'm an accountant I keep trying to make things logical. Like there was some little beaker in my body that could only hold so much and when it got full of the mesalamine it tipped over and started causing neuropathic damage to my feet. Like alcohol does the liver. It takes a while before it damages it. See why I picked the right profession?

BTW I passed the nerve test, electrical that they talk about in this first link, to the back of my lower legs, calves 2 times. First time I'd guess 2003 and last time end of 2011. That's why no one sent me to a Neurologist until I got the migraine headaches and I complained about my feet too. What about that?

I've got them ready for my next doctor's appointment. He's not very talkative but I am

I presume you are talking about nerve velocity studies (NVS) and electromyelogram (EMG) where they attach electrodes to test your nerves conduction of electrical impulses through your muscles. A negative test does not mean there is no problem. It just means there is no permanent damage of the major nerves.
http://www.atlantamedcenter.co...und-care-center.aspx

I "passed" my tests when they were trying to figure out why I was having tingling and numbness in my arms. That ruled out carpal tunnel and cubital tunnel syndromes. MRI of the neck confirmed nerve compression at the neck. But, after reducing muscle spasms and inflammation, the symptoms subsided. Now they are very intermittent.

When the symptoms are constant, then the damage is more likely to be permanent.

Anyway, I get the notion of wanting to "blame" a disease or symptom on something, but the reality is that if you are prone to one autoimmune disorder, it is not unlikely to get another. I know it sucks, but it seldom is as simple as a single drug caused it (just like UC). But, if you can improve your outcome by simply avoiding a drug, it is worth looking into.
http://www.nlm.nih.gov/medline...y/article/000593.htm

Jan

Thanks Jan, the second one is really good. Sounds like when I say "my muscles turn to jello" when I fall, among other good information.