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tremors while on pentasa

by hazel
(pa)

I have been on pentasa for just over a month now for Chrons and developed tremors/body shakes.

Family doc sent me to e.r. when I called to be seen by him for sudden shakiness, headache, dizziness and general feeling of something being off.

After a cat scan, mri, bloodwork, and overnight stay at the hospital I was told this can't be from pentasa(by a neurologist) and then informed it must be stress and maybe valium or anti depressants might help. Valium might help take the edge off when dealing with ignorant "professionals" who are clueless about my disease, but doubt it cures side effects!

I then called my gastroenterologist(didn't consider him first because symptoms seeemed like family doc problem to me)and have yet to hear back from him(did call late in day) but the person who took my call said they doubted it was the pentasa because side effects show up sooner. BTW that's bad info the info I found was in reported cases of tremors and pentasa 100% deveoped them 1-6 months after starting the drug.

I then(too little too late I know) researched more heavily online and have found many sources stating tremors are a rare side effect of this drug.

I am trying the unique cure of stopping the pentasa to stop the tremors. I refuse to take a bunch of other pills to "cure" a side effect no matter how rare.

I am posting this so if anyone else has this problem they know they aren't the only one, and its not stress or anxiety. Also if anyone else has experienced this I would be interested to hear about it-- more proof for the medical geniuses I currently deal with.




Comments for
tremors while on pentasa

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Dec 19, 2011
 tremors while on pentasa NEW
by: Lydia D.

If there is one thing that doctors are clueless about it is side-effects.

I had real tremoring - Parkinsons-like when I was on Prednisolone and Pentasa. At the time, I attributed it to the Prednisolone, but it might have been the Pentasa. I did stop the Pentasa due to chronic headaches and at the same time titrated down the Prednisolone and the tremoring disappeared.

For side-effects of medications, I refer you to: www.drugs.com www.rxlist.com

Caveat: As good as the above data bases are, they still don't necessarily list all the potential side-effects.

www.drugs.com has a great interactions checker.
Dec 08, 2011
 update NEW
by: Hazel

Just a quick update, my g.i. doc got back to me and did agree that I should be off Pentasa. Although he didn't think the tremors could be from it. The tremors are gone now that I am off the pills. This is a cautionary tale for anyone taking medication, rare side effects exist and someone has to be the first to report them, then many more have to experience them AND report them for them to become"known" side effects.
It's your body you know it best. The reason you see commercials stating "if you took drug xyz and experienced death and dismemberment" is because the only way to know the really bad rarest side effects is for lots of people to take them.
All medications have good, I loved the effects of pentasa on my crohn's until I looked like a junkie in withdrawl! Anyone on any medication has to be their own advocate if something doesn't seem right.

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