Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Anyone else have these problems?

Hi,

Please read this and do n't dismiss me as a looney......I know I have abeef about nsaids, but it's for a reason. Many especially the oldies who faced the nsaid smarty boom in the 80's have learnt the hard way. Hence people like Dragon Slayer preach about them so hard!

I had a rough time on feldene, lots of funnies like this early on and I've spent some time researching as this is the time when everything really changed and I went from being achy sore stiff, to being pretty sick for most of my life.....

The mouth ulcers do they start as little balls under the skin of the check or gum and then they burst and get sore.

The attitude of your GP was much like mine was, I can forgive mine because the research had n't been conducted, but in the 21 st century, it's appalling!

Get off the feldene. I could write a whole book on the whys's but feldene is widely suspected of being a trigger or a least an acclerant of the complex IBD/SpA/AS, please believe me, I've spent along time researching this drug and for good reason.

Phzier actually have a paper out that details alot of the issues.

You should also check out steve jones syndrome........

Your mouth ulcers may not be caused by feldene but they are certainly worsened by them, think what's happening in your GI tract. 60% have GI lesions of chron's often without symptons. I bet you carry on taking feldene with what you have described you will develop full chron's or ulcerative colitis. Please do n't do that!

At least swap to an nsaid with less GI risk, and the Dr should at least be prescribing something to protect your stomach such as somac. Especially if he thinks it's acid reflux!

Why do most of us have upper and lower scopes on GI investigation because the lesions occur anywhere from mouth to anus!

Sorry for harping,

David

Found this

http://yalenewhavenhealth.org/Library/HealthGuide/DrugGuide/topic.asp?hwid=multumd00343a1

also:

http://www.pfizer.com/download/uspi_feldene.pdf

this drug has some potential interactions with MTX, note the toxicity stuff upper right abdomen and some get white spots in the mouth some dr misdiagnose these as fungal or mediteranean fever!

Edited by davo on 02/06/04 09:11 PM (server time).

Hi,

still harping,

You on mtx?

http://www.pfizer.com/download/uspi_feldene.pdf

I have been getting mouth sores most of my life, but since I started sulfasalazin they have lasted longer and occur more often, usually more than one at a time. They are usually just above or below the lips, but sometimes under the tongue or on the sides of the tongue. I have also noticed bumps on the top on my tongue that sometimes hurt. I hate eating when I have these sores.

Eric,

try folic and vitamins b, c,d, e esp b12

There's lot sof different reasons, are they improving on the nsd/lsd?

David

I've only had them once since I started the LSD. During my next trip to the doctor's I am going to ask her if she has heard of the N/LSD here in Korea and what supps I should be taking other than those you mentioned. I am sure I am getting enough Vit C as I am eating a ton of manderines everyday. Maybe I will do the 3 day maderine diet soon, I just want to hear what the doc has to say. She really hasn't told me anything, I don't even know if I am HBA positive or not. I'll have a lot of questions on my next trip, thanks to all of you at this site.
Eric

Hi Stacey,
Sorry to hear about the problems you are experiencing.
Haven't had much trouble with arm pain, mostly shoulder/joint stuff.
As far as the problems with sores in your mouth...everyone has brought up very good possible reasons as far as meds and using folic aicd to help with it.
I did want to ask though...are you on prednisone or have you ever taken it?
If so, this could be the cause of the pain in your gums and teeth.
I have been on pred for a long time now and it has caused bone loss and my gums were hurting alot. Similar to what you described. Only an xray can tell if that is the problem.
Just thought I would mention this.
Hope you figure out what is going on soon so it can be taken care of.
Hugs,
Lisa

Thanks for the links. I printed them out to take to my doctor. You know. He never mentioned any of this to me when he prescribed the medication (over the phone via a nurse)! I have stopped taking the medicine because I have experienced some of the side effects listed in one of the links - another thing I was never told about. It's funny, I looked into feldene before I took it (WebMD, etc...) but I never found out any of this.

THANK YOU!

Stacey

I am not on MTX. The rhuemy wants me to start it but I said no - too many potential hazards for my yet to be concieved next child.

No, I'm not on prednis... (however you spell that). Thanks though.

I have to say here that I am overwhelemed by the outpouring of concern and the desire to help!! Thanks to everyone!
For the first time, I feel as if someone is actually listening and taking seriously the problems that I have had for so long!

Stacey

Glad you are liking it here. It is a wonderful place and has helped so many people. When I first was diagnosed I had no clue what AS was and what to expect. Felt totally lost, thinking no one would ever understand what I was feeling. But then I found KA and everything changed. I hope you continue to benefit from KA.
Happy to hear that you haven't had to be on prednisone (steroid). Although it is a great drug for inflammation and pain, it has some terrible side effects that are irreversable.
Hugs,
Lisa