Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group indomethacin, diet etc.

I would love to get some info from those who have had success with Indomethacin. I was diagnosed almost a year ago with AS. I like Indomethacin. I take 25 mg. 3 times a day. I don't have any gut issues and it takes care of 95% of my pain. I don't seem to have side effects. I went in to my rheumy and had the blood work. She said that there might be a problem with my kidneys. Has anyone else had this problem?

I wondered about drinking something like "Sport Tea"(check out their web-site) instead of just water. Maybe that would help....

Any suggestions?

I think I might try the no/low starch diet, but it sounds terrible. I take a lot of supplements as well.

I am very active - I hike, bike and paddle board all the time. When the bad weather hits - I will go to stretching classes at the gym.

Holly

i was wondering what was indomethacin? i am on the low starch diet been on it about 7 months i thought it would be hard but its pretty easy its like a routine. i have the same problem during the summer with my blood work with my kidneys and this month the blood work and urine showed i have problems with my kidney and i have kidney disease stage 2-3. They really didnt say much more about it and said we will see and was wondering to if people with a.s. have the same problem. i am going for surgery wed. on my neck to get fusion 4-5 and replace my cage from 5,6 and6,7. and i was also wondering if other people have problems with there neck beginning to small for there spinal cord. my surgereon said he had to replace my neck to make it bigger but i am to young for this predcure. hope everything is alright with our kidneys. sorry for blahing had things on my mind and i been with a.s. for three years and still dont understand it all still. gina

Hello there,

I never took Indomethacin, my father took it for a few years and got a bleeding ulcer. Indomethacin is stronger NSAID, but also has many side effects and many end up with ulcers that take it.

My father switched to Celebrex afterwards and did well with that.

I was on voltarin for year until liver problems... afterwards Naproxen until had further issues with meds.

Best to you,

Tim

Hi zeek - Yes, was on Indomethacin for a while, also on Voltaren, Motrin and a whole raft of NSAIDs. Cut my gut to pieces. Then went on to Celebrex 200mg. Super stuff, until...horrific bouts of GERD/reflux! Then found LDN (low dose Naltrtexone) and haven't looked back. Am also 'sort of' LSD, low starch diet - 'sort of' being the odd potatoe now and again and occasional 'pain au cerea' (grain bread) and rice about once a month (odd). No pasta.

If I need a med for breakthrough pain, I take Paracetamol/Codeine 500mg/30mg.

A fellow spondy over here, and a member of our social group, he took NSAIDs for years. Worked very well for him, until his liver packed up. Afraid it did for him in the end - just a few months ago.

But another spondy, member of the spondy association here, takes only NSAIDs - she is HLA-B27 negative. She is doing well with NSAIDs. (One size don't fit all.)

Hi Gina, I have neck problems. It has very little movement and a danged osteophyte that is continually jamming into my esophagus (causes dysphonia (loss of voice) - and dysphagia (difficulty in swallowing) but am not letting em touch me. No fear. And no, my neck is not too small for my spinal cord - which does not sound feasible...suggest you ask for a clarification!

Neck stuff is soooo horrible to contend with. Neck and then shoulders. Blasted disease.

Take care.

Think they are talking about cervical stenosis (neck too small for spinal cord). What happens there is that the channel down the middle of the vertebrae where the spinal cord goes through can end up narrowed, and it then squishes the spinal cord some. A whole lot of different reasons for it, including osteoarthritis, but really any bone problem in the neck (including AS) can contribute to it narrowing (stenosing).

Ahhh - well done cemc, yes, of course. Was way off track! Was mentally looking at 'actual' neck getting into a sort of bottle- neck DUH, as opposed to the column itself <LOL> (Not a good day today - grim).

WELCOME, Holly:



Well, sometimes gut issues creep up on us because we cannot really "see" what is going on down there. Sometimes we might have elevated enzymes here and there and fail a blood stool test on occasion, but few warnings until it is too late. The 14,000 people who used to die from taking NSAIDs usually died from "spontaneous" bleeding ulcers (ulcerations or perforations of the lower GI tract).

And our perception about just how much NSAIDs are helping is often just as cloudy; I was taking an NSAID that really seemed to help very much, but the damage was accelerating apace. And this was, in part, due to dietary choices (was a vegetarian too many years).

It is possible to manage a mild condition of AS using NSAIDs, but, over time, the risks become unacceptable: More often than not the AS will increase from mild to severe and NSAIDs will not only be the cause, but it will be much more difficult and take much longer to heal from this damage.

It took me many years of strict diet and key supplementation to heal my tract enough so that I am far less sensitive to starches today, without taking antibiotics.

Since You are young enough, and have very little damage if any can be identified and only recently diagnosed, You can perhaps make the choice to address this disease from its cause instead of chasing symptoms. You will have plenty of opportunity to turn this disease into a minor inconvenience, instead of a career.

HEALTH,
John

Holly, everyone is different, I have tried many of the others, but have ultimately came back to the Indomethacin. I first started taking in in 1989, when they took me off the phenylbutazone which I had taken for 9 yrs. I have found that for me the generic works better than the name brand, and I take it in the slow release form, One a day most of the time, twice daily if in a flare. I seem to have a cast iron gut, never any discomfort or bleeds from anything I have ever taken.
J.R.

I take 500mg x 2 of 95% curcumin about twice a day when needed instead of NSAIDS. It works awesome for me, and others with AS have also reported great results. It's got the natural anti-inflammatory properties without being harsh on the gut. Ending up with a damaged gut is worse in my opinion than AS, at least in my own experiences. I am healing my gut on a grain free, dairy free, refined sugar free, mostly raw foods diet, and loving it! It also has done wonders for my AS. Once I made the full switch to eating a vibrant diet and feeling awesome I could not imagine life any other way!!

If you try curcumin, make sure to order it from here:
http://www.turmeric-curcumin.com/

-Andrea