Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group "Flare ups" for lack of a better term

Hello everyone,

I'm new to this site and glad I found it. I'm a 33 year old male living in Canada and have AS. I found out what it was at the age of 17. Once we figured out the problem I was put on Surgam "Tiaprofenic acid" for a few years untill it started bothering my stomach to the point the pain was unbearable. Then celebrex came along and i've been taking it ever since. In general it's let me live quite a normal life while taking it. I have found that the past few months im in constant pain and stiffness and the celebrex just doesn't work during these times of "flare ups". Since this is my first post and im new here i'll keep it short. I just wanted some feedback on what people are doing to help flare ups and what works for them. In the near future I will post the troubles i've had with AS and how its changed my life to some degree.

Thanks
ELoney

Hi ELoney,

Welcome to the forum. Sorry you have AS, though. You will see many different approaches to flare ups here.

In no particular order...

Some folks who do the no-starch diet (NSD) swear by fasting as a cure for flares. While I am trying the diet, I do not have the gumption (or the blood sugar) to do a fast.

Others use prednisone tapers to cut off the inflammation. This is where you start with a high dose of prednisone (say, 40-60 mg) for a couple days, then taper down by 5 or 10 mg every (or every other) day until you aren't taking any. They are also called pred bursts.

My approach lately (while I wait for the medicines I am on to start doing their thing) is to wait and post on this board. Also, pain medication is helpful, as are ice and heating pads. You will doubtless get a lot of good advice here.

Good luck!
~Moll B

Hi ELony, I use a product called DMSO as well as boswellin. I started the nsd (no starch diet)about two months ago and the flares seem to have reduced in severity. Aleve works okay for me now that my flares aren't as bad.

Toni

Hi!
I was diagnosed this spring and have had AS for about 22 years. My daughter is going to Sick Kids in November because she is showing signs of AS. I am 42 and my daughter is 15. For flares I have taken many different pain killers, anti inflammatory and muscle relaxant pills. I also go to the Canandian Back Institute when it is just back or neck flares. The physio there usually helps. I tried the NSD diet but only noticed a little difference.
Last Tuesday I started Remicade but it is to early to give any real answers to that other than I am feeling better than I have in 3 years.
This is a great sight - sorry that you need it.

Beth

Welcome aboard Eloney,

Well.. hopefully all it is is a flare and you can return to normal. Sometimes the disease progresses. I tended to have flares with stress (outside of progression) if everything else was in check.

There is a lot to learn here, so you should read and learn about AS all you can and the treatments. There are many options and knowledge can lead to power to tackling this monster.

Wishing you the best,

Tim

Hi Eloney
I take hot baths. Wrap myself in pillows so I don't move, and cause more pain. Allergic to most pain meds and have liver disease (NASH), my doctor won't give me any medication.

Hugs

Gerri

Hi!
I just wanted to say welcome aboard.
I love hot baths and heating pads. I also like my shower because we have one of those shower heads that you can make it massage or whatever and that feels really good on my back. I'll stand in the shower for forever just letting it massage my back.

Good Luck, hopefully something in what I said will help!

Thanks for the replies everyone this is great. Having AS for 16 almost 17 years now and im only 33 you can imagine the things ive tried to help these flare ups. One thing that unfortunatly doesn't work for me is heat. Heat does help with the spine stiffness but usualy my flare ups involve what feels like my ribs and muscles along side my spine and heat does nothing to relieve this Being on this site now for only 2 days ive already heard about the NSD, maybe ill give this a try but I do find it somewhat difficult to determine what doesn't have starch in it..most things do? It seems the diet would be hard to keep in this day and age. Another thing someone told me was using "cold" packs on the area? ive never heard of this before. Anyhow thanks for the ideas so far, these are things I will consider:)

Hi Ernie and welcome to KA!

Unless my pain is very very mild then heat doesn't work for me either. It seems for some of us anyway, that heat is best for relieving stiffness, using moist heat just before you begin any gentle stretching exercise is one practice they taught me years ago when I was hospitalized.

Cold packs do work far more effectively (for me) when I'm in acute flare, where rib cage and back muscles are rebelling and cause stabbing muscles spasms... a cold pack (covered in light tea towel) can actually help to numb these into submission. 10 mins on and 10 off is best as you need to be careful not to freeze your skin in the process. Alternating between heat and cold works for some people too.

If you're interested, you can read more about the NSD and ways to detect starch, here on the NSD forum. You couldn't hope to find a friendlier more supportive bunch, happy to help with any questions.

Nice to have you join in and hope you'll benefit from KA as much as I do!
mig

Hi

I tend to use heat, or a TENS, sometimes ice. I barely touch medication.
I was on celebrex at one point, and it done nothing for me. (others did help)
The rib/chest area is hard to treat I find.
I do try a cooling nsaid gel, which sometimes helps, and i make sure I keep mobile as much as possible, with stretches and strengthening exercises.
I have tried the low starch diet, with minimal changes. I now follow a diet to suit me, and fare better than I did after diagnosis. I have fewer flares, and they dont last as long as they used too.

AmberUK