Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Newbie

Hi there. I have been crusing around this site for a few weeks and thought it was time to introduce myself. My short bio is as follows:

33 yrs old. Diagnosed with AS for approximately 8 yrs. Currently on Indomethacin & Methotrexate. Vioxx & Celebrex do not work. I had a flare up in July 2002 (draining kness, etc...) and after 10 mths the Metho started to help but I am still not remotely in remission. I have tried prednisone but the dose either does not work or it is strong enough to work but I feel sick 24 hrs/day. My doctor is talking about Enbrel or Remicaid but my insurance doesn't cover enough of it. I will probably wait until my wife gets coverage too.

Up until April 2002 I was still active and playing hockey (welcome to Canada). I started to complain about a pain in my neck and my doctors diagnosed me with C1/C2 joint instability. According to them this is usually and end stage symptom of AS. I have it now but the rest of my spine is still relatively flexible.

My movements are limited by pain but I can't figure out how much of it is due to loss of muscle mass over the last two years. My waist has been getting larger but my weight has stayed the same, not a good sign for my muscles.

I have been lazy about stretching and exercise. When you feel good you don't think you need it. When you feel bad you just can't do it.

I am starting off with the stretches from this site and will probably try the low starch diet.

Does anyone have any words of wisdom as to other things to try? I want to try to beat the remaining pain and work myself into remission. It has been 8 years on Indocid with brief attempts at different NSAID's. I would like to get off them all for a while.

Thanks for listening...

Hi Trevor,

Glad to see you posting - a fellow Canadian and a western Canadian at that. Sounds as if you've had a rough time of it these past few years. Sorry to hear that the meds aren't doing much to touch the pain, stiffness etc. Hopefully, you'll be able to get on some new meds - when will your wife get coverage ?

I hope that the LSD works for you. If you read in the Alternate treatments section here at KA, you might find something that also might bring relief.

So ... keep in touch. Hope to hear from you again,
Cat

Hi,

Welcome to KickAS, I think you have a good plan.

The No/Low Starch Diet is a good thing to try, for some if not many it helps. Even if it means less medication that's a long term benifit.

Go easy on the exercises, stretching swimming, I know what upper neck issues are like and how easy it can be to disproprotionately upset them.

Have you tried swimming? I started using a mask and snorkel seems to help the neck.

As for other (muscle) pain, a neck problem can radiate pain all over, we get scaring this can trap soft tissue nerves blood vessels etc. difficult to find and more difficult to live with.

There's a common secondary conditon that some call Fibromyligia, or (I'm told more correctly) chronic pain syndrome. No one really understands this (except my son's pain clinic apparently) it's due to some sort of malfunction in the nervous system brought on by injury disease etc) where nerve signals are incorrectly processed as pain........

I wish you well, and I hope you hang around and fill us in on how you are going.

David

Hi Trevor,

Welcome to Kickas, hopefully this site can give you some answers for your goals. I make sure to do stretches morning and night... once in a while I will miss. This is important for range of motion.

I have been on the No Starch Diet (NSD) for 2 1/2 yrs now. This is how I control my inflamation these days, I had issues with side effects from meds. Only advice I can really give you if you want to kick meds. But it is not easy, takes a lot of discipline.

Best wishes,

Tim

Hope is only a post away with KickAS.

to KICKAS.


Firstly Welcome to KickAS.
Sounds like you are on similar meds to me, Indocid/Methotrexate/Salzopyrn.
And Predinsone does the same thing to me, I get the jitters, can't sleep, and feel really ill. I hate the stuff.
I also have been through all of the NSAIDs.

Try finding an exercise that you enjoy to do, maybe something that your wife enjoys too, ie Tai Chi, Yoga, Pilates, Golf, Tennis etc. The best is swimming or hydrotherapy.

The rest of my post is my normal welcome information and is well worth a read.

You will find this site and the people on it very supportive, knowlegeable and experienced. One of the great aspects of the site is that people share experiences.

Have you been through the normal battering of tests, XRays, MRI, Catscan. Have you had a blood test done, HLA-B27 positive or negative, Rhuemtoid Factor, ESR and CRP readings.

Look around the site, there is a lot of useful information, the following are things you should look closely at.

The NSD No Starch Diet is well worth trying, many people here have had great success with the diet, some have managed to come off all medications on the diet. If the diet works for you, then that is got to be better than taking medications. Remember though that the diet does not work for all of us. If you are serious about trying the NSD, try starting with the 3 day Apple diet first, I think it is a system cleanesing/detox diet. As to the NSD, there are differing levels of the diet from strict NSD to LSD to Gluten Free. My suggestion is to try the strict NSD first and migrate down to the lower levels experimenting with various foods and there effects.
Here are some links. (just click on them)
AS Dietary Primer
AS Foods
No Starch Forum
No Starch

As far as medications, have a look at postings related to Enbrel/Remicade/Avara/Humira these are relatively new medications to treat AS, the downside is that these drugs are extremely expensive and you will need to check if you are covered. Many people have posted great success on these medications.
Check out the AS Pharmacy Forum
Medications

Myself, I think the answer lies in finding the right combination of Diet/Medication/Exercise that suits you, everyone is different.
There is a saying here "Use it or Fuse it", exercise is really important. Some suggestions are Yoga, Pilates, Tai Chi.
Hydrotherapy is also well worth trying.

One other thing, learn as much as you can, you may find your Doctors knowing very little about AS, and I suggest that you become proactive in your appointments, ie suggesting and discussing things that you find on this site with your Doctors.

Look around the site, there is a lot of useful information here.
If you have any questions, post them up and you will be surprised at the amount of responses.

Another thing to watch out for is Uveitis (a form of Iritis), which is common with AS.
UVEitis
If you get this see an eye specialist immediately, as permenant eye damage can occur if not treated.

The following link's are some light reading on AS.
AS Information 1
AS Information 2
This link also descibes the link between IBD (GI) and AS.
AS Information 3
AS Information 4

Also if you go back to the main page KICKAS Main Page you will find the following sections with great reading information.
Medical Center
Diet Center
These sections are well worth reading.

Also if you need a good laugh there is the Jokes Forum
Humor

Sorry for all the reading material.
Take Care
Wayne

I was surprised at the quick responses. I will try to answer all the questions in this post.

Cat:
My wife is on mat leave for another 9 months. When she goes back to work we will pursue Remicaid or Enbrel. When I have time I will sift through the Alternate Treatment section.

David:
I can't believe I didn't think of adding a snorkel. We were just on vacation and a 50' swim left me with a sore neck. I'm not a big swimmer but will keep it in mind the next time I hit a pool.
As for pain it is currently all in my back, chest & neck. No deep breaths and not much mobility. Hopefully stretching & exercise will help out.

Tim:
I'm hoping to reduce or change to less destructive meds. I don't ever expect to be on no meds although my Dad hasn't taken any for years and he has AS too.

Wayne:
I have never heard of Salazopyrin. As google shows me it is an anti-inflammatory the questions are: Is it an NSAID? How hard is it on your system? And is it recommended for AS? The info I read only mentions RA.

I have been through most of the tests but I don't think all of them. After a while you forget all the different blood tests.

Also, thanks for the reading material. Something for when it gets slow at work next week.

Trevor

Hi Trevor

Welcome to the site. If your Doctors are saying that you have C1/C2 joint instability be very careful because that is what my neck did as well only my neck Broke and now I have Rods and Wire holding things together. It was NOT a fun surgery.

I also see you are from Alberta and if you are near Calgary please stay away from a Doctor by the name of Dr. Bouchard. He is the guy that did my neck surgery and messed it up BAD. So Bad that he did the surgery twice and it still did NOT work.

John

John,

That sounds like my neck. The ligament that controls/limits the range of motion between C1 & C2 is either gone or stretched out enough to be useless. I get the range of motion examined every year and so far it has not gotten any worse.

I see a Dr. Hu at Foothills. If & when it comes to the operation I will make sure I avoid Bouchard.

Trevor

Hi Trevor and welcome to KA!!

Another Canuck here, but from Toronto. Yes, the horrible 'T' word.

Have you been in touch with the Arthritis Society? They have physios, occupational theraptists and good exercise suggestions. When i was first dx'd three years ago, they sent an Occupational Therapist over to visit me both at work and at home so that we could make sure I was spending my time in AS friendly places. This cost should be covered by your provincial plan, by the way. At least, it is here.

Also, they have the Arthritis Self-Management Program which is very good and offered worldwide. Lots of techniques for coping with pain. You'll probably be the only ASer there, but you'll still find you have tons in common with the other participants.

Glad you found us.

Hugs,

Kat


"I haven't failed. I've just found 10,000 ways that don't work."- Thomas Edison

Salzopyrn or Sulfaalazine is a DMARD and is very effective for treating AS, it is one of the less harsh medications and many people here are on it. You might want to talk to your doctor about it. Not everyone can take it, some people are illergic.
(DMARD Disease Modifying - Methotrexate is a DMARD as well).

The most effective medications are Enbrel and Remicade, many people have posted great success on these, but they are extremely expensive.

Take Care
Wayne