Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group In search of answers.

Seems like you got lots of good replies below. Just wanted to say HI and welcome.

I do think anyone diagnosed with AS should have an MRI early on as a baseline for future comparison.. Exercise of any sort is good swimming is best as for diet, med's, alternates try putting together your own regiman by blending what works or doesn't work for you.

If you are disciplined enought o make the major chnage of overhauling your diet give it time to have a fair assessment of whether it works for you.

GOod luck and WELCOME again.

ONe last word of advice nomatter how you feel laugh lots. AS and pain can make even the best of use too staunch and serious.

 
stevec-they also serve who stand and wait

Hello Karen and welcome to KA!
I was also diagnosed around your age and at the time I was in extreme pain, both in my joints and bowel. I am now 30 and am feeling great, thanks to this site. The NSD may not work for you, but so far it has for me. I really feel it is worth a try. You should start with the 3 day apple diet first and then the NSD. It is very difficult to stick to, because starch is in so many different types of good food, but the way I feel today makes giving up the food worth it. Read up on the NSD here on KA and other places. Combined with swimming and streaching the NSD might enable you to stay off the medication, which seems to cause more problems in the long run.
Eric

to KICKAS.

You have probably been given some good advice already.

One thing to keep in mind is that AS effects us all differently and thus requires different treatments. What works for one person may not work for another.

As for Enbrel, many people are posting great success on Enbrel, the reason the insurance companies don't like it, is the cost, it is extremely expensive. In Australia it is about $26,000 AU per year. Insurance companies normally want you to try less expensive medications first. Learn as much as you can about the new DMARD's Enbrel/Remicade/Arava etc. Look at the experiences of others on these.

As to NSAID's ie Vioxx,Mobic, Indocid etc, always take with food, these can reek havock on your stomach and GI. I got ulcers from them, so be very careful.

• Should I have an MRI?
Probably, but it is not essential. For yourself I would say Yes, so that you know what damage has been done by AS. Hopefully the Doctor will explain what he see's, some don't, that is why I ended up finding KICKAS. Some Doctors keep you in the dark. This can also be used to monitor the progression of AS.
• Has the RX Sulfasalazine caused anyone trouble?
Ensure that it is the enteric coated, it is one of the better medications for AS. It is classified as a DMARD Disease Modifiying. You will probably get blood tests done initially, to ensure no adverse reactions occur.
https://www.kickas.org/modification.shtml
• Are my back spasms from the Fybromyalgia or the AS?
I have AS and I get the back spasms. I get a very servere version where every muscle in body contracts (I can't even breathe), I normally get them at night in bed. What works for me are the following
Stay in the same position, don't move (if you move it will turn into a spasm that is hard to control), mentally relax your muscles, DONT PANIC, keep calm.
Try to sleep on the part that spasms or hurts the most.
If you turn it into a spasm, try and find a position where you relax the spasm, and stay in that position until they subside
Rub Deep Heat, Tiger Balm into the area
Hot or cold, you will need to experiment, some people say hot and others cold
Stretches before bed
Then there is the Medications Muscle relaxants Ducene, Soma etc
• I have purchased a good multi-vitamin, Zyflamend, Fish Oil pills, and a combo pill contain Glucosamine and Chondroitin. Any comments on these? Anything else I should consider taking?
Many people have posted that it does help. For me it does not help that much, other than keeping you a bit healthier. But definitely worth a try.
You can find more information on these in the Alternatives Forum
https://www.kickas.org/cgi-bin/w3t/postlist.pl?Cat=&Board=Alternatives
• Should I be on a low starch diet? Any other diet plan of use?
3 Day Apple diet, followed by the No Starch Diet. See further down in my response for more details.
• Should I consider physical therapy?
Yes, there is a saying here "Use it or Fuse it", exercise is extremely important in fighting AS. Once you have a exercise program for yourself then PT, is not as necessary.
• I can’t sleep due to the pain. I have tried zanaflex and one other (can’t remember the name). I am still not sleeping very well at all. Is there really such thing as a magic air or foam bed?
You will need quite a firm bed, try to a postapedic, ie chiro authorized style bed.
• Is there any form of exercise that is better than others? How about Pilates?
Any exercise is good, but exercise that involve stretching are better, ie Yoga pilates Tai Chi etc. Another extremely good exercise is Hydrotherapy and is well worth investigating.
Here is a link to a Yoga Discussion thread
https://www.kickas.org/cgi-bin/w3t/showflat.pl?Cat=&Board=Alternatives&Number=32677&page=0&view=collapsed&sb=5&o=365&part=1&vc=1
• Will the pain throttle back at some point?
With AS the pain will normally travel, from joint to joint. AS tries to fuse a joint by making it painful and immobile. For some it attacks the back, some the legs and some the arms. As is different for everyone. And Yes, hopefully it will throttle back, if you find the right combination of medication/diet/exercise. Some people on KICKAS, have pushed AS into complete remission (no pain).
• Are there any books or groups I should know about?
You have found the best support group KICKAS. If you read the rest of my post, there are some good reading material.
Here is a link to a thread discussing books
https://www.kickas.org/cgi-bin/w3t/showthreaded.pl?Cat=&Board=support1&Number=150352&page=&view=&sb=&o=&vc=1#Post150352


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)
https://www.kickas.org/as_dietary_primer.shtml
https://www.kickas.org/asfood.shtml
No Starch Forum
https://www.kickas.org/cgi-bin/w3t/postlist.pl?Cat=&Board=starch

As far as medications, have a look at postings related to Enbrel/Remicade/Avara 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
https://www.kickas.org/cgi-bin/w3t/postlist.pl?Cat=&Board=drugs

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.

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.

The following link's are some light reading on AS.
https://www.kickas.org/cgi-bin/w3t/showthreaded.pl?Cat=&Board=support1&Number=150353&Search=true&Forum=support1&Words=books&Match=Entire Phrase&Searchpage=0&Limit=25&Old=3months&Main=150352
https://www.kickas.org/guide.shtml
This link also descibes the link between IBD (GI) and AS.
http://www.emedicine.com/oph/topic721.htm

Also if you go back to the main page https://www.kickas.org 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
https://www.kickas.org/cgi-bin/w3t/postlist.pl?Cat=&Board=humor

Sorry for all the reading material.
Take Care
Wayne

Edited by wayne on 02/26/04 11:07 PM (server time).

Kat,

Thanks for all the answers! Glad to know that there is such a good group to consult with! Although I like and respect my doc, I just knew there had to be more that I could do than take a pill and rest.

I am going to call the doc in the morning on several of these points. For instance, I am going to make sure I finally get an MRI or the bone scan you mentioned! Also, I am going to see if he has got a good physical therapist to recommend.

Also, I am happy you told me about the calcium/magnesium and MSM. I see a trip to the health food store in my future for tomorrow.

Thank you, thank you, thank you for your response. Your entire reply is so valuable to me. I am optimistic about all the things that can improve my daily life.


Karen

Edited by KarenLynn on 02/26/04 10:10 PM (server time).

Johnny,

Thank you for the tip on the Soma and the encouragement! I am glad to see that my current condition has hope for improvement. Knowing that makes me want to fight it instead of throwing in the ol’ towel.


Karen

M,

good to see you around!

David

Mig,

Thank you for the reply. You hit the nail on the head about the Vioxx. It stopped helping me. I am glad to know that the Sulfasalzine is helping you and I hope for similar results.

Also, thanks for the point on Echinacea! I would have never thought about it but it makes complete since of why it should be avoided.

As far as the mattress goes, I really feel this might help. I think my husband and I are leaning toward the adjustable air bed. Between the mattress and the adjustable foundation, it seemed wonderful. I could actually lie in one place longer than a couple of minutes! I will update you with what we decide.

Thanks again,


Karen

Hi Karen,

I'm in the Dallas area. We have several people throughout Texas.

Betty

M,

Now that makes tons of sense! I mentioned that my worse symptoms started setting in when I was about 25. This so happens to coincide with when I started to back of my work out schedule until it was nil. During the period I was working out, I was eating very little starch and NO sugar. There are lots of reasons that I started to work out less but after the AS started to really take hold it hurt so much to move that I just stopped doing it. And, of course, not being as diligent at a work out schedule left room for slacking on the ol’ diet. Bad idea. Time for some changes!

Thanks again for the info and please stay in touch!


Karen

Fred,

Much, much thanks! I am going to do exactly what you did with the Enbrel. Your right, all they can say is no. Thank you for sharing that!

You’re right about hearing the “Move It or Fuse IT” phrase a lot. I am glad to see everyone saying it so much. It is inspiring me to get on the ball!

Thanks again for the welcome and the info,


Karen