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

I am newly diagnosed with AS. Did my first self injection of Enbrel this morning. Has anyone else had success for pain relief and less stiffness using Enbrel? Believe it or not, I just turned 44 last week and it took this many years to get diagnosed. Unfortunatley, I guess I am one of the rare ones that has continued joint pain and stiffness this late in the game. I do excersise and stretch, even before I knew I had AS. It's funny that all the recommended excersises are the ones I have already been doing. I also have some of the more uncommon symptoms such as watering eyes, cold sweats at night (though rare), severe bottom heal pain. I really hope this Enbrel works. The Doctor took me off my regular pain meds since I have started the enbrel. I can't believe how much I am hurtin. Especially in my buttocks and lower back and down my left leg. My siatic acts up when my AS acts up. Is that common?

Welcome to the site....all your symptoms sound very common on here and as far as been a rare one with aches and pains at this srtage of the game.....well...not so rare...I am 50 and I still have the joint pains and aches and sometimes worse then they where 10 years ago. The old myth about AS burning itself out is just a myth.
The pain in the lower back and legs is quite common and I find it most noticeable during weather changes ie: winter to spring.
All I can say is to keep up with the meds and your range of motion excercises...also you may want to check out the starch free diets as they do seem to help a lot of people on here aswell

Dan

>>>>>>
We are kicking some AS*.

Hello there. Welcome to KA!!!

As Dan said, everything you say sounds familiar to many of us here. I do wish you luck with the enbrel. I know that several of the people here have been immensely helped by it.

And you guessed it. Sciatica and AS go hand in hand. Bummer, eh.

Hugs,

Kat

Hey, as far as the buttock and sciatica pain, where the heck do you think I came up with the idea for my online name. Yep, it is very common. Welcome to KickAS, by the way. This is a great support group and you will find many questions can be answered here as well.

Johnny
AKA...

Hi,

Welcome on board, good luck on the enbrel hope it works for you!

David

to KICKAS.

Well, I am 42 and still fighting AS. Let me guess your Rhuemy said that it would have burn't out by now, some of us ain't that lucky.

I am glad to see that you are trying Enbrel, unfortunately Enbrel is not subsidized in Australia and there for is too expensive for me to try. You will be shocked at the real price of this medication. Many people here have posted great success on Enbrel. I hope that it works like magic for you.

They are not so uncommon symptoms, I went through the night sweats for a number of years, and still get them from time to time. Eye problems are also common, UVeitis a form of Iritis is common in AS patients. Have you had the muscle spasms yet. Has any joints become fused yet.

My SI joints are fused, so to answer your question YES.

It is great to hear that you are doing the stretches, this should help prevent fusion.

The rest of this post is my normal new member information, it is 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 poeple 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

Hello Meister,
Same here, I got diagnosed at 41....I am not 52 years young. I didn't start Enbrel until last year. What a difference it has done. I don't even take pain pills anymore. You didn't mention Iritis....I hope you don't get it.......I am pretty sure that Enbrel will work for you. Good Luck

Welcome to KA, I am on Enbrel, was diagnosed with AS in 1997, age 41.
Both hips replaced. Just went on Enbrel last month, and after two injections
the stiffness in the mornings was almost gone, the Psoarsis is all cleared up.
I am not pain free yet, but hoping for more relief. The shots aren't bad.
You have come to the right place to get a lot of good information, and
everyone is very nice.

I wish you mucho luck with the Enberl.

Mike

Hi there. Welcome! You've come to the best place for support, encouragement and information.

While having AS is just not funny, I just had to chuckle over your statement "Believe it or not, I just turned 44 last week and it took this many years to get diagnosed." My friend, I am 48 and was just finally diagnosed yesterday!!!!! It has been a surreal journey to say the least.

In any case, welcome to KickAS.

Sherree

Thanks for the responses. Yes, I have had all the testing done that you desribed below. Including a positive on the gene test. (forgot what it's called). I am fortunate that I am covered 100% for the Enbrel.Had to jump through some hoops though with the Insurance company. The pharmacy tried to wack me for $1000 at first. I'm glad I did not take the word of the first ten persons I spoke to. lol

I have no fusion yet, thanks to my years of faithful strectching I'm sure. I have had the muscle spasms. Last night was awful. I have had Lorcet in the past to take the sting off but not any more. Hope the enbrel starts working soon. I have not had the Iritis but do have watery eyes, especially at night. Always thought it was allergies and could not figure why it was still there when It was not allergy season. Oh yeah, and I have had heart arythmia also. It comes and goes. I think the worst part has been that people, including doctors, were beginning to think I was imagining pain. Or had no pain threshold. Because the Doctors could not find anything wrong. I think one of my doctors actually thought I was just trying to get pain meds. Finally got the right doctor. It finally explains the symptoms I have had for years that could not be explained by the doctors.