New member with ankylosing

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Aaron E
New Member


Date Joined Jan 2010
Total Posts : 11
   Posted 1/14/2010 6:57 PM (GMT -7)   
I already posted to someone elses thread but to late. lol Anyway I have had A S for over 20 yrs and had no idea. Always thought my pain was from sports injurys and all the bar fights I have been in. I tested positive in Oct 2009. I am not impressed with my rheumy honestly. It could be I have a hard time relating to him I honestly dont know.
I am getting ready to get ready to start yoga lol. Sometimes it takes awhile to push. I am sure you all know what I mean. Mine hasnt been really bad because I have always led a pretty active life. I am a surveyor by trade and am used to walking and being on my feet. I started a desk job almost 2 yrs ago and that is pretty much when I went downhill fast. I am on feldene and tylenol right now. Might as well be on candy honestly. Any advice you all can give me is most welcome. I am nervous about some of the meds because of the side effects but see little choice in trying them.

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 1/17/2010 9:56 PM (GMT -7)   
Hi Aaron and welcome to HealingWellsmilewinkgrin
I too have AS and I also find that I need to keep active to keep it under control. When I had a desk job a few years back my AS was at its worsteyes  Now if I am inactive for part of the day, i push myself to move the rest of the day, its finding the balance for me from not doing much to overdoing it.
If you are unimpressed with your Rheumy is it possible to see another one?
Did you current Rheumy not recommend any maintenance meds for you?
I take Methotrexate for my AS and Pred and Humira for my Crohn's disease (although you can use all these meds for AS as well).
The meds you are taking would feel like taking candy, I think you need more than that.
Please seek out another Rheumy or make the one you have treat you properly.
Please post back and let us know how you are going.
Jo
Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis


Aaron E
New Member


Date Joined Jan 2010
Total Posts : 11
   Posted 1/18/2010 6:05 AM (GMT -7)   
The main reason I go to this rheumy is because it is free. My wife works for one and they do not charge employees. He isnt a bad doctor I just have a hard time talking to him. We are hopefully moving to montana this spring or summer so I dont want to switch till we get out there.
I am starting yoga this week or beginning of next week. I hope this helps. I am also going to try the no-starch diet. The diet is going to be hard because every meal I eat has starch.

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 1/19/2010 2:27 PM (GMT -7)   
Hi Aaron, I don't have AS but every diet I've tried doesn't do a thing! No starch is a tough one, especially if its linked to no dairy like mine was. Hope you survive ok!

On the med front, I agree with Jo, you need stronger meds to feel the difference. Keep a pain diary so that when you next visit the rheumy thay can see how its affecting your life. Tell them about the yoga and diet too so he can see you're determined to help yourself!

Hopefully next visit will make a difference, goodluck, Golitho

Aaron E
New Member


Date Joined Jan 2010
Total Posts : 11
   Posted 1/20/2010 4:06 PM (GMT -7)   
I have thought about keeping a diary for the no starch diet. It will be pretty much the same thing. One thing I was worried about with taking Humira or one like it is that my family has had quite a few people die of cancer. Should I take one of those with that being the case.

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 1/21/2010 2:20 PM (GMT -7)   

Hi Aaron,

I have family members who had died from cancer too (bowel and breast cancer), but I never make my decision on the meds I take based on that fact.

I too was scared to take Humira, in fact I put off taking it for over a year. That was until I was in a Crohn's Disease flare from hell - couldnt even keep water in. I did manage to stay out of hospital by upping the pred and pushing fluids (silly really I just should have went to hospitaleyes ) Then I knew that the pred and MTX were not enough and begged for the Humira.

I was once too scared to take it until I became too scared not to:-)  It has been a good decision, as it works great for my Crohn's and is now starting to kick in for my AS.

This is my own personal account, so what works for one may not work for another.

I just want quality of life, which I feel I am getting from the Humira at present. Whatever comes down the track I will deal with then.

Good luck with your med decisions and keep posting.

Jo


Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis


Aaron E
New Member


Date Joined Jan 2010
Total Posts : 11
   Posted 1/25/2010 9:19 PM (GMT -7)   
Well I am going to talk to my rheumy. I have alot of the crohns symptoms so I think I am going to see if I can try Humira to help with that and the AS. I have been doing yoga which is helping with my knees and hips a good bit but it doesnt help my back at all.

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 1/26/2010 2:59 PM (GMT -7)   

Hi Aaron,

If you are having Crohn's symptoms ask for a referral to a Gastro (or have you already been diagnosed?).

When I was first diagnosed with Crohn's (many moons agoeyes ) I was put on the mildest meds first until I started taking Pred and got stuck on that.

Humira has been a godsend for me and Im off to see my Gastro today to keep fighting to take it.

Jo


Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis


koi collector
Regular Member


Date Joined Oct 2008
Total Posts : 35
   Posted 1/26/2010 3:14 PM (GMT -7)   
Aaron E.
i hope the diet works for you. i tried something like that before for my AS and i failed at it. the only result was loosing 25 pounds that i really needed (i'm already skinny). but i know there is some kind of connection between diet, digestive system and AS. the only 2 days in the last 3 years i have had absolutly no pain was when i had the stomach flu. the flu cleared my entire system. i had no pain until i started eating again. i just can't figure out what to cut out.
let us know how it goes.

Aaron E
New Member


Date Joined Jan 2010
Total Posts : 11
   Posted 1/27/2010 9:40 AM (GMT -7)   
I went to the rheumy today. Feel like pulling my hair out. Well actually I feel more like taking a ballbat to something breakable lol. Lets just say I am not a patient person. Tomorrow morning I am getting a bone scan and he put me on Etodolac 400 mg twice daily which is Lodine. I guess after 20 yrs of goin thru this crap and being misdiagnosed I am an impatient SOB. Everyone tells me to be patient but I know he tried 2 dif meds for 2 months each so that means I have to try this one for 2 months. Are all rheumys this cautious or what?
 
Ankylosing Spondylitis, Crohn's Symptoms

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