Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Looking for support

Hi,

My wife was diagnosed with AS 18 months ago.

She has been on Humira, Embil and remicade.

She had to go off remicade after 2 treatments due to whit blood count. Embril didn't help.

She was on Humira last year for a few months, first every 2 weeks then every week plus 3 methotrexate weekly. She was still in a lot of pain so they switched her to remicade which sh had to stop.

She then changed to Dr Weisman from Cedars Sinai in Los Angeles --- we heard he is the "best" on the west coast.

Now she is back on Humira and methotrexate for last 3 months.

The pain is slightly better than before but is still very debilitating. Standing, sitting, small motor movements cause pain -- sometimes "average" sometimes very high level.

She is not able to type so I am writing this note.

She would like to talk/write to people going thru what she is going thru.

We also are interested in seeing if other medicines or doctors (in the LA area) have been helpful to people.

Thanks,

Marc

just wanted to say hello and glad you found this site.
thank you for being her hands; maybe you could get voice recognition software, its something i plan to get.......its on my long to do list.
sorry to hear that the biologics are not working the magic that they do for some, but it sounds like she is in good hands.
hope you both stay a while, it is a good place to be,
and the things that help (on here) are often the less obvious,
like the joking around and such, things to take the mind off the body.

sue

Hello Annie99 and super helpful hubby, Marc. Welcome to the most remarkable site ever. You're gonna love the folks in here, I guarantee it!

I've done the Enbrel and Humira (also went to weekly Humira shots for a while) but neither of them really seemed to do much for me. I'm hoping to start the Remicade soon and I'm hoping this does the trick because I'm not too keen on going down the MTX route. Up here in Canada we pronounce "route" as "root" and never "rowt"...personally, I suspect this is where the "oot and aboot" nonsense comes from...but I digress...

I also just lost my career due to AS and will soon be on disability. This disease is a harsh one that can rob a person of so much in life. Your wife is very lucky to have someone so caring and understanding with her. For that matter, she and you, are lucky to have found this wonderful site.
There are people in here who have not been diagnosed yet and others who have been dealing with it for many decades now. Everyone seems to have quite different experiences and treatments and yet there is always something that I can relate to in just about every story. Nowhere else could so many people come together who can truly understand what living with this disease is like. I'm so happy to see loved ones come in here as well. This disease takes its toll on those around us just as surely as it does for each of us. I hope you know that you are most welcome here also.

I consider this site to be the best thing that has happened to me since I got sick a couple of years ago. There are whole portions of this site that I haven't even stepped foot in yet (so to speak). It has something for everyone.

I'm so glad you found us. Take care of yourselves.

Hi Guy's, Sorry to hear you are haveing all these problems. Humira has been a god send for me, But I also have Fibromyalgia, The two monsters were setting each other off just nicely. So My Rheumatologist put me on Allegron -Nortriptyline tablets 20 mg. A.S. is a big enough challenge on it's own, but it may be worth while asking your doc to check for any other things that maybe setting the A.S. off. Just a thought. Hope you get some answers & relief soon. Mez.

Hi Annie and Marc,

Welcome to KA to the both of you! Marc, as others have noticed, it's great that you're helping your wife out by being her hands right now. I know it sounds like a simple thing that any spouse would do, but unfortunately, we've seen story after story in these forums telling us that just isn't the case. Too many sad stories of families and spouses who just don't understand how debilitating AS can be at times. Thus, it's always nice to see those stories turned on their heads by wonderfully supportive spouses and family members.

Very sorry to hear the biologics haven't worked well yet, as they are currently the best pharmaceutical line of defense for many AS patients. It does sound like your doctor is pulling out all the weapons that are available right now, so that's good. Well, all the weapons that traditional rheumatology uses. There are a few non-traditional approaches you might want to explore right away, seeing as she is having so much trouble with the biologics. First and foremost is the no-starch diet (NSD) which is the only weapon many KA members use to battle the disease, and with wonderful results. To learn more about the NSD, you can search through this main forum, but the diet actually does have it's own forum here on the site--just click on the "Main Index" link up above and scroll down until you see the No-Starch Diet forum. There are tons of helpful folks there who will give you all the info you could need.

Other potential treatments include antibiotic therapy, which often goes hand-in-hand with the NSD (and which you'll probably be able to find info on in the NSD forum; again, you can supplement that by using the search tool on this main forum as well). There is also another drug regimen that some members have been having success with recently that is called low-dose naltrexone, or LDN. That one I'm afraid I honestly don't know much about--it really is quite new, and it involves the off-label use of naltrexone, which means it can be harder to gind a doctor willing to give it a try. However, nothing is impossible, so you might want to give one more search a try, this one for "LDN" in this forum. We also have a forum dedicated specifically to all Alternative therapies that you might want to check out; again, just click the "Main Index" link and scroll down until you see that specific forum.

Once again, welcome to KA--we're glad you found us, and I hope you find all the help and support you need here.

Brad

Hi Marc & Annie welcome to KA a family of friends.

For me medicines are out, because of severe allergies and NASH (non-alcohol fatty liver disease with inflammation)

I have hot baths, mineral oil in rubber gloves - then put in hot water, use pillows to stop me from rolling - put the head of my bed up to stop GERDS. When your in pain, you find ways to stop the pain - when there is no medication available for your use.

Following the NSD/LSD plus my many other diets help ease the pain, but never really take it away.

Hope Annie gets help she needs to ease her pain.

Hugs

Gerri

Hi Marc and Annie, and welcome to KA

I add my voice to the others in thanking you for being Annie's hands right now. You are a gem of a husband for that.

I am very sorry to hear that the biologics seem not to be helping. Sadly, different people respond differently to the various meds out there. I encourage you to check out the NSD forum. That's the No/Low Starch Diet. It doesn't work for everyone, but it has helped enough people that it's worth taking a serious look at. I'm low/restricted starch in that I don't eat much starch and what I do eat has no wheat or glutens in it as I have a sensitivity to wheat. It exacerbates my AS something fierce. Also, some have found that cow dairy is also an issue.

I also encourage you to try to stretch or do range of motion exercises every day. As much as you can and very gently. Even a little is better than nothing and you may find that it helps you feel better. So many of us do feel better after moving, instead of sitting still which only serves to create stiff muscles and joints. It will be difficult to find the balance between too little and too much for you. Just listen to your body as it never lies about whether or not you're doing too much.

And keep coming here and talking to the KA folk. Between us all I think we've experienced almost everything there is to experience in this disease. Someone is bound to have suggestions on just about any question, and when we don't, there's lots of sympathy and understanding.

Hugs,

Hi Marc and welcome to KA! It's a wonderful place, full of great people, I know this is a rough ride but hang in there and know that we're here for you and Annie ....

Those TNF inhibitors like Humira can take some time to kick in. It took a good two to three months for me to start to feel the effects of my weekly shot 50 Mg of Enbrel, about six months to really start to feel better. However, everyone is different.

I'd say keep her on the Humira (as your Dr. prescribes) and get her on a low Starch diet. That will help.

Regards,

-cwpete..

Thanks everyone for the feedback and kind words. I'm encouraged all ready!
I'll show Anne your notes tonight when I get home.

Marc