Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group another new comer

Marty and I went for a second opinion at the Clevland Clinic is Dec. 2009. The doctor there suggested that Marty try another TNF drug, he didn't prefer one over another. Our concern is that they are so toxic. I read one woman's post about her liver blood tests were out of wack becouse of her drug. The last thing Marty needs is one more organ or body system having problems. These TNF REALLY scare me.

We have had Marty on the NSD for two days now, well sort of. After we bought the iodine, we found some of the foods we thought were safe were full of starch. Sigh. Starting at square one again tomorrow. Is it possible for him to drink his Coke still? Does the guy have to give up a solutely everything on this diet?

Jeanne

Hi Jeanne and Marty,

Glad you're finding the site so useful and glad to hear Marty is giving the NSD a try. There's no doubt it is a huge adjustment, one that is just not very easy to manage when you first dive in. I know that the folks in the NSD Forum have come up with some amazingly creative recipes for no-starch dishes that really offer some great-tasting alternatives.

I understand your concern about the toxicity of the TNF drugs, and given your fears in that regard, I'm glad you guys are trying the diet first. However, if you do reach the point where you feel it's time to try another one, please know that the highly toxic side effects that you fear the most have proven to be fairly rare so far. Less severe adverse reactions have proven to be more common than we would hope, since such reactions have kept too many KA members from using any of the meds, but so far the most severe reactions that I'm sure you read about when he took Humira have been few and far between, thank goodness. I do realize, however, that just because the instances of high toxicity have been rare, they have happened and when they did, the results were serious. Thus, I do understand your fear. For most of us who do take the drugs now, it ultimately came down to the fact that, without the meds, our quality of life was so horrible that we felt the risks associated with taking the drugs fell into the acceptable category. That, of course, is a decision that every person has to make for him/herself.

Good luck with the diet, here's hoping it works wonders.

Brad

Hi Jeanne and Marty.

Best thing I can recommend to get you off on the right track with the diet is to get Carol Sinclair's book The IBS Low Starch Diet. She has AS and IBS. It's really helpful if you're just getting started and spells out exactly what you can and can't eat. Otherwise you may spend months thinking you're doing the diet when you're still eating a lot of starch...a very common mistake that leads to some people giving up and concluding the diet doesn't work for them.

All the best.....you are most welcome to post diet questions in the "NSD and diet related" sub forum here.

Hi there and welcome to KA.

Have they considered one of hte other biologics for your husband? Just because Humira was a wash out, doesn't mean all the others will be.

OK, I really should have read to the end of the thread before asking that question, as I see you've had input from a dr. at the Cleveland Clinic. Here's the thing, yes there can be bad adverse reactions to the biologic meds, but you have to put the statistics into persepctive. See if you can determine how prevalent a reaction is in 'real world' terms. It's very frightening to read that these meds can cause an increase in cancer, BUT, what you often don't read is quite different. If a certain cancer will occur in, say, .6% of the general population, but in people on biologics that percentage goes up to 1%, well, your chances of being hit by a bus are still greater. Just another way of looking at it. For every truly adverse reaction, such as the woman you mentioned, there are several who have had awesome reactions.

I'm also glad he's going to give the no starch diet a good try. Please give it up to two months of serious work before trying to determine whether or not it's effective. It can take that long for your body to expel the bad stuff and start reacting to the new input.

Hugs,

Hugs,

Thanks for the info and the support. It was getting pretty lonely around here. You all have a sense of humor still. How do you laugh after all you have been through? You have given us hope when there has been no hope for two years.


Jeanne

You have to laugh to stop yourself from going mad

Kevin

Thanks, Kat--you handled the whole matter of "dangerous side effects" much better than I did. That's essentially what I was trying to say, but just couldn't get it to come out right. Good job!

Brad

Like Kevin said--if I didn't have laughter in my life, all I'd do is focus on the disease, and that wouldn't be good at all. Luckily, I've always had a great sense of humor and always sought out humor in every form--reading, movies, comics, cartoons, whatever--and that only increased as my disease progressed. The old saying that laughter is the best medicine is absolutely true.

Brad

Hi jeanne and welcome to KA...both you & your husband...this is a great place and I hope yall get as much out of it as I do and yep, laughter is an important tool with this disease, I rate it's importance right up there with breathing...looking forward to seeing you here in the future...

It's been hard for the past year. Marty is getting fused higher and higher up his spine and his knee is killing him. We have been trying to find ways to be a couple again. The things that I would like to do together cause him pain (power walking at the nature center, bowling, watching the symphany, etc.) Other options are difficult due to his work schedule. He rotates 12 hour shifts, 3 days on day shift, three days off, three days on night shift. So, ballroom dancing classes are out, so are other classes like yoga ect., he can only made 1 -2 classes a month.

The kicker is that I was looking foward to our youngest turning three so that we could date again. We have a large family (8 kids age range 22-3 yrs). Each time I felt comfortable leaving the baby with a sitter, I was pregnant again.

I HATE this AS. It has stolen my best friend from me. My husband has changed. Can't tolerate discussions about the small stuff in life any more. It all seems so trivial to him. He tries soooooo hard to be in a good mood for us, but I never know when the pain will shorten his temper. He gets angery and then goes out into the barn to calm himself down and distract himself from the pain. But then I'm left being a single mom again.

I know he hurts and I appreiciate how hard he tries to be up beat, but I'm still left trying to protect the little ones from an outburst. I feel like I am walking on egg shells.

That's why the hope you have given us it so important. Until we found this site, all we had to look forward to was disablity and more pain. It's been really hard. I loved Chris's poem to his wife. Can't wait to show it to Marty. Chris and Marty's experiences with As seem to be similar, which is funny. Marty had a brother named Chris. They were best friends growing up until Chris' death in 1980.

The positve replies are very helpful. Hope feels so good.


Jeanne