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

Hi jeanne

Welcome to this wonderful site. We are all like brothers and sisters here. It is like a special family.

I'm 62 and have AS since I was 10 and dxed at 37yrs.
My condition is in advanced stage. I suffered as much as all the others for many years. My spine is completely fused. The good part is that I am fused in the straight position.(lucky me...huh)I can not advise you about what you need the most right now but I can say that it is extremely important that you work at a good posture. It will make your life a lot more worth living to have a fused spine in the straight position.
Here is how I managed to stay straight. I lay on my back(use a pillow if you have to)on the floor as often as possible several times a day. I have a hard bed and never sleep on my side always on my back with a pillow under my knees. Or on my front using a pillow where needed.
You will find this hard to do at first but if you are able to do this it will get easier as the yrs go by. Breathing exercises a helpful as well.
This worked very well for me and now I am happy to be alive. The pain is never severe anymore, I’m guessing that is because I must be done fusing. I am stiff but I am straight.
I hope that this is helpful.
Ray

Hi Jeanne, I hope you and your husband vist with us often. As you can see already with responces that this can be your information highway. Does your husband have a good Rheumy? It's important to have a medical support system of GP, Rheumy, and yes, Orthopedic surgeon. The GP is usually the best to handle the pain management, unless he has a specialist. The Rheumy should oversee the AS and Imflmation, and the OS will be important factor especially right now when it sounds like your husband is more than ready for a knee replacement. I'm one who has not been able to take NSAIDS for years now because of stomach problems but there are new stomach meds out now that will allow me to try them again which is important since I can't use the Inhibitors.
Good luck to you both and I hope to hear more from you.
Cindy

Hello Jeanne,

Welcome to Kickas, much can be learned here so ask many questions if you have them. I have not read through entire thread, but if no one mentioned No Starch Diet, that is another option along with the many medications available to treat AS. The medication that helped me immensely is azulfadine.

Pray you can find some answers,

Tim

Hello Jeanne,

Welcome to KA! I see you're from Emmitt, which is just a hop, skip, and a jump eastward on I-69 from where I grew up in Davison. My parents still live there, and I'm still up in that neck of the woods at least once a month (I live down near Detroit now).

I'm very sorry to hear that your husband is having so much trouble with his AS. With the fairly high doses of the pain meds he is on, I certainly wish he was getting more relief than he is. One thing that sets off an alarm bell for me is the large number of vicodin that his doctor is prescribing every month. Don't get me wrong, I'm not opposed to opioid pain medication in any way--just the opposite is true, in fact, as I am a strongly advocate their use for AS patients who have not had any luck with other treatments. The problem with the vicodin, however, is that it also contains acetominphen (aka, Tylenol), and if he is taking all 150 pills every month, he is taking way, way too much acetominophen. (You don't mention if the vicodin is regular strength or extra strength--I can't remember off the top of my head if the ES contains more acetominophen, but I think it does, so it would be even worse.)

Because he is taking the vicodin together with the fentanyl patches, I assume that it is being prescribed as a break-through pain medication for those times when the fentanyl alone does not seem to keep things under control (although at such high numbers, it sounds as if the fentanyl really isn't keeping things under control at all). Also, if you have found a doctor willing to prescribe both of those meds at those doses, I'm going to go ahead and also assume you have a doctor who has a fairly enlightened opinion of the use of such meds in the treatment of AS, to which I say good for you.

If those assumptions are true, then that doctor should be receptive if you were to approach him and ask that a different breakthrough med be prescribed to replace the vicodin. Among the ones that could work in its place are oxycontin IR and possibly even methadone. With the Oxy IR, the IR stands for instant release, which tells you right away how it differs from standard oxycontin, which is a time-released 12-hour drug. Usually prescribed in 5 or 10mg doses, Oxy IR is a fast-acting pain reliever designed to provide 4 to 6 hours of relief for breakthrough pain. Methadone, while it has a negative stigma attached to it due to its use in heroin treatment programs, is actually a very cheap, very effective short-term opioid that is also designed to provide 4 to 6 hour relief. (Because of the negative atmosphere surrounding it, you might have a much harder time getting that prescribed as a breakthrough med, but I at least wanted to throw it out there.)

When dealing with any opioid drugs, unless you have an absolutely excellent working relationship with the prescribing doctor, it is almost always best to never ask for any of them by name. Thus, if you do decide to approach your husband's doctor about getting him off the vicodin, it would probably be very wise to clearly explain that you are seeking the change solely because of the acetominophen concerns and that you welcome any suggestion the doctor has for a med that could be used to replace the vicodin. That approach would alleviate any chance of a doctor thinking that you were asking for a drug by name because you were drug-seeking.

Now, that just addresses the short-term questions regarding your husband's current pain med regimen. The bigger question here is how can he find better pain relief so that he doesn't even need to take all those pain meds? Well, there are a couple ways to approach that too. First off, you mention that he tried humira, but with very poor results. I'm curious--did the doctor who prescribed the humira ever suggest that you should try one of the other anti-TNF biologic drugs after the humira failed? This would include Enbrel, Remicade, and others (sorry, drawing a blank on their names, you can certainly find info on them in the anti-TNF forum here at KA). I ask this because one thing has been very true for many, many people since the time the biologic drugs first came out and were first approved for AS: Just because one of the anti-TNF drugs doesn't work absolutely DOES NOT mean that the other ones would not work either. In fact, based on purely anecdotal evidence here at KA, I would estimate that more people here have been helped by Enbrel and Remicade than Humira--I know that is definitely true for me. I started on Enbrel almost immediately after it came out, and for about 5 years it worked wonders for me, greatly reducing my pain and allowing me to lead a better life. A quick aside: I have an extremely advanced case of AS, with every major joint involved, complete spinal fusion (and a spinal osteotomy to straighten me out at one point), and limited mobility in almost every other joint. Despite all that mechanical damage, however, Enbrel really did provide me with a reduction of inflammation and a great deal of pain relief. Together with oxycontin as my pain med, the two drugs combined to give me as great a quality of life as I could have hoped for at this stage and allowed me to keep working at my editing job for many additional years.

Ultimately, the Enbrel did stop working for me, as my body eventually seemed to develop a tolerance for it--or made it seem that way, anyhow. I then tried humira next, but it only worked for a month and then failed completely--I had a huge flare at the end of that one month. At that point, I was switched to Remicade, which I have been on for at least a year and a half now. All I can say is that Remicade has been an even bigger lifesaver than the Enbrel, as the relief I feel after every IV treatment is simply enormous. As I tell people when I tell them about the first time I took Remicade, it worked so well and so fast that I actually FORGOT to take my oxycontin the night of my first injection. While that kind of immediate response seems to be the exception and not the norm for KA members who are on Remicade, the vast majority here who have taken it, or are taking it, have had very good results with it. It is important to note that there are a few KA members who have had very severe reactions to the anti-TNF drugs, however, and that it is always important to remember that, unfortunately, the drugs do not work for everyone. That said, I think it is extremely important for your doctor to let your husband try the Enbrel and/or the Remicade. In fact, my rheumy seems to echo the growing body of literature that feels Remicade should be the anti-TNF drug of choice when treating AS patients; given your husband's adverse reaction to the Humira shots, perhaps it would be best if he went ahead and tried Remicade first.

In addition to trying the other anti-TNF drugs, you and your husband should also review the subforum here at KA that explains everything you need to know about the No-Starch Diet, or NSD. There you'll read how there is some pretty convincing evidence that AS is tied to intestinal and gastro problems related to the klebsiella bacteria, which feeds on starch. By eliminating starch from one's diet, many, many KA members have experience relief that ranges from moderate pain relief to an almost complete remission of all symptoms. You'll find that many folks here consider the NSD to be the closest thing there is to a cure for AS--that's how dramatic the results have been for many members. On the flip side, there are those who have tried the diet and found that they did not experience significant improvement, so there is the chance it would not work for your husband. Still, unlike medical options, there are no dangerous side effects to worry about with the NSD, nor are there any expensive medications to buy, meaning there really is no reason someone having trouble with AS shouldn't at least try the diet. After all, the best-case scenario is that your husband would experience some of the same incredibly positive results that others here have felt, and wouldn't that be wonderful?

Finally, if you scroll back through the posts here in the main KA forum, you'll find links to many research articles and studies that talk about the exciting new drugs that are in the pipeline to treat AS and all other forms of arthritis. The most exciting ones build upon the success of the biologic drugs and take them even further--there have been some really exciting results from the drug trials, meaning there is real reason to hope that more new treatments will be available very soon.

I hope you find all this info useful, and once again, welcome to KA from another Michigander and, in the grand scheme of things, a veritable "neighbor!"

Brad

bump

This slid down the board so fast today that I wanted to bump it up to increase the odds that the new member, Jeanne, would see the replies she received.

Brad

I'm really glad to know that you and your husband sat down to read our responses together. There truly is a wealth of information to be had. Some of it is better than others, you will have to try things out and see what works best for you both.

I believe it is important to educate ourselves and then consult with our doctors - having an understanding of how to communicate with doctors will help you so much when it comes to getting the level of care you know you need.

Welcome once again,

Chris

Hi Jeanne, I can't say better than has been said here, just welcome and don't give up. I let two years of my life sort of go because I couldn't get on top of dealing with it emotionally. I'm past that because of this site.
cheers,
CC

WOW Jeanne,

My heart goes out to you and to him...bless your heart!

That is alot of pain meds..I was up to 100mcgs of fentanyl every 3 days and Oxycontin and Tramadol before I started on Remicade. Remicade has given my life back.

For his Dr. to say this is rare..mmm not sure about that just look at all of us..lol

If he/she acts like they dont want to help him then absolutely dump them and find someone who will, there are too many good Drs. out there that are willing to help.

In my search I found that a Rhumy did nothing for me (not slamming ALL rhumys) I now see an Immunologist and he has been my life saver. He didn't make me feel like I was not worth helping or faking it like so many of our other members here have been treated.

I would say finding the right Dr. should be the first step, just my opinion.

Keep us updated.

Hugs,

Lisa

You know, CC, that's what happened to me. I was feeling quite defeated until I found KickAS. And then people who have survived really severe versions of AS or RA and maintained their sense of humour and their kindness made me feel differently about it.

Hi. I'm Jeanne husband. Thank's for all the helpful reply's to Jeanne post. They are very much appreciated. We are now trying the no starch diet. I very much hope it works. Nothing else has.
Just tired of all the tests, doctors, pills and mind numbing never ending PAIN! All hope was quickly fading away until we found Kickas.org. What a God send!
Anyone suffering with A.S. (Especially our loved ones who suffer right along with us) Need Kickas.
I am doubly fortunate to also have a wonderful wife who is understanding and patient to help me through this.
Thank you again.
Marty