banners
Kickas Main Page | Rights and Responsibilities | Donate to Kickas
Forum Statistics
Forums30
Topics43,792
Posts518,795
Members13,838
Most Online1,568
Jun 29th, 2016
Newest Members
Dori, Mel_Sigman, wle2, Ur4n1cD34Th6488, Bega
13,838 Registered Users
KickAs Team
Administrator/owner:
John (Dragonslayer)
Administrator:
Melinda (mig)
WebAdmin:
Timo (Timo)
Administrator:
Brad (wolverinefan)

Moderators:
· Tim (Dotyisle)
· Chelsea (Kiwi)
· Megan (Megan)
· Wendy (WendyR)
· John (Cheerful)
· Chris (fyrfytr187)

QR Code
If you want to use this QR code (Quick Response code) just save the image and paste it where you want. You can even print it and use it that way. Coffee cups, T-Shirts etc would all be good for the QR code.

KickAS QR Code
Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
Joined: Mar 2017
Posts: 4
E
esurfer Offline OP
New_Member
OP Offline
New_Member
E
Joined: Mar 2017
Posts: 4
Hi All, I'm newly diagnosed with AS at 49 years old.

I can't say for sure when it all started but I know about 15 years ago I had a bad "season" of sciatic pain in my left leg. Having been active in Tae-kwon-do briefly, I conclulded that overwork caused it. But about 6 years ago, I started doing P90X and I realized I was much stiffer than I'd ever been in my life. I thought that was just old age creeping in. I would see the doctor on and off for back pain and stiff necks but nothing conclusive. The pain to me was more muscle related than spine pain.

Then, we moved to the MidWest and my activity level dropped to zero and I gained 60 lbs. I've been fighting ever since to get back to a healthy weight and activity level. Around the same time I had an episode where my back pain was so severe, I was immobilized for a day, flat on my back and for a whole week I could barely move. The slightest twitsting would send muscle spasms and pain shooting in my middle back. I went and saw some orthopedic doctors who din't find anything and had me do physical therapy. That only seemed to make it worse so I stopped going. The pain went away.

Eventually, though, the pain in my back returned, so I went and saw a chiropractor this time. Well, after about five sessions of adjustments, since I wasn't getting better, he had me get some x-rays. The radiologist wondered if I was HLAB27 positive as he indicated I might have an axial spondyloarthropathy. By this time, my flare up had subsided so the urgency of finding out what was wrong was put on the back shelf. I've just been managing my flareups with ibuprofen, but I noticed a new pain in the groin area of my left leg which now has migrated to the outer hip and ibuprofen doesn't help. I also developed a frozen shoulder (adhesive capsulitis) in my right shoulder (not sure if that is related to AS).

This Feb. I finally got in to see an arthritic specialist who took more xrays and blood tests and confirmed that I have AS and am HBLA27 positive.

So that's where I'm at now. My rheumatologist has me on Meloxicam which helps take the edge off my stiffness and back pain but only for about 10 hours. He recommended I try Humira, which I have been approved for. But I'm wondering if I should just manage the pain with the Meloxicam?

I've been living with this unknowingly for at least 5 years perhaps longer. It is manageable, but will it get worse?

Will the drugs prevent it from progressing or are they only for pain mangement?

Lots of questions but glad I found a community/resource like KickAS.org. Sorry for the long read.


eSurfer

Joined: Nov 2016
Posts: 26
K
Member
Offline
Member
K
Joined: Nov 2016
Posts: 26
I have a similar story and was also a martial artist and yogi teacher. It gets a whole lot worse and I have lost some neck and hip range of motion and the nsaids have helped but causing anemia and gut issues. I went 12 years without proper diagnosis because fitness amd flexibility level was really good when not flared. It took a full flare up and loss of neck, hip and back mobility till my family doc finally started looking at AS about years ago. I didnt have the hla-b27 gene so my family doc didnt diagnose me with AS. I continued to take the nsaid vimovo which helped but I was still getting worse. I started to get worse and notice significant loss in some range of motion and my red blood counts got really low. I insisted on new xrays and asked them to be compared to the last ones 2years ago and they now showed permenant damage. I then insisted on getting into a rheumie but here that takes over a year. I finally got to the rumie a few months ago and I am planning to go on Humira this month.

The nsaids help but will inevitably harm your digestive tract and they only help not take it away. I have heard some great results with Humira that are life changing, but there are also some that it does nothing for and some it cause big problems. You just have to decide if the risk is worth the gain and for me if it can stop me loosing mobility and reduce pain I am all for it.

I try the no starch diet and it seems to help but is hard to maintain where there is not alot of locally grown produce and winters are long. I find I can react to alot of other things to like red meat, mushrooms, peas, beans, dairy, and of course starches and grains and almost any packaged or canned food. It gets a bit hard to maintain but I am going to keep trying the diet till I can maintain it for a long period. For me Humira is worth the risk especially if I can get back to playing around with my son, the way we used to. It gets frustrating always being in pain and loosing mobily and flexibility especially when I was a high level athelete and yoga teacher, which now feels like a million miles away from where I currently feel.

F
Frederick
Unregistered
Frederick
Unregistered
F
Sadly your story is not unusual of A.S. Medications such as Humira have been very successful for some A.S. sufferers and I myself am on an Anti-TNF called Enbrel. It worked very well for my although I must admit I do find that my condition has deteriorated of late. You must try the Humira as I think you may well benefit from being on it. As I am not a believer in diet as a way of treating A.S. I had better not offer any advise on that. All the best with it all and let us know how you get on.

Joined: Sep 2001
Posts: 6,151
Likes: 3
AS Czar
Offline
AS Czar
Joined: Sep 2001
Posts: 6,151
Likes: 3
WELCOME, eSurfer:

My AS began with sciatica, and I have also had adhesive capsulitis due to improperly treated AS. Hip bursitis was so bad I was unable to walk, so began the worst decisions of my life in trusting doctors but that was so many years ago there were not many options.

Biologics are *sometimes* very good and will not accelerate AS like many NSAIDs can, and these have the added potential of avoiding the permanent skeletal damage.

Diet will prevent AS from advancing better than any drugs, but again, the combination with biologic drugs has more hope. NSAIDs are really only for some pain control and in my experience, they greatly accelerated my disease. I do not even go near them today and have been in remission for 17 years and intend to stay this way!

Untreated, AS can get worse.

If not ready to try the diets, I suggest keeping a symptom vs food diary (I can almost identify what You ate just prior to being incapacitated; some of our favorite fun foods!).

Again, we appreciate having You aboard,

HEALTH,
John

F
Frederick
Unregistered
Frederick
Unregistered
F
Originally Posted By DragonSlayer


My AS began with sciatica,

Diet will prevent AS from advancing better than any drugs,

NSAIDs are really only for some pain control and in my experience, they greatly accelerated my disease. I do not even go near them today and have been in remission for 17 years and intend to stay this way!

Untreated, AS can get worse.



In my case it was A.S. first then followed by Sciatica (neuropathy, nerve damage whatever). The neuropathy is due to being treated with radiotherapy. Radiotherapy was once seen as a new miracle cure for A.S. As with most miracle cures i did more damage than good and is I believe no longer used for A.S.

Personally I do not believe in diet as a treatment for A.S. but if it works for you then go for it at least it is unlikely to do you any harm and that is more than you can say about many medical treatments.

I am however a firm believer in NSIDs. and not just as a pain controler. A.S. is such a very erratic disease that differs from patient to patient. What works for one may not work for the next. Several different NSAIDs. may have to be tried before the right one is found for each patient. Long term remission is not unusual for A.S. patients and only goes to show just how the disease differs from patient to patient.

Untreated A.S. can indeed become very much worse but even then there are some who only get A.S. in a very mild form and they may get away without the need for any treatment.

Joined: Nov 2016
Posts: 26
K
Member
Offline
Member
K
Joined: Nov 2016
Posts: 26
It is interesting to see all the varied results. I definatley notice diet helps especially when I juice fast. But I cant maintain the fast for more than 4-5 days and get so hungry I eat things I should not. Also With my work I need to take clients out and eating at restaurants and this like walking through a mine field. I rarely come out of eating at restaurants without a flare up later.

Dragon slayer do you have a example of the meals you eat? I am doing my best with nsd but I don't think I am getting all the nutrition I need.

Joined: Sep 2001
Posts: 6,151
Likes: 3
AS Czar
Offline
AS Czar
Joined: Sep 2001
Posts: 6,151
Likes: 3
Hey, Kahuna:

I used to alternate breakfasts between omelets (when I missed pizza so much, I would do onions, bell peppers, olives, tomatoes, and mozzarella), chicken or turkey hot dogs, melons and other safe fruits on light days expecting larger lunch.

SNACKS--almonds and raisins or walnuts and dried cranberries some dark morsels can be added for ultimate filling and sweet tooth.

LUNCH--Salads of all kinds, especially tuna salad on top of salad. Sometimes I would make vegetable plate and include celery with almond butter. In a pinch, burger patties.

DINNER--Salmon was my favorite and it fights inflammation naturally, baked tofu with A1 sauce, steamed broccoli with riced myzithra (parmesan will work), beef of all kinds, chicken every way but fried, soups I could make and fond of tortilla soup so substitute non-starchy things.

TODAY, my diet is much more convenient and I travel a lot, so do not maintain such a rigid diet--Andrea Wyckoff's "Forest and Fauna" site is a big help for people missing breads and Carol Sinclair's "The IBS Low-Starch Diet" is the primary source and also contains a foreword by Professor Alan Ebringer explaining the mechanism behind AS.

At the time I was treating myself with very strict NSD plus antibiotics, I did not know that it would result in such total elimination of AS symptoms nor that it could continue working long after stopping! I explain this in retrospect: I am certain that I had Klebsiella SIBO (Small Intestine Bacterial Overgrowth), and this was an especially important contributor to my advanced AS. Some recommendations for people interested can be found at my dropbox links "Important AS Resources" in my signature.

HEALTH,
John

Joined: Nov 2016
Posts: 26
K
Member
Offline
Member
K
Joined: Nov 2016
Posts: 26
Hey Dragon Slayer,

Thanks it helps to see what kind of meal you made and I think I was not eating enough proteins. I will check out those books you mentioned. I am intrigued about the antibiotic treatment, I am not familiar with that, I will check out your drop box. What kind of antibiotic did you take and for how long? Did just one cylcle while doing NSD clear up your symptoms amd inflamation?

F
Frederick
Unregistered
Frederick
Unregistered
F
Your story is rather typical of an A.S. sufferer. Your condition is erratic with the pain coming and going in different parts of the body in a random way. The Meloxicam is one of a group of drugs known as NSAIDs. There are many different once and it may take several attempts before the one that suits you best is found. I think the suggestion you try Humira is a good one. Humira is a Anti-TNF drug and has been a very effective treatment for some sufferers. Again there are other such drugs and the first one you try may not be the best one for you. So learn all you can about your condition as the more you know the easier it is to live with. Check out this site from time to time and let us know how you get on.

Joined: Sep 2001
Posts: 6,151
Likes: 3
AS Czar
Offline
AS Czar
Joined: Sep 2001
Posts: 6,151
Likes: 3
Hello, Kahuna:

The best bactericidal agent was Cipro--therapeutic.
The best bacteriostatic was tetracycline--maintenance.
I used Flagyl several times in combination and separately.

During the course of about eight years, I did at least 15 cycles of the Cipro. After about three cycles I was able to make the NSD alone (no ABX or any other drug) keep all AS symptoms near zero for many months (I only broke this for travel purposes).

Approaching "one cycle:" Yes, after FOUR DAYS combining Maxaquin with strict starch exclusion, I knew this was the best way to control my AS and most of the inflammation was taken care of. However, it took six months to finally end my chronic severe ribcage pains completely.

In one of his stateside lectures, Professor Ebringer said that the IgA (our agent provocateur) has a half-life of just over 90 hours. This explains why it takes four days to evaluate almost anything for AS. And we get a flare within hours that takes so long to eliminate, it is no mystery that most people have trouble making the food connection with AS. A short (<10 days) fast is the most convincing of all.

HEALTH,
John

Page 1 of 2 1 2

Link Copied to Clipboard
Who's Online Now
0 members (), 41 guests, and 63 robots.
Key: Admin, Global Mod, Mod
Recent Posts
Uveitis
by Missalicia - 05/25/22 05:38 AM
Uveitis again and I miss you guys!
by Magician - 01/20/22 05:14 AM
Popular Topics(Views)
3,180,076 hmmm
1,239,459 OMG!!!!
644,424 PARTY TIME!
Powered by UBB.threads™ PHP Forum Software 7.7.5
(Release build 20201027)
Responsive Width:

PHP: 5.5.38 Page Time: 0.034s Queries: 35 (0.011s) Memory: 3.2736 MB (Peak: 3.4750 MB) Data Comp: Zlib Server Time: 2022-06-27 09:19:30 UTC
Valid HTML 5 and Valid CSS