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As I mentioned a few weeks ago my doctor had suspected Ankylosing Spondylitis (AS) or similar condition due to a combination of lower back / hip pain coupled with the MC, Crohns and uveitis. These conditions share a genetic anomaly in the HLAB-27 gene and often present as a group in patients.
I had 2 years ago visited with Dr Yost a rheumatologist in NH who is certainly one of the best in the area and certianly the best doctor i have ever met with. With this visit it was a bit like listening to Tex, we were talking about MC and gluten and he mentioned that the celiac test is just one indicator of gluten issues and that it is certainly a chronic problem in society and patients with MC will almost always be sensitive to it and that it should always be avoided. I feel a bit like I've won the lottery with both Dr Yost and my GI doc Dr Nagri as both of them have understood and supported the elimination of gluten as well as soy and dairy if I am sensitive to them. I read the other horror stories from members here who's doctors really dont have a clue and count myself fortunate.
With today's visit which included spinal and pelvic X-rays and a review of my other bloodwork Dr Yost has made an initial diagnosis of AS; to follow that up I will going for an MRI tommorow and have some additional bloodwork done. the current X-rays do show calcifications forming on the tendons where they meet the spine and a accumulation of calcium deposits in the lower joints of the spine. This explains the significant pain levels of the past just about 5 months.
The plan going forward is to start on low dose prednisone (yuck) for a few more weeks and then get together to decide on a long term treatment plan. What seems to make the most sense is to begin tapering off of the Imuran and transition over to Humira. While the Imuran does help control the Chrons, MC and uveitis, it is not effective in contolling the degradation of the spinal joints. Humira apparently does a pretty good job of controlling all of these issues with 1 injection every 2 weeks.
....so the journey continues....
I think it's time for some real burgers (with Udis rolls - thanks Jenny) and a walk and photo session with Nestlé...
Wow, Joe, great news about the doctors! Not so great news about the AS.
I was diagnosed years ago with AS by a chiropractor. I have the calcium deposits on my spine, but I don't have any pain or any other symptoms. I wonder if it is because I am quite flexible and have a pretty good range of motion. But I'm not going to worry about it, at this point. Sufficient unto the day...
By the way, I love your profile pic. You look so cheerful, and it encourages me every time I see it to remember that someone with the disease process you have can be upbeat despite circumstances, and therefore I can, too.
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Sorry to hear about the AS, Joe! With all the issues you have, I'm so glad you have supportive doctors. I don't have horror stories exactly, but my doctors don't really know anything about MC, and are trying to learn right along with me. I appreciate the teachable spirit, but boy, could I ever use an expert once in while, kwim? :)
Hopefully the remainder of your tests come back with good news.
Joe,
I am so sorry to hear about the AS diagnosis. I'm sure you weren't too surprised as you were already pretty much certain that would be your diagnosis. I hope this is it for you, enough is enough. It's good that you found such a wonderful doctor and hopefully the Humira will get things under control so you can get on with your life.
You are always so upbeat and such an inspiration to all of us.
Sorry about the new diagnosis. I too really enjoy your positive attitude despite your having so much to put up with. I hope you find a new treatment plan that works and glad you have great doctors to work with. Scarcer than hens teeth they are.
Thanks everyone, while I'm not thrilled about the Dx, I am glad that I have one. This issue has been going on to some degree for years causing aches, pains and fatigue. Not having the Dx until now has been the frustrating part. I can't get rid of this, so I'm very happy to be able to treat it. Your right Zizzle the Dx is half the battle
I am quite fortunate to have found this doctor and your right Jean they are scarcer than hens teeth..
Marliss, that is a great photo, our resident photo expert Gabes took that during my visit just a little over a year ago. That was a wonderful visit with Gabes and it was a great day of touring the wine region in the Toowoomba to Stranthorpe region, no wonder I was smiling LOL
My goal right now is quite important....simply "choose my attitude". Somewhere I have a photo of Nestlé as a puppy with those words at the top of the photo. Right now my attitude is this is an opportunity to finally deal with this issue and feel better. To date addressing the diet (GF,SF) has been key and I'm sure will continue to help me feel better. Overall I view this as a opportunity, not a challenge.
Joefnh wrote:
With today's visit which included spinal and pelvic X-rays and a review of my other bloodwork Dr Yost has made an initial diagnosis of AS; to follow that up I will going for an MRI tommorow and have some additional bloodwork done. the current X-rays do show calcifications forming on the tendons where they meet the spine and a accumulation of calcium deposits in the lower joints of the spine. This explains the significant pain levels of the past just about 5 months.
Joe, I'm glad you're getting somewhere. I went to a rheum a couple weeks ago who knew about my HLA-B27 gene but didn't order any spine or pelvic xrays. My blood work was all in normal range, thankfully.That was probably b/c my pain had lessened considerably and b/c I've been exercising on Curves machines and lat machines at our Senior Solutions center. But I can feel it when I don't exercise. Do you have an exercise routine? Did he recommend anything like that for you? If you have AS, I suspect the low dose pred pack will make you feel like a new man.
Joe,
How was your burger?? I'm going to call dr Yost's office tomorrow, I'll tell you if they take my insurance or not...I agree with Zizzle, at least you now have a dx and you can move forward from here on out!
Jenny
Hi Jenny, I held off making the burgers tonight. After taking the prednisone and some pain meds when I got home, my stomach was a bit upset and I do want to enjoy this burger thoroughly, so the plan is for tomorrows dinner. Nominally I would take the prednisone in the AM so by evening things should be settled down. I'll let you know how it turns out...thanks again.
I hope your insurance issues works out OK. I did notice in his office today that your insurance plan logo was on the wall as the accepted plans they normally deal with, I doubt you will have any issues. Although I live in NH, my plan is based in Massachusetes as that's where I work, I believe it's standard practice that most of New England is treated as the same region.
Joe, sorry you have AS, but I'll join the chorus - it's good to have a dx so you can move forward on treatment.
I had a few patients with AS. Humera usually helped with the pain a lot. An exercise program is essential, and the best exercise, if you have access, is in a pool. Total joint protection while exercising. If you need and can take more resistance use some equipment like this: http://www.swimoutlet.com/SearchResults ... RQod6QNP3w
That's how I exercise. I am lucky to have a pool right downstairs from my apartment. It's the best exercise you can get.
Hi Lesley, actually I do have access to the pool at the Air Force base I work at. It's a nice big indoor one and they also have a nice hot tub...that actually sounds great right about now!
We did talk about excersise today and we will be looking into physical therapy in a bit, he wants to settle the pain levels and inflammation down some first though.
Thanks for the recommendation about the equipment.
I don't know about heavy swimming when you are still hurting. I think gentle moving in the pool would be better for you right now. IMO PT has it's place (this is a snotty OT talking) but exercise is exercise. I am more interested in what you are not able to do because of pain and/or limitations, and figuring out solutions to the problem. That's why I think OT is way more interesting, helpful and creative than PT. They will disagree, but that's OK. I am old and experienced enough not to care.
The equipment is really helpful when the pain is under control. You can get inot cardio, strengthening, and stamina building using it. I also stretch in the pool or hot tub after exercising. It helps prevent the pain from returning too quickly. I feel WAY better when I do get down to the pool.
Hi Joe,
Sorry to read about your new tribulation. I hope the treatment goes well and that your pain subsides.
I ate a hamburger last night at a place that serves organic, pasture raised, beef and it was to die for. I had a side dish of quinoa with it and today no ill effects. I can't say I'd have been so lucky if it weren't for being back on Entocort
Hope you enjoy your burger as much as I did mine.
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
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