Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Mayo Clinic

I will be thinking of you. If they do like they did when I was there, they asked if there was anything else I wanted. Or you can ask to see a rheumatologist if they don't volunteer.

My insurance paid every dime of it. I hope yours does also.

Blessings.

Possi, I had terrible insurance until my wife got a job teaching this year. It is a tremendous help, but they're still not going to pay every dime. After my deductible, it's the standards 80/20 split. But I'm thankful I have reasonable insurance now.

I am thankful you do too. We would be in a heck of a mess without insurance wouldn't we?

Well, I'm on the other side of the experience now. It was kind of like that experience when you finally decide to go to the doctor when your sick only to feel much better when you are finally there! My blood work was as good as it has been in years. My symptoms were generally mild by the time I got up there, but they did confirm the original diagnoses concerning steatohepatitis, eosinophilic esophagitis and colitis, with A.S. But nothing was as bad as it could have been.

My steatohepatitis is unrelated to autoimmune issues, which means I can control this through keeping my cholesterol, triglycerides,diet and exercise under control. This was already looking much better, courtesy of an over the counter supplement called resveratrol, which had cut my triglycerides by 2/3.

On the new biopsies the eosinophils in my esophagus and colon were gone, likely a combination of successful treatment of Qvar and Humira. The CT scan did show some minor abnormalities. But all in all, treatment is working well.

The joint issues and enthesitis continue to be a problem, even on Humira, but I think I'm even feeling better in that regard. The rheumatologist I saw didn't really have much new to offer except that he vacillated between A.S. and USpA and then ultimately said it didn't matter and wouldn't change treatment.

The main GI (who was my main doctor there) ultimately consulted with some other IBD experts and actually called me back today. He has diagnosed me with Crohn's, though a mild case at this point.

The overall experience made you feel taken care of and completely checked out. I also saw an allergist while I was there, but he tested me for nothing. The scheduling didn't go off as easily as I had been led to believe and I had to wait days in between consultations and procedures, but when all was said and done, it took a few hours more than a week.

It was mostly really good news. I'm not thrilled about Crohn's, but we are certainly on top of it and ahead of it. There's been a lot answered prayers in regards to this visit and I'm thankful I had the experience. As always, I'm thankful for the good folks and support here.

David-
I am thankful for the answered prayers.

My oldest daughter has Crohn's - she mostly watches her diet, but about once a year has to get out the big guns for treatment.

Good to hear from you. I am sorry about the Crohn's. Hopefully you can manage it like you said.

I had wondered how your appt. went. I hate it about the scheduling. I imagine with that many patients it would be difficult to keep it going on time.

Check in along and let us know how you are doing.

I'm very glad you're pbc free.

Your writing is in black, mine is in red:

My steatohepatitis is unrelated to autoimmune issues, which means I can control this through keeping my cholesterol, triglycerides,diet and exercise under control. This was already looking much better, courtesy of an over the counter supplement called resveratrol, which had cut my triglycerides by ⅔.

David, diabetes runs on both sides of my family. And on the one side, the diabetes and the sugar's affect on the cholesterol leads to cirrhosis of the liver: its what my grandmother died from. My aunt was dx'ed with some cirrhosis at age 50 and they've been able to stop the progression through weight loss and diet. A few years back, my ALT and AST started to rise. Then an ultrasound showed that I had "fatty infiltration" in my liver, my liver was bigger (they chalked that up to inflammation in the liver) and I was dx'ed with NAFLD. I was put on a statin (pravastatin) for the cholesterol (in my blood) and surprisingly to the GP but expectedly to me, in the last year, the pravastatin has lowered my ALT and AST almost back to normal, has eliminated the fatty infiltration in my ultrasound report, and my liver size has gone down from 16 cm a year ago to 11 cm this year (which my GP says is a sign that it is healthier). So for me, it really seems like the diabetes / cholesterol problems are what cause the NAFLD and progression to cirrhosis (in my family), but like you found with resveratrol, a statin (pravastatin) has helped my liver (even more than it has helped my cholesterol). As for the triglycerides, if I eat a fairly low carb diet (no more than 15-20 grams carbs at a time), and don't overeat, then my triglycerides stay within normal. We sound like we have a lot in common in this regard…..

On the new biopsies the eosinophils in my esophagus and colon were gone, likely a combination of successful treatment of Qvar and Humira. The CT scan did show some minor abnormalities. But all in all, treatment is working well.

The joint issues and enthesitis continue to be a problem, even on Humira, but I think I'm even feeling better in that regard. The rheumatologist I saw didn't really have much new to offer except that he vacillated between A.S. and USpA and then ultimately said it didn't matter and wouldn't change treatment.

I've been dx'ed with "spondyloarthropathy" and am on Humira. My rheumy and I think it doesn't matter so much which spondy its pigeoned holed into in my case, the treatment would be the same: Humira. For me, having the enthesitis and joint pain so severely, GI inflammation always, a little psoriasis, and the more generic autoimmune / auto inflammatory stuff like dry eyes, mouth sores, and leg rashes (that last one only during the severest flares (each late summer flare), is what makes the doctor say "spondyoarthropathy". And I personally believe, so long as we are somewhere where we are allowed to be treated, call it what you will…..its the treatment that matters…and if the treatment helps, that's proof right there.

Like you, it helps, don't get me wrong, but nothing is ever perfect. I told the rheumy that it seems really good the first week, less good the second week. For me, I seem to flare a bit about a week after the shot, for a few days, then its like my body rallies back and I'll have few good days before the day or two before I can tell its really time for another shot.

The rheumy said we could move the shots up from 14 days to 10 days (as he does for crohns patients), but then one runs the risk of the body developing antibodies toward the Humira faster. So, since its ok, I've decided for now to stick to the 14 day schedule.

In the past, a flare would have me practically on disability. Now a flare is manageable, more than manageable. My SI was sore, but no Lat muscle spasms making it impossible to get out of bed, nothing like before thus far. The august flare on Humira was bad so I had to do methylprednisone taper for 10 days and then had to deal with a bit of flaring over the next month or two, but compared to several augusts over the past few years, I didn't have to worry about coming close to ending up on disability. And before Humira I was taking methylpred every 10-12 weeks; since June, I've taken it once (in august), that's a huge improvement. I took methylpred in april, started humira in june, took methylpred in august…..The rheumy said over time that I'd probably need the methylpred less and less and my flares would probably becoming fewer and further between and when I'd get them they'd probably be less in severity. I think that is panning out….maybe as my gut heals…..which brings me to the next part, below…...

The main GI (who was my main doctor there) ultimately consulted with some other IBD experts and actually called me back today. He has diagnosed me with Crohn's, though a mild case at this point.

I wasn't dx'ed with crohns as when I had my colonoscopy, it was "only" inflammation and "small crohn's like ulcers" in the ileum. And when my GI doc wanted to do the camera pill to look further up my small intestine, the insurance declined it (only for mysterious internal bleeding). So we did CT enterography that only picks up severe crohns that has caused proliferation of the tissues. My GI doc did say that since I wasn't flaring at the time and hadn't for months before the colonoscopy, it was possible I had crohns, and perhaps we should do a colonoscopy when I was in a flare (which of course I couldn't imagine putting myself through at a time like that). But I definitely have an inflamed bowel component to my disease. My rheumy thinks all spondys begin in the gut (now of course they're finding that RA also is due to bad bacteria in the gut).

But the big thing is this: for me, the Humira has helped my GI problems as much as its helped my enthesitis and joint problems. When I first started the Humira, I couldn't believe my bowels. I thought to myself, two things: 1) "I wonder if this is how normal people go to the bathroom" and 2) "I think this is the first time in my life that I am having normal bowel movements!" I've clogged the toilet (almost - several flushes, perhaps the plunger have fixed it) so many times since I started Humira. Almost no constipation. No diarrhea. No mucus in my stools. I think I have so much volume now because to adjust to the constipation over my lifetime, I just learned to eat a ridiculous amount of fiber….except for when the bowels were inflamed enough that things went the other way where I was not digesting my food at all and had the undigested food and diarrhea instead….then I went on a low residue diet until things got better. But on the Humira, what a difference. The gastritis is practically gone now. As for the bowels, week one, no constipation. Week two after a shot, the constipation was starting to come back, until the next shot. But recently, the shot before the last one, I actually had two full weeks of nearly perfect bowels. And same thing this shot, and its been almost two weeks now, due for a shot soon.

Bottom line: the Humira should help your crohns as well.

The overall experience made you feel taken care of and completely checked out. I also saw an allergist while I was there, but he tested me for nothing. The scheduling didn't go off as easily as I had been led to believe and I had to wait days in between consultations and procedures, but when all was said and done, it took a few hours more than a week.

It was mostly really good news. I'm not thrilled about Crohn's, but we are certainly on top of it and ahead of it. There's been a lot answered prayers in regards to this visit and I'm thankful I had the experience. As always, I'm thankful for the good folks and support here.

I am so thrilled for you that it was such a successful visit and that everything that was addressed was addressed so well. Sorry to hear it wasn't a more efficient process. But thanks for letting us know in case anyone else wants to / needs to go through the process.

And isn't that always the way. We're not flaring when we go to the important appointments. But, what I've discovered is that the good doctors don't need for you to be flaring to be able to diagnose you. That was what I found when I finally spent my own money and flew down to Philadelphia to get a diagnosis from Dr Brent at Einstein. Then I brought that piece of paper home with me and was able to get into a good rheumatology practice (one that for years had told me they didn't take new patients)…..

I'm glad you got some answers. And I agree that a crohns dx can be a bit unnerving, but the biologics do work for that as well as the joints.

Plus, every day, I believe we get closer and closer to fecal transplants being a mainstream procedure. I'm waiting for the day. With a dx of crohns on your part, you may be allowed to get one sooner than someone with "just" a spondyloarthropathy dx.

Thanks again for the update. Greatly appreciated. Its nice to learn from others.

Keren, thanks. Good to hear from you. Yes, I'm glad it isn't PBC. Sorry though that it is your struggle. Thanks for sharing your experience here.

Sue,

I do think we have a lot of similarities. What you shared about your liver was especially interesting. Yes, the Humira seems to be the most effective biologic (my third) and has almost (but not quite) cleared up my gut issues.

Monday I will start a two month steroid treatment aimed at obliterating the rest of the symptoms.

Thanks for sharing and for the insights.