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General Message Board for Ankylosing Spondylitis and Related Diseases
10/21/18 03:47 PM
Originally Posted by SouthernMoss
Psoriatic arthritis is seronegative. AS and psoriatic arthritis both come under the spondyloarthritis umbrella.

The increase in your general pain level does not necessarily mean you have permanent damage. There is not a direct correlation between pain and damage. The only way to know for sure whether you have damage is through imaging (x-rays and/or MRI).


Huh, didn't know that about PA. I guess I should be relieved about what you said about pain and damage, since I had an MRI of my left elbow about a year ago, and the only thing of note on the report was "mild" tendinosis. That concerned me for a while, until the doctor informed me that that actually just meant normal tendon wear and tear with age and use. That scan may be a bit old now, but even then my pain had already gotten pretty debilitating. I also had an ultrasound of both arms, and they didn't find anything of note then either.

Originally Posted by Winston
Alex140, have you been given the HLA-B27 genetic test? The genetic test is not 100% conclusive, but AS is strongly correlated with HLA-B27. Over 90% of people who have AS are HLA-B27+. AS and psoriatic arthritis are in the same family of immune-mediated diseases, but the link between peripheral psoriatic arthritis and HLA-B27 is very weak. So the results of the genetic test can help your doctor(s) narrow the list of possible diagnoses.


I somehow remember being told that I'm HLA-B27 negative, but I'll have to double check that.

So hypothetically, if I were to have PA, what would that change about my situation, if the method for diagnosis and treatment are so similar? Would I be worse off in the long run?
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General Message Board for Ankylosing Spondylitis and Related Diseases
10/21/18 03:37 AM
Sounds like a productive appointment. It normally takes multiple appointments for an AS'er to get diagnosed, so don't be disappointed that you didn't get an immediate diagnosis. The rheumy is taking you seriously, and hopefully the MRI will give you a definitive answer one way or the other.

Keep us posted.
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General Message Board for Ankylosing Spondylitis and Related Diseases
10/20/18 10:43 AM
Originally Posted by Sean O
For me October and November are typically the worst months of the year.

My pain control is not helped by the fact that I get nothing stronger than Tylenol No. 3s

Canada seems to be much more restrictive than the US on pain medication.

Also, I have some prednisone at home. Do you know the dose you take for a flare?


Yes, I agree, Oct-Nov are high on my list also.

I don't think Tylenol #3 will help much but may make you constipated.

Many years ago, the US gov't decided that it was everyone's right to be essentially pain free. Satisfaction surveys for health care providers were weighted heavily toward pain control. In order to get a good score, providers would freely give out pain medications. After all, it was taught, a person can't get addicted to pain medications if they were given for pain control. As a nurse, it seemed liked everyone rated ANY pain as a "10" and you were taught not to question anyone's perception of pain. Therefore pain pills were handed out like candy. This has created a huge market for pain medications and a huge problem as well.

Prednisone --- don't go there but anything greater than 5 mg is probably too much if taken longer than a few weeks but your system will probably recover. This medication is very risky.
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General Message Board for Ankylosing Spondylitis and Related Diseases
10/19/18 09:02 PM
Nordic Naturals Ultimate Omega 2X. Three capsules daily. A cheaper way is to use Vitamin Shoppe's liquid fish oil. I go for close to 2000mg of EPA. I actually got better results from the liquid but it is kinda gross and has to be refrigerated. This high dose will thin blood and suppress immune function somewhat but the last time I ran out of it I got an attack of iritis.
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Complications and Long Term Medical Issues
10/18/18 11:26 AM
I too am over 60 and have had AS most of my life. It is getting harder. I have been on Enbrel for many years. I do not think it helps at all with pain. My hope is it helps with slowing the calcification of my spine so I continue. I cannot take Non Steroidal Anti Inflamatories due to effects on my liver. So for over year I take low dose Tramadol in order to move. I too am sad how it has slowed me down but I keep on going. Too many things I hope to do before I can't anymore. Grandchildren fun esp. Best wishes to all.
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Support Groups Information
10/17/18 04:50 PM
New York City, NY- Thursday, November 1, 2018: https://www.spondylitis.org/Community/Support-Groups/New-York
Morristown, NJ- Saturday, November 3, 2018: https://www.spondylitis.org/Community/Support-Groups/Morristown
Baltimore, MD- Saturday, November 3, 2018: https://www.spondylitis.org/Baltimore-Harford-County-Support-Group
Lansing, MI- Saturday, November 3, 2018: https://www.spondylitis.org/Community/Support-Groups/Lansing
Denver, CO- Monday, November 5, 2018: https://www.spondylitis.org/Community/Support-Groups/Denver
Piedmont Triad, NC-Wednesday, November 7, 2018: https://www.spondylitis.org/Community/Support-Groups/Piedmont-Triad
Clinton, IA- Thursday, November 8, 2018: https://www.spondylitis.org/Community/Support-Groups/Clinton
The Woodlands, TX- Saturday, November 10, 2018: https://www.spondylitis.org/Community/Support-Groups/The-Woodlands
Oakland/SF, CA- Saturday, November 10, 2018: https://www.spondylitis.org/Community/Support-Groups/Oakland
Sioux Falls, SD- Saturday, November 10, 2018: https://www.spondylitis.org/Sioux-Falls-Support-Group
Waterville, ME- Thursday, November 15, 2018: https://www.spondylitis.org/Community/Support-Groups/Waterville
Elmira, NY- Thursday, November 15, 2018: https://www.spondylitis.org/Elmira-Support-Group
San Diego, CA- Saturday, November 17, 2018: https://www.spondylitis.org/Community/Support-Groups/San-Diego
Sacramento, CA- Saturday, November 17, 2018: https://www.spondylitis.org/Community/Support-Groups/Sacramento
St. Paul, MN- Saturday, November 17, 2018: https://www.spondylitis.org/Community/Support-Groups/St-Paul
Bristol, TN- Wednesday, November 28, 2018: https://www.spondylitis.org/Community/Support-Groups/Bristol
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General Message Board for Ankylosing Spondylitis and Related Diseases
10/17/18 04:37 PM
Originally Posted by worldofme
I'm not looking for medical advice just some info on risk tolerance.


I am glad you are not seeking medical advice because I have none to offer. Info on "risk tolerance" is highly individualized. You need to ask yourself "how much risk am I willing to tolerate". Nobody can answer that question for you. I understand your uncertainties in regard to your health care but realistically there are never any guarantees. The general consensus on this forum seems like the answer is "yes, biologics are worth the risk relative to the benefits. Some may disagree.

It seems like you have received 2 medical opinions from your Rheum and ID doc regarding the amount of risk there is. Your PCP had no opinion which is where I am at. Now it is your choice, whether or not you can tolerate the risk.

I suppose you could take an opinion poll and maybe get many more opinions, but it still boils down to "how much risk can YOU tolerate."

I wish you good luck with your decision.
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General Message Board for Ankylosing Spondylitis and Related Diseases
10/17/18 03:28 PM
Yes, beta blockers can affect the results of a treadmill stress test because they lower heart rate. It is harder to reach your target heart rate while taking the drugs. Your cardiologist knows you are on the drugs, though, and would account for it when reading the test results. Given your complex presentation -- AS + infections + muscle issues + previous heart-related concerns/issues, all of which you've discussed on this forum -- I think your questions are best reserved for your cardiologist.
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General Message Board for Ankylosing Spondylitis and Related Diseases
10/16/18 11:01 PM
It's not a problem just for the uninsured. Even insured patients pay out of pocket until they meet their deductibles, and $10,000+ deductibles are common these days. Also, $10,000-$20,000 annual insurance premiums are common. The lucky patients with insurance pay thousands of dollars in insurance premiums for insurance coverage that doesn't kick in until they've spent thousands of dollars on care. So I guess I find the "grass is always greener" arguments tedious. All our systems have their problems. In the US, it's (1) cost, (2) cost, (3) cost, and (4) complexity. (Before the ACA, it was (1) access, (2) cost, (3) cost, (4) cost, and (5) complexity). In other countries, it seems to be access or timely access. They're all roadblocks to care.
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General Message Board for Ankylosing Spondylitis and Related Diseases
10/16/18 10:08 PM
Originally Posted by sdot
Funny enough I tried the CBD Oil and it got rid of the pains, and then eventually they went away. So it's a non-issue at this point.


Cool I ordered some CBD oil myself to try out.

Do you remember what dosage you took?
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General Message Board for Ankylosing Spondylitis and Related Diseases
10/16/18 09:13 PM
Thanks, Kristine.

I had seen the first three things you show, but could not find the third site.

I also found the article about the training program, by Laurie M. Savage, from September 18, 2009. Issues sited in it include "airway management techniques, splinting techniques and transport considerations." The training is "to prevent further injury once a person has self-reported, in some way, that he or she has AS".


I have a good relationship with my PCP, rheumatologist, and orthopedic doctor, and they are very accommodating. Also, my current eye doctor is very helpful and very knowledgeable about AS.


I think that something in a very concise form would be very helpful to carry, as the provider would be more likely to read it.


My current major issues are with my legs and feet for which I am having therapy, and with what the ER doctor says "may be" trigeminal neuralgia.


Evelyn
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General Message Board for Ankylosing Spondylitis and Related Diseases
10/16/18 05:01 PM
Originally Posted by jtmak
Are AS patients at risk for additional symptoms from the shot? Was considering it. Thank and good luck!


No, I don't think so. In fact, I think AS patients on biologic therapy are at risk for having a lower immune response to the vaccine, i.e., the fear is the vaccine won't work as well in those persons. It's still recommended that you receive it if you are old enough. If I were old enough, I would get it because shingles can be quite awful. My mother developed shingles after falling and breaking her shoulder. She said the shingles hurt worse than the broken shoulder. Just know that people are reporting more side effects from this new vaccine than were reported with the old vaccine. Don't be surprised if you feel crummy for a few days after getting the shot.
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General Message Board for Ankylosing Spondylitis and Related Diseases
10/15/18 11:11 PM
I'm beginning to wonder if, rather than a series of things that have seemed to have gone wrong this year, it's really all just been ONE THING.

I got better this weekend but I was thinking it was the antibiotic. Now I'm not so sure. Here's why. On Friday I worked out and noticed the dry mouth and sewage taste in my mouth got worse right after the workout. Which made me wonder about my stomach. So I took a Zantac. And other on Saturday. The mouth dryness and bad taste went away. Saturday was better than Friday and Sunday better than Saturday. So on Sunday I didn't take a Zantac. Just to see. The dry mouth and foul taste returned this morning. So I took another Zantac.. And it went away again. This points me, once again, in the direction of my stomach. The answer isn't just to keep taking Zantac,. That's only masking the problem.

And when I think of ALL the issues I've had this year ... first the trouble sleeping because it felt like I had a nervous stomach. Then the abdominal fullness after I ate. Then the feeling full/nauseous after just a few bites of food. And now the dry/foul mouth. It ALL seems to point toward a stomach issue. I've had a sigmoidoscopy and an upper endoscopy which both came back negative. Which leaves two possibilities.

One is that it's all nerves. That I'm doing this to myself because I've become so self absorbed with my medical issues that I've driven myself into a state of perpetual anxiety. Anxiety can have a BIG impact on the stomach. So I don't discount this possibility. That said ...

In December of last year I was lifting weights at the gym and I decided to add leg presses to my routine. After a couple weeks of this I woke up one morning with incredible pain in my lower abdomen that radiated down to my left testicle. I saw my PCP about this, a general surgeon, a sports medicine doctor and a urologist. No one came up with anything. The overall intense lower abdominal pain faded but I was left with, and still have, a mild pain in my lower left abdomen that has, as of yet, to be explained. I was going to have it CT scanned but my insurance denied the claim and it's $5,000. So I never did it.

I've always wondered if there could be a small hernia in that area ... one that doesn't leave a bulge and is hard to detect ... that is obstructing my small intestine and, well, backing up the works so to speak. The pain has never gone away but it's never been so intense that it really bothers me. It's just something I notice is there and have learned to live with over the last 10 months.

So either a physical issue is causing my stomach problems or a mental one is. I just don't know which. But my stomach/abdomen seem to be at the root of it all.
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General Message Board for Ankylosing Spondylitis and Related Diseases
10/14/18 11:22 PM
Originally Posted by seymour
Originally Posted by Mary Beth
Originally Posted by seymour
Do you know what’s causing the stiffness?


Calcification, I assume. I mean, it's permanent. Been like this for many years and my inflammation levels are low. ROM in my chest wall and lumbar spine were also 0 or close to it when I started Humira, but both those returned to normal.

The problem is that with other joints, PT will do exercises to force them to move but they can't really do that with your neck. I'm not sure if I'm fused or not because I haven't had x-rays in years; not much point as I am in drug-induced remission and not losing ROM elsewhere.


I would assume the same for me as I had lost a lot of neck ROM even when my x-Rays showed no fusion. I always assumed that at least at that time it was soft tissue related.

I have a friend who’s 56 and he only has about 20 degrees on all sides and he has syndesmophytes but they’re not fused. So I guess the lack of motion can come from the body blocking the movements through muscle spasms?


I think so, yes. I have visible spasm in my neck and rather chronic knots in the muscles that run up the side of your neck and also across my shoulders. Massage can work out the knots but they come right back. It doesn't hurt any more but I think that the nerves are just exhausted, frankly. That much spasm SHOULD hurt. Though I've been told by several doctors and physical therapists that I must have a high pain tolerance. I dunno, I think I'm a wimp.
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