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General Message Board for Ankylosing Spondylitis and Related Diseases
10/18/18 04:21 AM
Has anyone been through the majority of medication options and st ill not have any relief? I'm currently on Cosentyx and am having a hard time. It literally works for 2-3 weeks and I'm back in pain or in a flare. Any suggestions?
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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
10/17/18 02:17 PM
So guys / gals, I really really need an expert opinion from someone who has taken TNF blockers for a while. I'm getting really conflicting information from both my PCP, ID & Rheum.

Apparently, my next course of action is to start a TNF drug. The doctor (Rheum) have suggested this is a good course for now. My ID doc says if someone with prostatitis was to ask him if its okay to treat a patient with TNF he would say "yes" without a hesitation. PCP says he doesn't know what to say.

Knowing this is great, but however I have chornic prostate infection with known staph & e-coli, but we can't seem to get rid of them despite countless Abx. There is no point of throwing bunch a abx at something for months at this point. My worry is what if one of these bad boys from latent phase become active and go right into blood stream causing an infection. Now, of course I may be looking too much into this but what if.

While I was researching TNF and it's side effects there are lot of literature out there stating TNF can cause endocarditis or such. I really don't want another problem added to the list.

I have try NSAID and there okay. They help for few hours but really messes with my BP .

I'm really lost and I really don't know who to turn to for some advice. I hope someone here can shed light. TNF will be the only things my Rheum said that will slow down the spondy.

I'm not looking for medical advice just some info on risk tolerance.
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General Message Board for Ankylosing Spondylitis and Related Diseases
10/17/18 02:12 PM
I'm on very very low dosage of beta.
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General Message Board for Ankylosing Spondylitis and Related Diseases
10/17/18 02:12 PM
Does being on beta blocker skew the results?
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General Message Board for Ankylosing Spondylitis and Related Diseases
10/17/18 12:50 PM
I did one a year ago when I was having dizziness issues and my score was a 6. Also had an echocardiogram, which showed nothing. So that's ONE thing I don't have to worry about. At least for now.
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General Message Board for Ankylosing Spondylitis and Related Diseases
10/17/18 02:24 AM
Intermediate risk (score between 4 and -11) indicates 5-year survival of 90%
Unfortunately, it,s not very useful test, just for some heart problems. My stress test show low cardiovascular risk, but i was dx with Heart Failure with Preserved Ejection Fraction; Vasospastic Angina and Exercise Induced Pulmonary Hypertension. The prognoses for those diagnoses are 50% in 5 years dying , so, compare to this stress test is totally wrong. I think stress test is good for diagnoses of blockages.
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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 10:08 PM
Originally Posted by Winston
In the US, the wait time may also be one month, and then you'll get a bill for $1700 or some other ridiculous figure.


That would be for the uninsured...in many cases it never gets paid and the provider writes it off and passes the cost onto the insured. The insurance company usually doesn't pay the full amount either but a good part of it. The remainder it billed to the individual which, with luck, is 10-20% of approved amount. But if you are lucky and have reached your out-of-pocket maximum for the year then it is 0%. Of course there are other little things like deductibles, co-pays, preferred providers and such. Then when you start to understand everything, you get to switch to government provided insurance ... aka medicare. I haven't figured out that system yet.

I think that the person who dreamed up the system was having a nightmare.
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General Message Board for Ankylosing Spondylitis and Related Diseases
10/16/18 10:08 PM
Originally Posted by sdot
When people talk about Canadian 'Free' Health care, here are some things to remember.

My doctor referred me to get an ultrasound of my shoulder. The wait time is one month.


I'm in Quebec and waited 2 days for my last ultrasound.
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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 08:22 PM
In the US, the wait time may also be one month, and then you'll get a bill for $1700 or some other ridiculous figure.
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General Message Board for Ankylosing Spondylitis and Related Diseases
10/16/18 06:54 PM
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.
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General Message Board for Ankylosing Spondylitis and Related Diseases
10/16/18 06:53 PM
When people talk about Canadian 'Free' Health care, here are some things to remember.

My doctor referred me to get an ultrasound of my shoulder. The wait time is one month.
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General Message Board for Ankylosing Spondylitis and Related Diseases
10/16/18 06:25 PM
I'm not 100% positive but I think this is from your SI joints. I get it too sometimes. I had a period this summer where my legs were all sore and my buttocks hurt when I sat for too long. It eventually went away and comes back sometimes when I have a bad day.

I think you should test your inflammation blood levels or possibly do an MRI as it seems your disease isn't as well controlled as it could be.

Have you tried CBD oil?
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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
10/16/18 03:38 PM
Well, my pharmacy has been out of Shingrix, so I finally went yesterday after work to another pharmacy in town (same chain) to get the first shot. I woke up in the middle of the night with a very sore arm. so I got up and took a Celebrex. Between the arm pain and my husband's bi-pap mask leaking (it makes a loud snoring noise when it leaks) I did not sleep well the rest of the night. I felt like I had been hit by a truck when I got up this morning. I'm not sure how much of that was from the shot itself and how much was from lack of sleep. I'm feeling a bit better now that I'm up and going. I have a welt on my arm that looks like a mosquito bite, and my arm still hurts when I move it (muscle pain because the shot is intramuscular). I'm running low-grade fever (99.5). I just took some Arthritis Tylenol, so hopefully that will help with the arm pain.

I've gotta say that even with the discomfort I'm experiencing (and presumably will again with the 2nd shot), it's definitely worth it. I know several people who have had shingles, and it is a terrible thing to have to endure.
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General Message Board for Ankylosing Spondylitis and Related Diseases
10/16/18 03:22 PM
Hi,

Yeah I’ve been having this for the last few days, along with buttock aches and all the other stuff. It’s a new one on me, which is fun. I’m not diagnosed yet, but my brother has AS and I’m pretty damn sure I do too.

I hope it goes away for you soon!

AH
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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
10/15/18 10:17 PM
my understanding is that Ortezla was not found to be effective for axSpA.

I like Mary beth's idea of considering 1/2 life of meds when talking with doc.

Dr. Caplan seems to do a really good job of explaining what is going on with AS and what the various meds do to target the process. https://www.spondylitis.org/Seminar...tis-educational-seminar-from-denver-co-1

hope this helps,
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General Message Board for Ankylosing Spondylitis and Related Diseases
10/15/18 09:35 PM
Hello @efran,

Thank you for your post. I am sorry that you had a bad experience at the ER when getting your CAT scan. Unfortunately, not all personnel and hospital staff are trained properly when handling patients with specific concerns. I have listed below three links to articles and videos that go into details about patient handling for Emergency Response Teams. I hope you find them helpful.

https://www.spondylitis.org/Spondylitis-Plus/Spondylitis-Plus-Articles/Fall-2006
https://www.spondylitis.org/For-First-Responders
https://www.spondylitis.org/Medical-Emergency

In addition, I would like to link you to an article that was written in our Spondylitis Plus Summer 2013 issue. Pages 8-13 highlight and discuss your concerns with the issues you faced with not being intubated properly. I hope that you fund this helpful and it might be a good idea to print this article or share this information with your surgeon in the future to help them get a better understanding on the concerns that Spondylitis Patients face during surgery and anesthesia.

https://www.spondylitis.org/LinkClick.aspx?fileticket=GnEqfJQN4OE%3d&portalid=0

If you have any other questions or concerns please do not hesitate to reach out to us. Have a wonderful week.
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General Message Board for Ankylosing Spondylitis and Related Diseases
10/15/18 07:52 PM
I just did mine and I thought I was able to keep up with test, which I did I ran did it all. At the end while tech was removing my equipment I notice the computer screen, which said DUKE Treadmille score is 0. Modersate to High Risk.

I don't see doc until next week but I'm really in lost here.

Anyone here have exp with this type reading?

They say anyone with duke score > 5 is good well I'm below that.

My cholesterol is good no issue so how this?
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