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General Message Board for Ankylosing Spondylitis and Related Diseases
06/23/18 04:26 PM
The crazy thing is, all the special funds have this agreement NOT to cover Medicare. Also the Gov doesn't try to buy in bulk for discount. So UNFAIR!!!!!


OK, I get the BEST supplimental it is maybe $30 more than the cheaper ones, but covers so much. I have no co pays at any doctors office. Since I see a lot of doctors, all specialists, that saves that monthy fee right away.

As far as the meds go, they completely cover the IV infusion meds but NOT the injections. So UNFAIR!!! I have been on Actemra for 8 years, put me in the best remission but darn, monthly IVs, sigh so disruptive. The same med via injection is $300 a month.

Anna
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General Message Board for Ankylosing Spondylitis and Related Diseases
06/23/18 04:07 PM
Well even if I don't have progression on my x-rays, I think my rheumy should be able to believe me when I tell her that I don't feel well. She should know that it can take months and years for bloodwork to change. She shouldn't tell me I'm stuck with my current situation unless my x-rays are bad!

She hasn't done that, but you see what I mean. X-rays are one thing, symptoms are another. If a patient comes in and tells their rheumy that they have lots of symptoms coming back, then the doctor should offer something. I mean she could make a case that x-rays are important for whatever, but regardless of the results the only thing she can do is switch biologics or add something to my treatment.

But you're right in a sense. I'm kinda stuck in this bad place where symptoms come back, I KNOW something is brewing, but I don't have anything to show for it yet except my BASDAI would definitely reflect more active disease. Do I really have to get to where I was pre-diagnosis before we change treatment?

I never heard that radiographic progression was a pre-requisite to switching meds.
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General Message Board for Ankylosing Spondylitis and Related Diseases
06/23/18 02:21 AM
Can you let me know where you purchased this hemp oil? My husband was diagnosed with AS 40+ yrs ago. He’s been thru every pill know when younger..then about 5 or more yrs ago, they no longer worked. So he was moved to biologics...Humira which worked great for a several yrs..1x a month then had to be upped to 2x a month. Then stopped working. For the last 2 yrs he was prescribed Simponi, Cimzia and then going back to weekly Humira shots...sadly...no relief. We just went to his rheumatologist on 6/21 & his last 2 options (per the Dr) are to try Stelara or Remicade infusions. He recommended Stelara saying it is a diff type of drugs from others my husband has had & he is hoping that will help him. The Dr said he knew nothing about CBD oil so couldn’t recommend it but said he wasn’t adverse to it. Said he had patients trying it..but he was no help. Meanwhile my husband still suffers with pain & can’t sleep. I want him to try CBD oil. What strength do u recommend & where do u purchase yours? I understand you can buy it over the counter now. We live in VA & it just got approved. How often do u take yours? Do u just use a few drops on ur tongue? Thxs so much for sharing.
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General Message Board for Ankylosing Spondylitis and Related Diseases
06/23/18 01:08 AM
Hi. I'm new to the site. Just joined today. I'm glad to see this post. I have been recently diagnosed with AS after years of battling numerous symptoms. I have done a lot of research on the disease and am discouraged by what I've found because most sites online describe it as mostly a back issue. I have so many more symptoms and wish the informational websites would have more thorough information on AS. I'm left wondering if maybe I have a coexisting condition or are my symptoms normal? I have my symptoms almost every day just to varying degrees. Back pain, hip pain, neck pain, elbow pain, hand and wrist pain, knee pain, foot and ankle pain, eye pain with light sensitivity, chest tightness, nausea with stomach cramps, tingling in face, arms and hands, extreme fatigue, confusion and brain fog. Thank you for your advice. BTW my name is sad athlete because i use to be extremely fit and avid runner, I still exercise but can't always and have had to cut back on intensity due to severe body pain.
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General Message Board for Ankylosing Spondylitis and Related Diseases
06/22/18 05:28 PM
It's pretty much impossible to fuse in three months. I've never heard of it. Even when people start to fuse sometimes their X-rays barely show progression after 2 years.
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General Message Board for Ankylosing Spondylitis and Related Diseases
06/22/18 02:17 PM
My insurance covered Otezla with a biologic, but I had to fail MTX and other DMARDs first (I have basically been on them all - MTX, Arava, Sulfasalazine, Plaquenil etc). Otezla has helped a lot with my feet. Both with my achilles tendons and with plantar fasciitis. And with ankle pain and swelling. I still have some foot pain, but even that is much better on Otezla.

The other thing that really helped my feet was wearing supportive shoes (sneakers) all the time, with custom made orthotics. A podiatrist can make them.
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General Message Board for Ankylosing Spondylitis and Related Diseases
06/21/18 06:08 PM
Fingers crossed that Cosentyx will be your wonder drug.
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General Message Board for Ankylosing Spondylitis and Related Diseases
06/20/18 03:51 PM
Massage helps me a lot too. Knots can also be trigger points. If you look up myofascial pain syndrome, you will find info about trigger points. They're essentially knots in the muscles which hurt a lot. Here is a link: https://www.mayoclinic.org/diseases-conditions/myofascial-pain-syndrome/symptoms-causes/syc-20375444

Additionally, if you are flaring, then your muscle often tense up to support your joints better. This can cause muscle spasms, which can be really painful. I have a horrible time with this - the only thing that works is massage and regular PT.
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General Message Board for Ankylosing Spondylitis and Related Diseases
06/18/18 03:03 PM
anyone have this issue on beta blockers, been on them for a while usually resting heart rate of 55 to 60 and now in the 40's out of blue. Echo is fine. Waiting on recent holter test. Previous holter fine. No symptoms. On the lowest dosage possible 25mg.
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General Message Board for Ankylosing Spondylitis and Related Diseases
06/15/18 05:43 PM
ThreeG,

I was wondering how you are doing? Are you still on the Cosentyx? I am finally ready to give up on it. I will be calling my rhuemy to let her know, I want off.
Thing that scares me, is I have been through Enbrel, Humira and now Cosentyx. I am afraid shes going to tell me she cant help me.
The Cosentyx makes me feel like junk and I cant get past the exhaustion. Plus I have had IBS as long as I can remember and its been in overdrive since starting it. I wanted it to work so bad, I tried ignoring the side effects, but have decided that its not helping me enough to outweigh them. The worst thing was my hair fell out in two big chunks at the top of my head. Turns out approximately 30% of women complain of this, wish I had known that before I started it, at least it wouldn't have been such a shock.

Anyway, I hope that you are having better luck with it.
Let me know, I have been wondering how you were doing.
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General Message Board for Ankylosing Spondylitis and Related Diseases
06/15/18 05:07 AM
I have had 5 iritis flares in the last year. I am experiencing a flare in my right eye now. Stats off feeling irritated and looks pinkish red. By next day it feels like you were hit in the eye with a hard baseball. Light sensitivity followed by blurred and reduced vision and red streaks around the iris. Your pupil my even change shape. I learned the hard way that just because the pain stops there is still inflammation. At the first sign of pain and irritation see an eye doctor.
My first flare was a 4+. All I could see w in my right eye was white cotton fuzz (white blood cells). My iris stuck to my lens and my eye pressure was high. Took 6 months of steroid drops and dilating drops to finally stop the flare. My repeated flares in both eyes led to multiple floaters, starting cataracts, virtuous detachment and reduced vision. The floaters fade and you get used to them. I have over 30 spots and 2 squiggle lines in my vision all the time and I still work in an office with dual monitors. No way to have them removed. They will just come back.
I have had lots of blood tests. All came back normal just my ANA pattern is speckled. I am a 37 year old female and HLA B27 negative. It took three facet joint injections and a Rhizyotomy to reduce my back pain. It was my eye doctor that made the connection to AS and referred me to a rheumatologist who diagnosed me with Ankylosing Spondylitis. My hips are fuzed and I have a vertebra in my upper back starting to fuze. I also have scoliosis, hyper mobile joints and hyperhidrosis.
Humira works great. It's just when I have to pause treatment to take antibiotics for sinus issues then I get a flare and my pain increases. I now know what it feels like and I just start using steroid drops before I see my eye doctor. He makes sure I have a bottle of Pred Forte (steroid) and Homotropaline (dialating) drops at all times since AS can cause repeated flares. Humira works great at stopping any flares when I am on it.
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General Message Board for Ankylosing Spondylitis and Related Diseases
06/14/18 08:23 PM
A little off topic, but I stopped injecting Humira in my stomach as I don't think it worked as well as when I injected in my thigh. I have never heard anyone else mention, and obviously I have no proof.
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General Message Board for Ankylosing Spondylitis and Related Diseases
06/12/18 10:49 PM
I use Arthritis Strength Tylenol for pain. I would recommend pillows. Ask also for a warm blanket if that's allowed.
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Young Adults - The 20-Something Club
06/10/18 11:56 PM
Welcome Here.

Many of us did not get a diagnosis for many years so your experience is not unusual. Are you currently seeing a Rheumatologist or a primary care MD?

Which medications have you tried so far?
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General Message Board for Ankylosing Spondylitis and Related Diseases
06/08/18 04:19 PM
There have been some studies trying to link TNF inhibitors to a lower risk of CVD (cardiovascular disease), heart attacks, and strokes. Most of the studies I've read involved rheumatoid arthritis patients. I think results are mixed in those. There was a study released in 2015 noting a lower CVD risk in psoriasis patients. As for the sort of unique heart problems that spondylitis patients can develop, e.g. aortitis, aortic regurgitation/aortic valve inflammation, conduction abnormalities, I'm not aware of any large studies or trials looking at that. I've had this conversation with my cardiologist and what he told me was that cardiologists do not prescribe TNF inhibitors (or other biologics) precisely because there have been no good studies confirming their effectiveness for heart patients and conditions. Note that there are some case studies and very small studies addressing the effect of TNF inhibitors on a couple of types of vasculitis, Takayasu's Arteritis (TAK) and Giant Cell Arteritis. Those studies are mixed on the effectiveness of the TNF inhibitors in maintaining remission in TAK patients. If I recall correctly, the TNF drugs were not helpful to Giant Cell patients. But I'm not sure any of those studies are terribly valuable given their size. And I'm not sure they say anything at all about spondylitis-related inflammation's effect on the heart and vascular system, particularly the aorta. All these diseases do their damage via different mechanisms.

We're still waiting on the big clinical trial on TNF-a drugs and heart disease. I imagine Big Pharma would love to be able to market biologics as heart disease drugs (then everybody in the world will be on them); so hopefully we'll get some data soon.

Note that just because there's no conclusive data saying TNF-a drugs prevent heart damage doesn't mean TNF-a drugs don't prevent heart damage.

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General Message Board for Ankylosing Spondylitis and Related Diseases
06/05/18 02:18 PM
Winston, thank you for the help and reassurance that you provide for many members here, myself included.
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General Message Board for Ankylosing Spondylitis and Related Diseases
06/04/18 02:42 PM
by rheumatologist, i stopped taking biologics. Got neurologist referral next month. I am going for abdomen ct scan and other test to rule out carcinogen syndrome. Both lower limb tingling and numbness is not stopping and getting worse.

thanks for your answer banana, winston.
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General Message Board for Ankylosing Spondylitis and Related Diseases
06/04/18 01:03 PM
Yes, underlying all these manifestations is inflammation. Tumor Necrosis Factor is a cytokine which when it binds to tissues creates inflammation. The benefit as the name suggests is to prevent the migration of tumor cells into tissues, however, after years of autopsies which revealed that TNF was present at very high levels in people with arthritis, the search was on for a solution.

Concomitant to these studies was the United States sponsorship of "orphan drugs", ones which attempted to respond to suffering of it's citizens. I'm sure the business relationships are complicated however Johnson and Johnson created a new division Centocor https://www.pharmaceutical-technology.com/projects/centocor/ which over many years developed a medication designed to respond to Crohn's Disease and the suffering it caused. Centocor conducted trials of Infliximab (Remicade) in Europe over ten years.with startling success. The FDA approved it for treatment of Crohn's and it did not take long for it to be tested for Rheumatoid then AS and onward.

The story is legendary in the creation of a gazillion $ blockbuster drug and a medication which alleviates the suffering of millions world wide.

I am really pleased to hear how intimately connected you are in your hospital, there is a certain trust which develops and can be a real benefit for you as you seek answers. Safety, efficacy and results are the hallmark of starting a new medication. Best of luck to you.

Cell
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General Message Board for Ankylosing Spondylitis and Related Diseases
06/03/18 02:52 PM
I have posted for a decade it seems but I got the as colitis combo and have been having flair up for the past week doc increased prednisone to 15 mgs and added some ulser med I forget the name. I've had some relief. It's mostly the colitis part. Did start new bio stelera in April too. Any people have experience with switching bios and flair ups. Should I add some Imodium to my meds. Any suggestions would be helpful.
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Military & Veterans Board
06/02/18 11:16 PM
Hope you still are checking for replies. I was discharged from the the USAF (1972-1976) and worked on radar jamming equipment (ECM for electronic counter measures). I am now a retired RN. I had similar feelings about veteran disability benefits. I didn't decide to apply but was TOLD to apply and it seemed more like an order. I had a knee injury and had surgery while on active duty. I was grateful for the care I received and never felt disabled afterwards. I applied and expected a 0% rating at best but if denied that would not have bothered me. I ended up being rated 30% which at the time was probably $75 per month. I was handy while working toward my a BS degree - not in nursing but something else -- nursing came later. I paid taxes and considered it a tax rebate.

I haven't been diagnosed with AS but the symptoms are "AS like" but actually something else I guess. Anyway, my take on getting approved for VA disability so long after the fact --- probably difficult. AS is largely heredity and therefore you were prone to it... you would have to prove that military service caused it or made it worse. I think there are valid reasons for why military service may have triggered it but hard to prove because nobody seems to know exactly why it occurs except it seems largely genetic. That's just my opinion.

If the condition was diagnosed in the military, and you were being treated for it in the military, and your military records document it OR certain military activities made it worse and that was documented than maybe there is a good chance. The "upset stomach" part you mentioned makes a case for a related disease called reactive arthritis which apparently is very similar to AS. It seems like it may depend on who makes the diagnosis.

I say -go for it! Good luck with nursing school. The process of applying and exposure to the VA way will be a useful medical experience. Immune system diseases are only beginning to be understood. Keep us posted.
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General Message Board for Ankylosing Spondylitis and Related Diseases
06/02/18 08:43 PM
Wow.... seymour ----That is a fact and I couldn't say it better. What you said would apply to related diseases also I think. There was no rational reason for the pain which is how I usually "guessed" that something was happening. I think it is all a guess because sometimes there was something else causing the pain. If you have been diagnosed with AS than an NSAID should help some because it is an anti-inflammatory. In the early stages that's probably all you will be prescribed but have it checked out anyway.
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Military & Veterans Board
06/02/18 05:36 PM
I have a long established service connected injury involving my right knee and resulting arthritis. I have recently been approved for care in the VA system because of that condition and was "priority 2". It wasn't ever necessary to go to the VA in the past except for the initial evaluation but that was long ago. It was apparently clear cut and only involved a couple of visits and then was considered "static".

Now, 40 years later, I am retired and still have health insurance through my spouse. She plans to retire within the next year or two and we both will be medicare eligible. I was diagnosed with reactive arthritis 25 years ago but that had nothing to do with the military. I have had problems with complications from systemic inflammation and interested in care through the VA for my future needs. Since I am eligible, will my future care be only for arthritis in my knee or arthritis anywhere it exists since the treatments overlap.

I had bilateral total knee replacements a couple of years ago but not at the VA. The VA did see me afterwards and adjusted the disability rating from 20% to 30%. That seemed overly generous because technically, the arthritis in my right knee doesn't exist anymore. I have plenty of arthritis elsewhere

My hope is that the VA system will be my "medicare supplement" for medications and whatever else arises. I am interested in being referred to the VA in Denver and perhaps seeing a Dr. Caplan. He gave the talk recently for Spondyllitis Association of America about AS. It spoke to me since I have a related disease. I was seen last year at a local VA and they said they would be happy to refer me to the rheumatologist at that VA. I didn't ask if I could travel elsewhere. I probably could go to the University of Colorado where he also practices. I would rather it be through the VA and I can travel at my own expense if necessary. I would be interested in his recommendations but probably get ongoing care locally. Denver would work well because it isn't that far and I would have a reason to visit a relative.

Thanks
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Support Groups Information
06/01/18 04:58 PM
Here are a list of our upcoming #spondylitis support group meetings for this month. For all meeting details in your area, please visit our support group page: https://www.spondylitis.org/Support-Groups

6/2/18: Spokane, WA
6/3/18: Orlando, FL
6/9/18: Dallas, TX
6/9/18: Baltimore, MD
6/9/18: Phoenix, AZ
6/9/18: Lansing, MI
6/9/18: Southern California Parents
6/10/18: Los Angeles, CA
6/23/18: Seattle, WA
6/23/18: Boston, MA
6/27/18: Chicago, IL
6/28/18: NYC, NY
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Alternative Treatment / Diet Discussion
05/31/18 01:53 PM
I have been suffering from dry mouth problems for a long time. It's very painful, especially in the mornings. I really just wanted it to stop.

I have tried many products but none of them are effective enough. I've tried pharmacy after pharmacy, I've even taken a few from my dentist. It's gotten to a point where I've begun to trust them less and less.

I can see that many people are also having the same problems as me. It's honestly very tiring to deal with, don't you think we deserve a break?

I finally found a natural and effective remedy. This can definitely help some of us. It was very effective for me. This survey can help determine if it is for you: https://oilpulling.laurennaturals.com/survey
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For Parents and Teens
05/29/18 07:58 PM
Sending an invitation to any parents in the Southern California area that would like to attend our first parent support group meeting.

Saturday, June 9th, 2018
11:30AM - 1:30PM

San Marcos Library
2 Civic Center Dr.
San Marcos, CA 92069

More details here: https://www.spondylitis.org/Community/Support-Groups/Southern-California-Parents
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