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General Message Board for Ankylosing Spondylitis and Related Diseases
04/21/19 07:14 PM
Your story sounds quite familiar to me. I've got terrible pain in my peripheral joints, no spinal involvement yet and it doesn't seem like my pain is as bad as yours. Pain started around 16 y.o., diagnosed at 31 (32 now).

There are days when I can't even move my fingers when I wake up, and just holding my toothbrush is alarmingly painful. But there is no sign of fusion or degeneration in any of my joints! It might be why some of us take so long to get diagnosed -- it's an extremely variable disease. I hope you find something that works better for you!
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/21/19 06:59 PM
Thank you very much for the tip! I will look into those gloves!
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/21/19 05:17 PM
From one Texas girl to another. There is so much variation in this disease that we are like a rainbow of possible manifestations. So yes you can have severe pain without fusing but you actually do have fusing. It has been discussed in past years on here that there is more than just the HLAB27 gene that can trigger AS. This "constellation" of genes affect how we manifest the condition. Also in women and probably men hormone levels play a role. I had severe fatigue for about two years before the chronic sacroiliitis kicked in. I do believe I remember someone saying that their fatigue was their worst symptom.
What is interesting to me is that you said that your fusing had reversed spontaneously. That is interesting. Did your doctors tell you that? Were your images done by different clinics?
The forum tends to be quiet on holidays and weekends so folks may wander back and comment over the next few days.
Happy Easter, Danielle
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/21/19 01:41 PM
Hi everyone,
My pain level has been very severe since age 18 when it started. I’m now 35. I have not been able to work. I sound more severe than others in that I don’t have flares. It’s bad bad or crisis. No good days. I am HLA B27-. I’ve been on biologics from day one. Every description of AS matches me, but I feel like I’m missing something. I have spinal changes (cervical disc issues, facet arthritis, foraminal stenosis, radicopathy, and a few other things) and sacroilitis (previously almost fully fused on right side and partially on left). The fusion reversed somehow, which I just attribute to biologics. However, I don’t think my pain and stiffness correlate to what I show on xrays.

I’m seeing a new brilliant rheumatologist who thinks it is AS and Crohn’s and Colitis. But it has felt like just another wild goose chase of tests that won’t lead to improvement anyway. I’ve done this for years and feel finished chasing my tail.

Are there other AS patients without spinal fusion (despite 17 year disease) with severe pain, stiffness, and fatigue that seem worse than everyone else? A relative described an employee with AS and she is much better than I am. She can work a physically demanding job and I’m having so much trouble being a stay at home mom to one child. I haven’t found another disease that matches me better than AS. Do you think I’m missing the true diagnosis or does pain level just vary from person to person? One doctor told me it has to be AS because there is no other disease that causes sacroilitis. Maybe my brain is wired wrong after so many years of pain. Biologics may have prevented fusion, but they don’t dazzle in the pain and fatigue department. It does help morning stiffness and smaller joint pain though.

I’ve read many descriptions and Dr.Khan’s book described me exactly. Even the same order of symptoms appearing. I’m a woman and the disease can be different in women, but his book was spot on.

I have lost all hope and it’s daunting thinking about living more years like this and dealing with other health issues as you age. I would appreciate any feedback! Thank you!
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/21/19 01:39 AM
Hi kimarch,the forum tends to be quiet on the weekends and holidays so give it time you will get responses. You probably will be heading in the direction of a biologic but it will need to be when you're ready for it. Everyone knows when it's time. Cosentyx helped me more with peripheral but I have been on it for two years and it doesn't work as well anymore. Haven't been on sulfasalazine but many people on here have. I also use IMAK arthritis gloves. I use them at night during the winter.
Danielle
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/21/19 01:31 AM
I came to the forum today to ask a question I may have already figured it out. At least for myself. The question was, Why is it so hard for me to set limits(and boundaries to a certain extent). I have had therapy. I have even done talk groups. I know that with my impairments that I need to take care of myself first so I don't become a burden to someone else. But within my family it is extremely triggering when I am expected to pick up the slack for someone else's crisis.
I will try to keep the background to a minimum. First of all I learned early on that it is good to do what you can for people without overextending yourself. But there can be a fine line there. I have three sisters with boundaries all over the place. One won't help anybody, one will help everyone, one will help everyone but they won't help her so she leans on people who may not have as much to give while she gives to people who won't help her. I am the youngest and the only one who works. One hasn't worked in 30 years, one is on disability and one is retired and over 65. I have AS, insulin dependent diabetes, sleep apnea, PTSD and the laundry list goes on. I went back to work 7 months ago not because it is fun and I have energy to burn but because I need the money to survive. The assault on my boundaries goes way back to childhood and is ugly(when is it not?) My mother was the worst and I left home at 18 basically to set a boundary between my mother and myself.
My sister is sick and her daughters won't take care of her. She has Cdif and is disabled and my oldest sister took her to the hospital. Her daughters who she does so much for cite their children as the reason they can't help their mother. I took care of my father during and after his bypass while I was breastfeeding my daughter exclusively. I stayed with my grandmother after her stroke on the weekends while I was in college. I am in my fifties and my parents and grandparents are gone. It is the younger generations turn. I am tired.
So the question is again why is it so hard? It is hard because I come from a family that makes it hard. They wear you down until you give in. So that it become much more work to stand your ground rather than just give in. They make you feel guilty.
This forum is important to me. It has validated many things I have gone through. The nitty gritty day in day out living with ankylosing spondylitis. I look up to people on this forum and have learned much. What I have not done is speak up some of the time I should have. When I had my flare a few months ago I found support from people who understood it the way no one else could. Few words were needed.
Thanks for reading and I simply appeal to the collective wisdom of the group.
Danielle
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Women Only Message Board
04/21/19 12:34 AM
Have you had any luck? I have a pretty similar presentation to you, and many years of baffled doctors... rheum #4 things it's a peripheral form of spondyloarthritis. Methotrexate and plaquenil have done nothing for me, bloodwork and x-rays all normal, hla-b27 negative. The deciding factors in my dx were that it's asymmetrical (unlikely to be RA) and the only thing that helps lower the pain levels is exercise -- rest makes it much worse.

Anyway, I'd be very curious to know how you're getting along now!
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/20/19 09:26 PM
Hello all, I'm a 32 y/o female with peripheral spondyloarthritis, looking for help with meds.

I've had peripheral joint pain (seems to be enthesitis) and SI pain since I was in high school, so half my life. It got worse and worse for years, and 10+ docs (3 of them rheums) couldn't figure out what was wrong with me. No visible joint damage in imaging, blood tests always came back normal, HLA-B27 negative. Family history of both psoriasis and RA. In my twenties I discovered exercise helped the pain, but it started getting worse again and last year I FINALLY found descriptions online of peripheral spondyloarthritis. It was like reading descriptions of myself, eerily spot on, and my current doc agrees that's what I have.

I'm curious to know what drugs have worked for others with this diagnosis. Over the years, I've been tried on meloxicam, colchicine, plaquenil, methotrexate, and leflunomide. None has helped at all, in fact it's just getting worse, to the point where I can't even bend the fingers on one hand when I wake up. Prednisone helped the one time I tried it, but that's not a long-term solution.

Are there other DMARDs I should be trying? Sulfasalazine seems like the big one. Or is a biologic the logical next step? I'm moving soon, and I know I will need to talk to my next doctor about this, but it feels like it would be helpful for my emotional state to know what other people's experiences are. I have had daily pain my whole adult life, and I am so incredibly frustrated that no doctor could figure it out, and now still can't figure out how to treat it. I'm worried about long-term degeneration and decreasing quality of life if I can't figure out how to treat this disease. Thank you for any words of wisdom.
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/19/19 05:00 AM
It's very possible she is unable to get all her mail delivered everyday. Their first priority is Amazon packages. They all have to be delivered the day they are loaded on the truck. They will stop delivering mail, if they have to, to make sure all the Amazon delivered. They just bring back whatever mail is not delivered and try again the next day. It is a nationwide problem right now. Those drivers are being terribly abused right now by Management. Some are working seven days a week just to keep up. Vacations are being denied as well depending on how backed up they are at the DDU (Destination Delivery Unit--your local Post Office). She probably needs some encouragement right now. I saw one Ex USPS guy on YouTube who has PTSD from combat in Iraq. He was so stressed out from work that his PTSD was getting out of control. The VA Doctor sent a note to his Manager telling them to cut back his hours and not make him work seven days a week and his Manager told him "its not happening here." He had to get his Union Boss involved and they finally followed the orders. He actually had to quit because of it. I have been in the Logistics Industry for 30 years and stay up to date on what is going on.
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/18/19 11:04 PM
Thanks to your post I checked with my MD here in Washington. Insurance companies and hospitals speak the language of "risk". If you are already at a high dose it would be prudent for the hospital to avoid risk of switching. If your doctor will support it, I would get an inexpensive attorney in my pocket. That also increases their level of "risk" which is the word in their mind for money. Creating an exception for you cost's them less than a problem. Keep us up to date please.
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/18/19 03:58 AM
Much better than the the Alzheimer's forum. Everyone logs in only once.
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/17/19 01:57 PM
So sorry for this experience. I would consider asking the other center if they would provide the remicade since they will be more familiar with custom meds. The systems in place at the other clinic focus on patient safety and prevention of cross contamination and as in hospitals, we the patient will always assure this by answering privacy questions. Just my feeling. Good luck!
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/17/19 01:07 AM
I am in Texas, and it is the hospital that will no longer carry remicade. it is one of the few infusion centers I can go to under Tricare. The other is an infectious disease center. shocked
When I see my Dr. this will be discussed for sure. I am one step away from the highest dose, so he was already looking for new medications, this might be enough to push that. It is frightening either way. If he will continue to support me getting remicade, i will stick with it as long as I can. It has given me back my life.

Thanks Rich! I wish everyone finds their "liquid gold"
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/17/19 12:59 AM
I knew this day was coming, but you are the first person with AS that I heard this was actually happening to and that they weren't crazy about the idea of it.

depending on what state you live in (insurance is state regulated), your doctor may be able to have the prescription filled as written (not forced to use a biosimilar).

Congratulations on the 5 years! whatever happens I wish you continued success.

kind regards,
Rich
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/17/19 12:23 AM
Originally Posted by sdot
I am not sure how much better a group of sick people can be.


Truth.
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/16/19 10:18 PM
Good afternoon all. Been a very long time since I have been around. I have been in a medicine induced remission for about 5 years now YAY!

BUT...

when I got my infusion yesterday, the nurse informed me that the hospital was changing to Inflectra and going to be stopping giving remicade. It is not the same medicine, it is similar, but it is not the same, and I don't like the uncertainty of going to a med that i DON'T know if it works... of being FORCED to use a cheaper medicine when the hospital isn't the one paying for it! My Insurance and I am!

I see my Rhuemy before my next infusion and will be discussing this with him.

I came here to ask if anyone has had to make this switch, and if you have, how is it working for you?
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/16/19 07:40 PM
Hi Jacruz, any update from the MRI? Whatever the diagnosis is, I hope you find an effective treatment plan. Kind regards, Rich
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/16/19 12:48 PM
I was just given my medical marijuana card. I am still in the figure out what works for me phase. As I want something that I can use and still function at work. So far I have found it makes me giggle then want to sleep, but the pain has not been relieved.
Again there are so many options, I am sure I will find something that works, but it is expensive as insurance does not cover it.
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/15/19 01:13 PM
ER? Notice what? I asked my Rheum for pred as I was hoping to move to a diff biologic and needed a little something in between, but realistically I knew that it wasn't going to work as nothing works for the pain, so I just needed it to help switch into my more productive and fun loving manic side.

You have to realize, the only people who care about us, are ourselves and whoever can make a profit from disease and disease control. That is it.
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/15/19 01:06 PM
I am not sure how much better a group of sick people can be.
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/15/19 01:04 PM
Cannabis works great. The actual medical stuff that is grown and sold from actual medical cannabis companies are great. some of the 'street' stuff is hit an miss and you will have to try quite a bit to find out what works. This may be the difference between the handful of strains the medical places grow, and the thousands of street strains that are hit and miss.

I would like to be on it right now, but I do find it a bit hit and miss, so sometimes it's easier to reach for the pills because you know for $x you are getting whatever relief, and with cannabis, you may have to spend a bit to find something that works for you, and sometimes that could be much more expensive of a process.

I was able to get into a routine where I could have sworn I was cured, no pain what so ever, but I had to do a lot of it and build my tolerance up to a good degree and then it was easy sailing, but of course this for me was an easy 400-500 a month.

Everything is possible the more money you have,,,

Magic Johnston gets HIV, live forever...

Me or you get HIV, we're dead before we even see a single prescription and in some cases before a diagnoses.
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/15/19 12:57 PM
I got diagnosed in 2015 and it has been a nightmare. I would run for politics if I knew that I would be able to win and send the whole ministry of health to the gulags.
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/15/19 12:54 PM
Pros - You're on an expensive drug that is supposed to help.

Cons - The drug is so expensive and someone else has to decide if you should suffer or not if you don't have deep pockets or a great medical plan.
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/15/19 12:53 PM
I get it, but probably due to other issues. One theory that was told to me by a doctor is that this may be due to allergies. I have never had allergies before, however I was told that this disease wreaks havoc on you and any little issues you had may be worse or you may pick up some sensitivity... so that may be a clue, not sure...

I would imagine if your ribcage was fused, it would probably hurt to breath in larges breaths.
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General Message Board for Ankylosing Spondylitis and Related Diseases
04/15/19 11:21 AM
My take is that most doctors don't understand this disease and the pain it causes. Most often you hear stories about AS people being told by their doctors that the pain is in their heads, or physio will stop the pain.

For my doctor to give me Naproxen over Tylenol was a struggle, and when I requested Diclofenac to see if it would handle the pain better, I was treated like I was a junkie trying to get my hands on meth or something.
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