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Recently got diagnosed with Axial SpA very worried #282538
02/02/19 03:01 AM
02/02/19 03:01 AM
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Hello everyone!

I recently got diagnosed with axial SpA back on november 2018. I have gotten 3 second opinions from university hospitals in my local area all recommending that I take humira. I am wary of the side effects but I will have to take it. As of right now I only have mild bilateral damage of my SI joints and stiffness of my back spondylitis that prevents me to only bending down to my knees maximum that's it. Everything else is normal but I do get pain on my elbows, shoulders and neck especially stiffness and very mild closing of one of the bones there. My rheumy said this has probably been going on for 10 years in order to see damage to the SI joints. I am 31 now should I be really worried?

10 years of disease being untreated seems really scary... as I hope that I still have caught it in time to achieve a level of remission and lead a normal life. I am hopeful newer meds will be available in the future to really kick this disease for many people out the window. So, I have been generally really scared reading about all the co-morbidites that come along with this condition. I often wonder if i'll be in a wheel chair or be in too much pain to do anything. Reading some of the posts here on how some of you are struggling so much with pain and quality of life has made me wonder what it will be like for me in the future. Are the majority of people with this condition doing well in terms of leading an active life or is that more of a minority? Thank you for all the future replies!

Re: Recently got diagnosed with Axial SpA very worried [Re: Caturday] #282539
02/02/19 01:48 PM
02/02/19 01:48 PM
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Winston Online
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Welcome.

Many AS sufferers have mild to moderate disease and live relatively normal lives. They don't post as often as others with more severe disease because they don't need as much help and are out living their lives. Drugs like Humira have been game changers for them and many others.

Should you be worried? Well, you're going to be whether you should be or not. That's part of it, especially in the beginning. Don't underestimate the emotional/psychological toll that being diagnosed with a chronic disease can have on you. Take care of yourself in that respect. Exercise (anything you can do, even if it's just walking) and talk therapy with a psychologist or social worker trained to work with chronic pain sufferers help tremendously.

As for the physical toll that the disease has already taken on you, we can't really tell you what to expect there as this is a funny disease that presents slightly differently in everyone. Some people with mild symptoms end up fusing, and others with severe symptoms never do. It's impossible to predict. Humira can help with the stiffness, which should improve your range of motion and quality of life in the present. It doesn't always make the pain go away because the pain is sometimes caused by physical damage that has already occurred. You'll just have to wait and see how it helps you. Give it some time. It can take 6 months or so for you to notice any improvement. There is also good evidence now that TNF drugs such as Humira significantly reduce progression of the disease. Hopefully no one will end up in a wheelchair as a result of AS in the future. So put that out of your mind. It's not helpful to think that way.

You are young and you have that going for you. So many new drugs are in development. The future is very bright indeed. If I might elaborate on the suggestion I made above: Stop imaging worst-case future scenarios and focus your energies on making lifestyle adjustments now that will make your personal future as good as it can be, no matter your medical prognosis. Focus on what you can control: Exercise, diet, getting good sleep, reducing stress in your life, etc. I think it's also a good idea at your age, when you still have time to change course, to think about what you do for a living and whether any changes might be necessary there so that you can continue working/participating for as long as you can. One way to reduce stress (at least in the United States) when you have a disease like ours is to, if possible, move into a job with secure benefits (e.g., health insurance, disability insurance, etc.). And if you, for example, have a physically demanding job, consider whether you'll be able to continue doing that long term. Don't wait until mid-life to think about these things.

Hope this helps.

Last edited by Winston; 02/02/19 01:49 PM. Reason: typo
Re: Recently got diagnosed with Axial SpA very worried [Re: Caturday] #282541
02/02/19 03:35 PM
02/02/19 03:35 PM
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SouthernMoss Online
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Excellent advice from Winston.

As to Humira side effects, the scary ones are rare. Very rare. When I started taking Humira, my rationale was that the odds of damage from untreated (or under-treated) SpA are much higher than the odds that Humira will cause cancer or some other serious condition. And my rheumatologist monitors me very closely with office visits and blood work every 3 months.So if something did go wrong, it would be caught and dealt with very quickly.

My biggest piece of advice: stop googling. And when you do google (because we know you will wink ), limit yourself to reputable medical sources. Avoid the horror stories where everyone tries to sound like their case is worse than anyone else's. Avoid the images of little old men all hunched over. Stressing out about things that may not ever happen is counterproductive.

Keep us posted on your progress.


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis, both currently in remission
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Recently got diagnosed with Axial SpA very worried [Re: SouthernMoss] #282543
02/02/19 07:44 PM
02/02/19 07:44 PM
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Originally Posted by Winston
Welcome.

Many AS sufferers have mild to moderate disease and live relatively normal lives. They don't post as often as others with more severe disease because they don't need as much help and are out living their lives. Drugs like Humira have been game changers for them and many others.

Should you be worried? Well, you're going to be whether you should be or not. That's part of it, especially in the beginning. Don't underestimate the emotional/psychological toll that being diagnosed with a chronic disease can have on you. Take care of yourself in that respect. Exercise (anything you can do, even if it's just walking) and talk therapy with a psychologist or social worker trained to work with chronic pain sufferers help tremendously.

As for the physical toll that the disease has already taken on you, we can't really tell you what to expect there as this is a funny disease that presents slightly differently in everyone. Some people with mild symptoms end up fusing, and others with severe symptoms never do. It's impossible to predict. Humira can help with the stiffness, which should improve your range of motion and quality of life in the present. It doesn't always make the pain go away because the pain is sometimes caused by physical damage that has already occurred. You'll just have to wait and see how it helps you. Give it some time. It can take 6 months or so for you to notice any improvement. There is also good evidence now that TNF drugs such as Humira significantly reduce progression of the disease. Hopefully no one will end up in a wheelchair as a result of AS in the future. So put that out of your mind. It's not helpful to think that way.

You are young and you have that going for you. So many new drugs are in development. The future is very bright indeed. If I might elaborate on the suggestion I made above: Stop imaging worst-case future scenarios and focus your energies on making lifestyle adjustments now that will make your personal future as good as it can be, no matter your medical prognosis. Focus on what you can control: Exercise, diet, getting good sleep, reducing stress in your life, etc. I think it's also a good idea at your age, when you still have time to change course, to think about what you do for a living and whether any changes might be necessary there so that you can continue working/participating for as long as you can. One way to reduce stress (at least in the United States) when you have a disease like ours is to, if possible, move into a job with secure benefits (e.g., health insurance, disability insurance, etc.). And if you, for example, have a physically demanding job, consider whether you'll be able to continue doing that long term. Don't wait until mid-life to think about these things.

Hope this helps.

Originally Posted by SouthernMoss
Excellent advice from Winston.

As to Humira side effects, the scary ones are rare. Very rare. When I started taking Humira, my rationale was that the odds of damage from untreated (or under-treated) SpA are much higher than the odds that Humira will cause cancer or some other serious condition. And my rheumatologist monitors me very closely with office visits and blood work every 3 months.So if something did go wrong, it would be caught and dealt with very quickly.

My biggest piece of advice: stop googling. And when you do google (because we know you will wink ), limit yourself to reputable medical sources. Avoid the horror stories where everyone tries to sound like their case is worse than anyone else's. Avoid the images of little old men all hunched over. Stressing out about things that may not ever happen is counterproductive.

Keep us posted on your progress.


Thank you all for the support. Yeah I have googled a lot! Read so many clinical studies and personal testimonies that got me really depressed and down about life. I just hope I caught this on time to be fully functioning for a long time and newer meds to help all of us even more. I'm actually self-employed and so I can work at my own speed and discretion. I have very good health insurance and so that's helped a lot. They approved for me to use Humira right away.

Only thing I need to change is to be more active and exercise ive been really lazy about that over the years. I am practicing better posture and physical therapy techniques. Been reading the keystone approach in order to change my diet and use their supplements. I have read a lot of good things on helminthic therapy for control of axial PsA. Since we have similar gutbiome to people who have IBD it can help us too....

They are also doing FMT clinical trail in denmark treating PsA and axial PsA I think this may show promise as a new treatment alternative. Everything seems to be veering towards the gut as one of the main sources as to why we develop paxial SpA and AS to a degree of course genetic markers need to be there. Ironically for me I am HLBA 27 negative! But, I am indian so there could be an association of hlba 27 negative to produce a disease like this from what ive read too.

Iv'e read way too much lol. Sorry to go on a tangent I appreciate both of your responses Winston and Southernmoss. I'm going to try and relax not dwell on this too much and make improvements to my life and hopefully everything will be just fine.

Re: Recently got diagnosed with Axial SpA very worried [Re: Caturday] #282551
02/03/19 04:47 PM
02/03/19 04:47 PM
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Hi Caturday,

Welcome to the forum! I can only agree with SouthernMoss, stick to a few sources and don't google too much. There's a wealth of knowledge and experience on this forum alone. I like to go through older posts on this forum too, to see how other patients are dealing with symptoms, what kind of symptoms and diseases might be related, etc.

Did you also get a prescription for an NSAID, besides the approval for Humira? I've heard it might take a while for a biologic to have effect, so getting an NSAID in the meantime to could help with pain and stiffness until the Humira kicks in.


Medication: Arcoxia 60mg as needed
No official dx yet (no visible fusion of SI joints on x-rays)
Re: Recently got diagnosed with Axial SpA very worried [Re: Caturday] #282609
02/11/19 03:24 PM
02/11/19 03:24 PM
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Boston, MA
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Miguelito Online
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Humira has been a godsend for me. For me, any possible side-effects have been outweighed by the improvement in my quality of life.

Everyone has to make their own decision.


1981 - Hip/knee problems led to early, correct AS diagnosis (amazingly!).
1990's -Doctor mistakenly diagnosed me with Psoriatic Arthritis. Bad doctor!
2000's - Increasingly problematic "sciatica". Guffaw.
2011 - Diagnosed with end-stage right hip arthritis.
2012 - Right HSR.
2013 - Partially torn Achilles.
2014 - Left HSR.
2016 - Re-diagnosis of AS, Prescribed Humira. Achilles surgery followed by subsequent re-tear.
2018 (Now). Doing pretty good. Humira working, Achilles finally better.
Re: Recently got diagnosed with Axial SpA very worried [Re: Caturday] #282614
02/11/19 10:59 PM
02/11/19 10:59 PM
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I had a mild version and did not get diagosed for over 25 years. Yes, I have some damage that can't be repaired but I have been in a sweet remission for years now.

Hurmia was my first miracle. Because I went so many years untreated, it stopped working after less than a year. Piling on MTX etc. I went to other meds, they all worked fabulous until they turned to water. Again, doctor stated it is because I went so many years without treatment. I always urge early aggressive treatment as is recommended.

I am on a "off label" med, there are now new meds I could try but why, when this is working.

Good luck. Hurmia is great. I much prefer the shots over IV


Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.
Re: Recently got diagnosed with Axial SpA very worried [Re: Caturday] #282618
02/12/19 02:23 AM
02/12/19 02:23 AM
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Miguelito Online
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Caturday,

Just wanted to point out that I have had AS for at least 37 years. I was on Indomethacin (or variants) for 35 years, and that stuff is supposed to rip up your innards. I'm sure others have been on it for longer, but I have never heard of one. Yes, I suffered from incredible amounts of unnecessary pain due to mis-diagnoses in the intervening years, a bad doctor, etc. But when I was 40 things came to a head. I was getting older, the problems were getting worse due to cumulative damage. I was forced (thru pain, disability) to become my own advocate. Hips replaced, got on a biologic (Humira), and life is much better. I have small children so need to take care of myself to be the best dad I can be. Sometimes I am not, and I rightly or wrongly blame that on my health (to myself).

Don't wait for some possible better med down the road. Do what you can to arrest the damage now. I compensate for much of the damage I suffered by unrelenting strength training (muscle mass is like an insurance policy with this disease), and a force of will that can be frightening, and has made me a little too hard, in general. But I am also very lucky in that I have job that allows me to suck for long periods of time; most people don't have that luxury. Do what you can now, and hope for better medicines down the road.

Wishing you the best,

Mike

Wow! They won't let me type $-h-I-t?

Last edited by Miguelito; 02/12/19 02:24 AM.

1981 - Hip/knee problems led to early, correct AS diagnosis (amazingly!).
1990's -Doctor mistakenly diagnosed me with Psoriatic Arthritis. Bad doctor!
2000's - Increasingly problematic "sciatica". Guffaw.
2011 - Diagnosed with end-stage right hip arthritis.
2012 - Right HSR.
2013 - Partially torn Achilles.
2014 - Left HSR.
2016 - Re-diagnosis of AS, Prescribed Humira. Achilles surgery followed by subsequent re-tear.
2018 (Now). Doing pretty good. Humira working, Achilles finally better.

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