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Wanted to Introduce Myself #282289
12/28/18 02:15 AM
12/28/18 02:15 AM
Joined: Dec 2018
Posts: 4
NEMO Missouri
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Bucksmom Offline OP
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Bucksmom  Offline OP
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Joined: Dec 2018
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NEMO Missouri
I have been looking for a forum dealing with AS since this past October and finally found this one. My Journey began in August, when persistent lower back and low cervical neck pain along with finger swelling and loss of dexterity in my hands prompted my DO to insist that I see a rheumatologist. I am no stranger to joint problems having delt with both Rheumatic fever and Lyme disease as an adult. What I wasn't expecting was the flood gate that was opened when the testing began. Osteoarthritis, osteoporosis, osteopenia, no big surprise. I'm 65 years old and a retired nurse. Serum negative RA, also no big surprise.But when the doctor handed me an order for more labs and the diagnosis was Ankylosing Spondylitis I was stunned.

I knew I had a bad back. Severe pain in L4 and L5, pain in my left SI joint and pain in my left knee. I also had recently developed pain in my neck at the cervical and thoracic junction that was painful to touch, hot and swollen. My husband also pointed out that I was developing a bit of a 'lump' there.

But I had never would have guessed AS in a million years and neither did my DO who had been working diligently to keep me as pain free as possible.

I have been on self injected Methotrexate since September 1st and it has been a blessing. Back pain is minimal and I've regained some mobility in my hands and fingers. In 10 days I get the results of the last battery of tests that my rheumy ordered for me back in November, including tests for gout which he is now suspecting is part of the problems with my hands. My biggest problem with the MTX has been weight loss due to loss of appetite. I've dropped almost 30 pounds so far.

Unfortunately the AS in my back and neck is the elephant in the room. I am an energetic and very active 65 year old who now is learning how to take care of myself all over again. No lifting over 25 pounds. Not easy since my chickens' feed comes in 50 pound bags but I'm learning to ask for help from my very supportive husband. I've suspended my dirt bike riding for the time being until the Prolia I just started has a chance to rebuild some of the damage in my spine and hips from osteoporosis.

But mainly I really am glad I found a group of people to talk to who can give me tips on how to deal with AS without giving into it. For me there is no giving in.Never give up and never surrender is my motto.


Man Plans, God Laughs.
Re: Wanted to Introduce Myself [Re: Bucksmom] #282292
12/28/18 02:44 PM
12/28/18 02:44 PM
Joined: Mar 2013
Posts: 2,109
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SouthernMoss Offline
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Welcome, Bucksmom. I'm glad you found us. That's a lot of diagnoses in such a short period of time, but it sounds like you are coping well.

I'm glad the MTX is helping. I assume you are taking folic acid to help with side effects. In addition to the folic acid, my rheumy suggested I take Vitamin A to help with any queasiness and dextromethorphan (in the form of Mucinex DM) to help with the fatigue and brain fog. I take 8,000 IU of Vitamin A daily, and I take one Mucinex DM at the same time as my MTX and another 12 hours later. Here's an article by rheumatologist Dr Jack Cush, who is an AS expert and researcher, where he discusses the management of MTX side effects and recommends the same protocol that my rheumy recommended: http://rheumnow.com/content/dsb-managing-methotrexate-toxicity

If the gout tests come back negative, you might consider psoriatic arthritis, which is in the same spondyloarthritis family with AS and can affect hands and feet, sometimes causing what is called "sausage digit". Although it's not as common for the arthritis to come before the psoriasis, it does happen sometimes. There is a lot of overlap between AS and PsA.

Keep us posted.


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: Wanted to Introduce Myself [Re: Bucksmom] #282301
12/29/18 04:08 PM
12/29/18 04:08 PM
Joined: Dec 2018
Posts: 4
NEMO Missouri
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Bucksmom Offline OP
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Bucksmom  Offline OP
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Joined: Dec 2018
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Thanks for the welcome @southermoss it is very much appreciated. I've been having problems logging onto the site plus suffering from the flu so I haven't been able to check back as often as I like.

My rheumy is keeping an eye out for psoriasis. So far I haven't had any external signs of the disease, thank goodness. Seems as though I have enough on my plate at the time. But the focus is finding out what is causing all my bone damage.

Thanks for the tip on the dextromethorphan. That one wasn't mentioned to me but I am on 3 ml of sub ling B and B complex per day, Vitamin C and a 1200 mg of calcium along with 5,000 iu of D3. I also take a vitamin E every day so adding an A would be no big deal.I'm vitamin poor now, LOL. I usually have brain fog for about 24 hours after my weekly injection then it eases. Became aware of the brain fog when I put my spare eyeglasses away and now can't remember where I put them..duh. My husband makes sure I don't make any decisions for 24 hours after taking my shot. So the tip about the dextromethorphan is much appreciated along with the link.

Right now I'm waiting for the flu symptoms to ease so I can take my shot again. I knew both the MTX and the Prolia would affect my immune system but I had no idea how dramatic that would be. Face masks are my fashion accessory from now on.


Man Plans, God Laughs.
Re: Wanted to Introduce Myself [Re: Bucksmom] #282346
01/07/19 06:22 PM
01/07/19 06:22 PM
Joined: Mar 2016
Posts: 26
Kris44 Offline
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Welcome! I am 46 years old and a nurse, on disability. I didn't expect AS at all either. I think especially since I was a nurse, I should have picked up on it, but I didn't. I honestly thought the pain was just a way of life, that I inherited a bad back, etc. I am currently on Cimzia and methotrexate. Both are helpful, but the side effects are not fun. Sometimes I think I'm just trading one bad thing for another. Again, welcome!


Female 45, ANA positive, HLA-B27 neg, MRI + sacro/iliac disease, DDD, psoriatic arthritis, coagulation defects, diskectomy
Symptoms since 15 y.o.
DX: 2 years ago AS
Past Meds: Sulfasalazine, Humira, Enbrel, Naproxyn, Cymbalta, Methotrexate, Mobic, Ibuprofen
Current Meds: Cimzia and continuing Prozac, Vit D, Folic Acid, Cyclobenzaprine

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