New DX of AS after years of issues...
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Hi All, I tested positive for HLA-B27 after an MRI showed inflammation in my SI joints. I'm 48 and have had recurring back pain for about 15 years. I've usually been able to improve my symptoms with yoga, ibuprofen and the occasional muscle relaxer. For the last 7-8 months the pain areas are mid back, hips, buttocks and legs. Ive had numbness and tingling in both feet off and on. My insurance company denied MRIs twice, even after 8-weeks of PT wasn't helpful. Finally had the MRI last month and that led to blood tests. So now I'm waiting for my appt with the rheumatologist. My eyes are affected - I had no idea the redness and irritation Ive had recently could be tied to my back and hip pain. Clearly my doctor didn't either because he's had me using drops for dry eyes. I see a GI for stomach issues too. All of these seemingly unconnected symptoms and no one put the pieces together until I finally got the MRI. My fear is I lost years of treatment time and treating this will be harder now. Any advice before my first appt? I'm finding it difficult to do the yoga that has been helpful before. Walking can be helpful on a good day, but sometimes makes the pain worse. The worst part for me is my 1.5 hour commute. Car time is not helpful, but a lot of walking to and from the train - especially in cold weather - has been hard too. Sorry...venting!
0 likes, 7 replies
beat_AS teri76755
Posted
HI its very important to keep warm in cold weather use thermals if neccessary. Your rheumatologist will advise you what to do. Take care of your diet . dont smoke and drink.
teri76755 beat_AS
Posted
That's why I opt to drive to work rather than train. The cold wreaks havoc on my symptoms. Thank you!
beat_AS teri76755
Posted
btw i do use curcumin capsules to bring down the inflamation. my pain got worse and i was put on methotrexate weekly injection and later biologic remicaide which helped me immensely and i am back to normal !!
teri76755 beat_AS
Posted
I saw the rheumatologist last week and he ordered a few back xrays and drew blood to check for infection. He said its likely AS given symptoms and positive HLA-B27, but response to treatment would confirm. He mentioned the medications available. I'm really concerned about side effects. 7 out of 10 days my pain can be managed with ibuprofen and Tylenol, so I'm thinking I should wait. If the meds slow progression though, maybe now is the time.
beat_AS teri76755
Posted
meds do help but how long can you or should take them. i read testimonies of people who have gone vegan eat as much as raw vegetables and fruits avoid meat and dairy and they are off meds since a few years. its difficult to turn vegan outright however small changes is always a start and exercising is a must
teri76755 beat_AS
Posted
May I ask how long you've been taking Remicade and if it helped immediately? I think I may have to get off the anti-inflammatory meds, they aren't doing my stomach any favors. I usually take ibuprofen and tylenol in rotation, but today I took Alleve. Didn't touch the pain AND it killed my stomach. I worry about potential side effects of the biologics, but I know OTC meds aren't risk free.
beat_AS teri76755
Posted
3 years