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Re: Spondylitis Symptoms - List Your Symptoms Here
fall_of_moonbeams #284410 08/21/20 11:23 PM
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I have arms pain and tingles with numbness in the fingers, neck pain, SI joint pain and lumbar pain. My achilles is striating to get very stiff and sore too

https://www.youtube.com/channel/UCApkyc8seTyi09VyGe_uxmg/

Re: Spondylitis Symptoms - List Your Symptoms Here
fall_of_moonbeams #284416 08/21/20 11:51 PM
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thanks for sharing. also enjoyed seeding some of your videos on youtube :-)


AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.
Re: Spondylitis Symptoms - List Your Symptoms Here
fall_of_moonbeams #284624 01/26/21 03:30 AM
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Shoulder
lower back
some uveitis
Fairly mild compared to some others here. I do research- and find out stuff. Now rely on Low Dose Naltrexone, Oregano Oil, and Curcumin/Quercetin Combo
- which is getting a lot of attention lately. I wrote about it here https://forums.spondylitis.org/ubbthreads.php?ubb=showflat&Number=284622#Post284622

Re: Spondylitis Symptoms - List Your Symptoms Here
fall_of_moonbeams #284649 02/06/21 09:39 PM
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Recently my meds failed for 1 month, so I could determine very precisely the symptoms.
Still not diagnosed as PsA or AS
MRI showed SI joint effusion, capsulitis, enthesitis and bone edema, corner sign on 3 thoracic vertebrae
HLAB27 neg, nothing obvious in blood, 2x CRP was slightly higher than normal range and ANA is positive at 1:80 and 1:160 another time.

Symptoms:
1.) Fatigue
2.) Brain fog
3.) Pain and stiffness in SI joints
4.) Pain and stiffness in spine (mainly thoracic and L4/L5)
5.) Tendons on right hand have enthesitis so can't fully open hand
6.) Pain in base-of-thumb joints
7.) Psoriasis on scalp and in ear canals.
8.) Itchy eyes
9.) Joints are getting stiff and cracking more often
10.) Some vertigo (not sure if this is related)

Stiffness and pain is all day not just morning, although I do sports mostly in the afternoon as I feel better then.

Symptoms improve with:
1.) Celebrex
2.) Cosentyx (better than Humira or Enbrel)
3.) coffee
4.) hot shower
4.) exercise

Re: Spondylitis Symptoms - List Your Symptoms Here
fall_of_moonbeams #284730 04/24/21 11:33 PM
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Hi there. Has anybody had feet/foot issues? I recently had an MRI and XRay which indicates joint damage resulting in a bunion, my sesamoid bones have shifted to the right and need either shifted back to where they are suppose to be or removed. I need a bone fusion which will consist of a plate and screw and I will no longer be able to move my joint in my big toe. I am in a lot of pain with this. Also, has anybody had issues with inguinal or hiatal hernias?

- I think my worst symptom lately has been fatigue. It's been rough.
- Tendonitis in my elbow that will not get better, even with PT and dry needling.
- Recent chest XRay indicates slight curvature of lower spine to the right.
- Neck pain is extremely tough.
- Never feel like I get enough sleep.
- Most all of my joints hurt, about daily.

* I keep active. I go to the gym, walk, hike, bike both road and mountain bike, Kayak and normally do something daily, except for the days I just can't function. I feel so much better by being active.
* I am 49, female, diagnosed 7 years ago with AS and Fibro and Lupus w/in the past 3 years.
* I was on Humira for 5 years, and currently on Cosentyx for the past 2, but it has stopped working so changing w/in the next month. I also take Gabapentin, Tzanadine, Celebrex and vitamins.

** What injection has worked best for you?

Thank you!
Lori

Re: Spondylitis Symptoms - List Your Symptoms Here
Zulu #284731 04/24/21 11:35 PM
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HI there. Do you take Cosentyx once a month or 1 injection every other week. Cosentyx worked well for me @ first, but seems to not be working. I am miserable around 7 to 10 days prior to my next monthly injections. For me Humira worked much better until it stopped.

Re: Spondylitis Symptoms - List Your Symptoms Here
BeStrong #284736 04/25/21 10:41 AM
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Cosentyx stopped working well for me after 6 months (1 per month), so I switched to Taltz and it's going better.
There should be 1-2 new anti IL-17 antibodies from other companies soon too.

Re: Spondylitis Symptoms - List Your Symptoms Here
Zulu #284737 04/25/21 04:08 PM
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Thank you! I looked @ Taltz and Cimzia. I think the weekly injections such as Humira works best for me.

Re: Spondylitis Symptoms - List Your Symptoms Here
fall_of_moonbeams #284739 04/26/21 08:27 AM
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Taltz and Cosentyx are the only 2 anti IL-17 antibodies available right now, so I would recommend you try Taltz rather than go back to anti-TNFs.
anti IL-17 seems to treat fatigue better and has less side effects.
Don't worry too much about weekly vs. monthly injections.

Re: Spondylitis Symptoms - List Your Symptoms Here
fall_of_moonbeams #284740 04/26/21 04:22 PM
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Hope these issues subside soon.

Foot issues are a big problem for some. If it were me, I'd talk with a rheumatologist that is experienced with peripheral spondyloarthritis.

I've met some people that their initial big AS problem was foot pain. Mac talks about his issue in this interview https://spondylitis.org/patient-story/mac-reynolds/

seems like you have several options for biologics. you had some success with TNF. if things got worse while on IL17, is that the class that you want to stay with?

I thought if a TNF worked initially, but then started to be less effective, they switch to another TNF before leaving that class. https://spondylitis.org/wp-content/uploads/2020/12/SAA_Pocket_Guide_Update_WEB.pdf

hope this helps.


AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.
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