Well guys, I have the worst pain ever. Sacroilitis is excruciating. Also, my entire spine is a mess. Arthritis everywhere.Herniated discs. Degenerative disc disease The list goes on. My question is, does anyone else get Sacroilitis? Am I in a big 2 week flare or what? My Rheumatologist doesn’t think so.I hired a new one. I have to wait until april to see her. I have an appointment next week at pain management dr for flouro guided steroid injections into SI joints. Why didn’t my Rheumatologist explain rhis to me. Psoriatic arthritis is so confusing. Also, has anyone tested positive for the HLA-B27 antigen? Apparently mine is positive.
.
Yes it’s a big part of PsA inflammation sadly. It can resolve provided your PsA meds are working optimally. What PsA meds are you on?
The HLA-B27 is just a gene test. You can be positive for it and never get any autoimmune inflammatory disease at or you can be negative for it like me but still get PsA. It’s more important for AS patients as the majority of people with AS are positve for the gene.
Hi Poo, I am currently on cimzia injections once a month. I also have prednisone for a flare up. I have tried numerous others before landing on cimzia.
Fingers crossed it’s a flare and it will quiet down soon. If you have prednisone and some guidelines for using it for a flare. That’s a reasonable option. But you can play it both ways and make an appointment with either your rheumatologist or an orthopedist to get things checked out. There’s certainly targeted injections and other therapies that could be an option. You likely would need to wait quite a few weeks to get an appointment so it might be worthwhile to make the calls now.
I’ve had run of the mill back problems with degenerative discs and whatnot. It might also be worthwhile to get a prescription for physical therapy from your doctor
Thanks for the response. I get more information on this site then I do from my rheumy. It’s quite frustrating. I see a spinal Dr on Monday. Im hoping he can help. I have an appointment with a pain management dr on Wednesday. Hopefully. I will have a better plan if or when this happens again. I appreciate you help.
This has been a nightmare. 1st epidural injection in my cervical spine. Now, I have a severe headache. Im getting an EMG to see if this nerve damage is permanent. They are now talking spinal surgery. I said, as a last resort. Im trying to get back on my feet. My spine is a mess. The rheumatologist thinks i may have Ankylosing spondylitis. I tested positive for the HLA-B27 gene/ antigen. Not sure, my brain isn’t working very well. Im 51 and feel like I have dementia . I walk like im crippled. This has been a rough month. Thanks for listening. Im struggling
Please know that you have many more “ears” hearing you and understanding than the responses you might get. Many on this forum have been nodding their heads as they too have experienced or are experiencing high levels of pain. With all that you are going through, from pain to meds and normal anxiety, I’d say that brain fog or feelings of dementia are pretty normal. It sounds like you are getting the necessary treatment needed and we all hope and pray that you see relief and better days ahead. One of my best pain meds is still distraction… Reading a book, listening to a podcast, whatever to give your mind a bit of relief from all that is yelling at you.
Thank you. This was my first major flare ever. I have a wonderful support system that understands our invisible illness. I barely remember the month of March . I’m turning rhe corner and staying positive!!
1 Like
Well guys, im still sick over here. Im still trying to get a definitive answer. I see a neurosurgeon on 4/9. I hope he can help me with this spine and brain. I just found out that my thoracic spine has a lot going on too. I had a scoliosis xray that the neurosurgeon ordered. The next day the office called and said the neurosurgeon wants to see you. Im a little nervous. Im not sure what he saw on that xray. I do remember having back pain when i was 28 and I already had osteophytes on my thoracic spine back then. Im having terrible syernum and rib pain at the moment. It hurts to breath. I am back on prednisone,Muscle relaxers, anxiety meds, and everything else I take these days to try to live a good qualityof life!! .
I saw my regular rheumatologist today. He has been following my case as the test results start coming back. He said, i could have MS or drug induced Lupus from the Cimzia. I am hoping it’s the drug induced lupus. The dr said, the symptoms will go away when the cimzia is out of my system. If it’s that, i can not take TNF inhibitors anymore.
This just keeps getting worse. I have my spine under control. I got the 2nd injection today into the left SI joint. All my tests are coming back negative. I guess its from the psoriatic arthritis. This is so overwhelming. I have one more test that the dr is waiting for the results. I just left my primary and she said your inflammatory markers aren’t elevated. I said they are never super high, but that it does not correlate to the pain I am in. Nobody understands! This is so frustrating. I could hear the drs outside my door discussing my case. It wasn’t very nice. Im tured if explaining psoriatic arthritis to these Drs.
PsA is classed as seronegative for inflammation showing up in blood tests. It’s an anomally of the disease and is HUGELY known about in PsA rheumy circles as it’s a defining diagnostic element of PsA. There are no tests available to show it’s PsA either. So negative tests for other conditions merely point towards PsA. Have you been all over your country’s Psoraisis and PsA organisation? There will loads of evidence in there to show to whatever doctors you’re seeing about how PsA is seronegative, why it hides on scans and loads more besides.
Look up Dafna Gladman originally operating in Toronto. She spearheaded how to assess PsA. She has books and a zillion published articles on the difficulties of PsA in places like the Americal College of Rheumatology and even better organisations too… She’s also worldwide renowned in all things PsA. From what you’re saying the doctors you’re seeing are running down needless rabbit holes that aren’t that sensible. Hope this helps.
My GP doctor always looks at me after a new set of blood results are in with a smile, “well that’s good, your inflammation markers are all very low”. Sigh. And I explain it again. Many doctors have tunnel vision and slip PsA into their experience with RA. It is a painful reality but hopefully before we are pushing up daisies, new doctors will get it right. Or, get the T-Shirt that says, “OUCH! I’m Seronegative”
1 Like
Poo, I have an appointment with a Rheumatologist at university of Pennsylvania Hospital in Oct. There’s over a 6 month wait. I hope he understands psoriatic arthritis. I couldn’t believe my primary said your inflammatory markers are low.
She can see how sick I have been lately. I just feel deflated once again. I am so tired of explaining it. Im upset with .y original rheumatologist for not recognizing this was a huge psoriatic arthritis flare. I have so much money on unnecessary tests. I am beyond frustrated. If say no to their test, they label as noncompliant. Im already labeled as Anxiety because i was in so much pain from the sacroilitis and all the nerve pain from the herniated discs. Amos, I really need that shirt for the next drs appointment
2 Likes
So, my primary Dr called me today and told me I am not fit for duty. I can not go back to being a Respiratory Therapist. I am so bummed. This is a lot to handle at the moment. Im just venting to you guys because you understand.
Hello, im just giving an update. I am finally getting my left SI joint fused September 19th. I will get the right SI joint fused in October. The procedure is called Tilink by a company called Surgentec. I am praying it works. I will keep you posted on how the recovery goes and the results. This forum is the best!
1 Like
I wish you the best of luck. Hopefully it gives you the relief you need
Thanks Stoney. The surgeon keeps telling me it will help. We shall see.
1 Like
Surgery is kind of like a root canal…you don’t want it but really need it so you just do it. Hope is a powerful thing that gets us through these things…we are all hoping for the best for you, stay optimistic, the surgery could very well give tremendous relief and a better quality of life. Thanks for sharing your journey with us…it is all helpful to the many others checking in for answers and direction. I have gained so much from the experiences of others sharing here on Living with PsA. Praying for a quick and uncomplicated recovery!