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Please help seronegative inflammatory arthritis
Really been through the mill. NHS are not accepting diagnosis and focussing on sclerosis only not active inflammation. Lower back pain since 20s got significantly worse 2017 - costochondritis and back spasms 2020 by 2023 moved to sternum ribs and T9 middle spine, tendon in right arm, wrist now it’s in every joint and I’m still left without treatment. Standard MRIs only no contrast given of spine and SI joints. The pain is so severe like I’ve been crystallised from the inside it’s severe tissue ripping agony. I’ve not worked in 3 years. They are still trying to say it’s something else when I know it’s what the private said axial and peripheral spondyloarthritis. No DMARD yet no one acknowledging the spread as I’m seronegative and hla5b7 negative. I’m seeing a private again in 2 weeks in hope they will help me
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@sas2012
Took me about 3 years to find a rheumatologist who took one look at my many problems and said “you have Sjogren’s, and I can help you”
I cried with relief!
And she certainly has. It’s not something she can cure but she started addressing my various symptoms one by one.
I’m getting various treatments including IV Ig for neurological problems.
Hang in there and don’t let them gaslight you. Some doctors just are not up to date with Sjogren’s.
Look up Smart Patients on line. You”ll find so much information and support.
Elizabeth Price is a doctor in the UK who I’ve heard is good.
Don’t give up and good luck.
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1 Reaction@sas2012
It took 3 or 4 years. Don’t give up and don’t let them gaslight you. It’s not all in your head!!!
There’s plenty of info about Sjogren’s Disease at the moment, they’re finally researching new medications.
Check out Smart Patients on line. You’ll find lots of information and support from fellow sufferers.
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2 ReactionsMy Rheumatologist diagnosed me with Inflammatory Arthritis and Osteoarthritis. I had an elevated SED rate but no other inflammatory markers. She waited for a year to diagnose it as seronegative RA. I started on Methotextrate then added Plaquenil. Then went to Enbrel injections. Now I aj on Orencia infusions with great success. I was on and off Prednisone (5-10 mg) for 4 years. I have been off for 4 months now. I really miss it but I know the side effects are not good. The OA is my worst complaint now I think.
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1 Reaction@ggarrett Helps me to hear you got relief. I have a reaction to steroids so I can’t take them unfortunately. I’ve no quality of life at all housebound and in a wheelchair, loosing hope of ever getting treatment
@sas2012
I hope you can find a Rheumatologist who thinks outside the box and can help you find some relief. I am very active and I think that helps a lot. I hope that you can get better and improve your quality of life. I throw everything I have at the symptoms. Epsom salts baths, jacuzzi, cold plunge, working with a trainer and PT, mostly vegetarian foods. But there are some days I just can't manage the pain and fatigue and I just rest.
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1 Reaction@marina88 I don’t think I have sjorgens though it’s spondyloarthritis but Enthesis dominant and late stage x
@sas2012
What has helped me the most is DMSO. It’s pretty much censored on AI. So I bought a book on Amazon: Healing with DMSO. Topically it helps my hands, the stinging stopped after repeated treatments. But taking it orally dramatically helped my knees and overall pain. I was doing great until I got up to 6 teaspoons and then I had a colitis flare. Once that’s gone, I’ll start it again and maybe stop at one or 2 teaspoons.
Also, the carnivore diet, which seemed crazy, has dramatically helped as well. Check out Dr Ken Berry on YouTube videos.
How much did you pay in Turkey? I’m afraid I’m no closer to getting treatment they say they can’t see inflammation on scans despite it being visible. I’m so exhausted….. if it wasn’t so severe I wouldn’t bother but I don’t think I’m going to get help at all. If you have any advice let me know