Please help seronegative inflammatory arthritis

Oh geez that’s terrible. My old man’s not into it but I’d like to try to see if it’s okay. lol. Seriously though I know, some days my clothes hurt, I don’t know why but I use to only like jeans that fit snug, now I don’t even like elastic. I also have neuropathy so I take a lot of gabapentin and even so I can frequently stil feel the bites-burn-itch under my skin and seems to travel all over my body a lot.

Thank you for explaining. I am wondering if we are planning the right move, to be honest.

Well that's a different thread, a whole different forum I guess, but I wish you luck with the move and if you can go private with the arthritis you'll be OK. It's £250-300 for a first appointment, less for follow ups. Blood tests can rack it up. If your planning to move to the Manchester area I thoroughly recommend Hector Chinoy.

Many of us started as seronegative RA. That alone shouldn’t prevent dmard treatment.

I'm heartbroken for you. I'm a former Brit living in the US so I remember the system well. Five years ago, my sister lost the vision in her right eye waiting for a surgery date to repair her detached retina. They confirmed a detached retina but couldn't help her as there wasn't an eye specialist on call that night and sent her home from A&E and told her to follow up with her GP . . . who then referred her as an emergency A WEEK later with an eye specialist . . . who then put her down on the waiting list for a surgery date . . . but by that point it was too late. She's officially blind in one eye. The system is utterly broken.

Your story sounds much like mine. Severe back pain, which then progressed to the elbow, neck, shoulders, and ribs. Enthesitis was seen on ultrasound imaging when the pain in one of my shoulders was so bad I couldn't move it, which confirmed it for my doctor despite lacking the HLA-B27 gene. I am positive for RF, and my CRP and ESR jump above normal when I taper from steroids.

I have since been diagnosed with more of an overlap syndrome now which has aspects of other autoimmune diseases as I've subsequently developed muscle weakness/ataxia when I flare if I'm not suppressed enough when trying to taper from the steroids (this started after I had multiple bouts of Covid back to back, so something has changed) - but the primary diagnosis for insurance purposes is still seronegative axial spondyloarthritis. I started with Sulfasalazine, then added Methotrexate. When those weren't enough, my doctor approached me about adding biologics to what I was already taking. We've tried Humira, Enbrel, Orencia, Rituxan, Rinvoq, and Consentyx. None have been sufficient without a steroid as well, and the goal is always to get me off steroids. I'm now trying Remicade by infusion and will try again to taper the steroid in a few months to see if it works for me.

I do think you're on the right track asking for a DMARD - I just don't know how you circumvent the system there, which makes me really angry as you pay all your working life into "the system" so you have the care you need when you need it, not to be denied the care you desperately need when you need it. If you go privately and the private doctor diagnoses AxSpa - will the NHS not honor that private diagnosis and start treatment or would you have to start treatment privately at that point?

My doctor is Chinese and believes not just in pushing drugs; she believes in an East/West philosophy of medical intervention coupled with whole body/mind treatment, so I'll share what I've learned from her over the years in the hopes that maybe there's something can help you meanwhile:

1. Diet: she asked me first to try the "Paleo" diet which I found too restrictive, so we compromised with a "Mediterranean" diet - I gave up all processed foods, refined sugars and seed oils. The goal is to lower inflammation. She asked me to try A2 milk and A2 milk products if I could find them (I did find A2 ricotta and one or two A2 cheeses). I focused on whole, unprocessed foods such as fruits, vegetables, lean meats, eggs, fish, nuts, seeds, and used honey and maple syrup as sweeteners. In the beginning, I picked one or two things every couple of weeks to work on until I had it down. I started with swapping out my pantry oils to olive oil (dressings/drizzling over grilled fish, etc.) and avocado oil (sauteing/pan frying), switched to the A2 milk, and so on. My sister said she thinks she's seen the brand A2 there, so hopefully it's in one of the markets by you.

She also asked me to avoid nightshades - tomatoes, peppers, aubergines/eggplant, potatoes, okra, chile, curry, paprika - as they contain compounds such as alkaloids that can trigger inflammation in some who may be sensitive. You could try a month without them and see if you a notice any difference. I didn't notice *much* of a difference, so I do eat them, but I try not to eat them all together in one meal - for example, I'd avoid something like ratatouille that has tomatoes, peppers AND aubergines!

2. Inflammation Supplements: She asked me to add a good quality curcumin supplement (turmeric has been associated with lowering inflammation), and an Omega 3 and Vitamin D supplement (also helpful in regulating inflammation and chronic pain). I had to stop the curcumin after I developed blood clots (again, thank you Covid . . . ) as you can't take it with blood thinners. How much Vitamin D would depend on your levels - have you had a Vit D. level drawn recently? My first level drawn was a 7 - which was way below normal. Normal for a woman of my age would be 30-50. Low Vitamin D is implicated in autoimmune disease. I now take a prescription Vit. D of 50,000 units a week and after 6 years am still only "just" within range at 34, so if your doctor hasn't had a level drawn for your perhaps that's something you can request. I thought this might be helpful in understanding the connection between Vit. D and autoimmunity:
https://www.medicalnewstoday.com/articles/early-life-vitamin-d-deficiency-may-lead-to-autoimmune-conditions
3. Managing Stress: She asked me to try Tai-Chi, Yoga or Aquacise as all are low impact on the joints and wonderful for managing stress, but for the classes that worked with my schedule, everyone in the classes was 75-90 years old . . . I was in my mid-50's at the time and really felt out of place, lol. So she suggested swimming and that worked out GREAT! I started slow at 15 minutes and eventually built up to 45 minutes. I am the slowest swimmer in the lanes. The 10 year olds zip by me, but it isn't about being fast, it's simply about doing something that allows my mind to wander aimlessly and lower stress (I also noticed decreased morning stiffness).

4. Mobility: I attend physio twice a week and starting November will begin Occupational Therapy as I've been having some difficulty with day to day things. Do you think they'll give you a script for physio at least? The stiffer and more painful my joints got, the less I could do - the less I could do, the stiffer and more painful it was to move. It was a vicious cycle. Maintaining mobility is so important to quality of life.

I hope this info might help. If there's any questions you might have, feel free to ask 🙂

Hoping you can find a way to get treatment fast.
Pauline

Interesting. My doctor says he gets zero-negative approval.

@cptrayes Hello 👋 thank you for replying. I’m seeing Dr Barr who diagnosed me with EDS but I’ve just had results in I have marrow fibrosis in multiple areas all over, meaning I’ve either got a marrow disorder (unlikely) or a result of advanced AS which is now causing bone marrow damage… I new it was serious. Praying 🙏 they admit this and put me on treatment I feel like I’m going to die! No exaggeration

@bswpb I may see him if Dr Barr doesn’t deliver as im deteriorating. He seems like a good rheumatologist though just didn’t have full picture in front of him at the time so gave me EDS diagnosis.

Please any help would be appreciated. I’m a mess. Dr Barr has ignored that I had a partial response to anti inflammatories he’s diagnosed me with EDS even with widespread fibrotic marrow change. I don’t have marrow disease this has been checked and from my research this can only be caused by either this or a chronic inflammatory condition

@sas2012
I can only suggest you go for a second opinion at a bigger hospital or more reputable rheumatology department. Good luck. And- well done for researching this and understanding it all, impressive.