6 years ago I was given diagnosis of Lupus after decade of pain and illness. I started taking Hydroxychloroquine which helped a little. I still take max dose.
Not seen consultant since 2019. Finally agreed to see me face to face next week.
I live with huge amount of pain, stiffness and inflammation.
I’ve had surgery to repair hip and knee. Steroids into SI joint in 2015.
I’ve tried ibuprofen, naproxen and etoricoxib.
Nothing really helps.
When I spoke to nurse recently she said I needed to start on AS treatment plan.
I was originally suspected to have AS back in 2014 due to SI inflammation on scans. But Dr disagreed and diagnosed lupus.
If Dr changes mind and diagnosis is AS, then what happens?
What treatment can I expect?
I’ve had so much physiotherapy hasn’t really helped with pain.
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Beau2016
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I have had RA for 25 years. This year they have diagnosed AS as well so I have changed from Benepali to Amgevita with my Methotrexate. Only had 2 doses of Amgevita so far so fingers crossed. Hope you get something that helps
My daughter has had AS for about 16 years now and she injects etanercept every week. It is rare she needs painkillers. Obviously what works for one may not work for another, but I'm sure your rheumy team will find the right treatment for you.
Hi Beau. I know your pain. I’ve had RA & AS since i was 21. (I’m 50 now). When i was first diagnosed. I was put on loads of steroids, sulphsalazine, indocide, painkillers. Took quite a while to be put on Infliximab infusions every 6 weeks. I’ve been on this brilliant drug for about 16 yrs. i can’t walk without it. I also have Iritis & Glaucoma in my eyes. This drug is meant to help everything. Hope you can get the right treatment. Makes such a difference. Good luck. X
I was diagnosed with AS 5yr ago at 51, but have had it since my mid 20s. The pains and flares were always put down to my career as a trauma nurse. By the time I was diagnosed I had fusion of the SI joints, ribs with no chest expansion and 3 slipped discs the one in my neck has calcified in the slipped position.I had already been on steroids for 4yr and under rheumatologist, so when a specialist 250 mile away diagnosed AS I was swiftly put on biologic. I’ve been on benepali for 5yr now, which helps with the stiffness and some of the pain. I still get a lot of pain, but that is due to the damage that has already occurred. You need to have an mri showing significant inflammation to qualify for biologics for AS, and have tried at least 2 nsaids. Females tend to get a lot of peripheral symptoms as well, and are often prescribed methotrexate. Hydroxychloroquine isn’t generally used but Sulphasalazine sometimes is, moth MTX and sulpha don’t really help spinal symptoms. If you haven’t had a recent mri they may want an up to date one, to help with applying for funding. Physio stretches are an essential part of treatment unfortunately and not optional. Nass is a brilliant website with lots of stretches and exercises appropriate for AS. They will probably do your bath scores and take measurements for your basmi score. Basdi looks at disease activity and basfi looks at function, you’ll find the tools online if your interested in scoring yourself. If your started on biologics before Ann structural damage has started you should get a good response to biologics. Feel free to get in touch if there’s anything else you want to know 🤗
Thank you for your lovely reply and sharing your story.
I've not had spinal MRI since 2015, which showed inflammation in SI joints, which I had steroid injections for, but they were horrendous, I'd never have them again. I had a reaction with soaring fevers and uncontrollable shaking, took me months to recover. Was supposed to prevent joint fusing. Honestly worse pain than giving birth. It scared me.
I've had Basdi score done loads of time, I'm not really sure the point of it, nothing changes, no one tells me what it means. Calculating it myself I'd score 7. Physio has also done the basmi, but again seems to be just for the sake of it.
I do my physio, yoga, swimming, walking which all keeps me moving, doesn't help with pain or feeling so ill though.
I think my main worry is that I will go to appointment next week and they'll do exactly as done before, measurements and assessments, send me for scans... then prescribe same NSAIDs I've had before which don't help much or give steroid injections which make it all worse.
If it wasn't for the fact that my mobility has got worse and I keep falling and injuring myself and that I'm worried I will have to stop driving due to pain at some point, I'd probably just not bother seeking help. I know that sounds absurdly negative.
Explain to them the impact this is having on your life, and that the nsaids aren’t working. If they consider a biologic then they will organise an mri to ensure you have active inflammation which is needed to meet the criteria. If they don’t do a basdi, explain you’ve scored yourself and got 7. It used to be you needed a score >4 to be allowed biologics. Do your inflammatory markers go up when you flare, if so it might be worth getting up to date bloods done prior to the appointment. Don’t let them palm you off with meds you’ve previously tried and that didn’t help. You should feel comfortable working with your rheumatologist, after all it’s a partnership not a dictatorship. Hope your appointment goes well 🤗
If you're diagnosed with AS there are biologics that are more likely to help than the medications you've been on for lupus. You have only been on some very mild treatments, if what you've mentioned is all you've been prescribed.
Most likely you'll be offered methotrexate as it's the cornerstone treatment for all forms of inflammatory arthritis. If that is ineffective or unsuitable, there are biologics, specifically TNF blockers, the names of which other posters have mentioned that are more effective in AS.
But honestly, there is not much use trying to anticipate what your rheumatologist will do. The simple answer is that she will prescribe some different medications, but most of the treatments that you've already had are appropriate for AS too. You have not been given the 'wrong' treatment as such.
What I read is that your rheum has treated you for fairly mild disease, that is, she hasn't understood the severity of your disease. That is the REAL problem.
You need to communicate to her that your disease is not under control and that you need the next step up in treatment. Let her know how your arthritis is affecting your life, explain things you can/can 't do, don't just talk in terms of pain. Better to say "I want to be able to walk to the shops again" or "I can no longer bend down and put on my own shoes"..whatever is relevant to you, but tell her the practical impact of your disease, so that she understands how it's affecting your life. She will then ramp up your treatment to get your inflammatory arthritis under control, whether that inflammatory arthritis is due to lupus or AS.
Thank you, this is such a helpful reply, full of good advice.
The impact on my life, my work, my relationships, my income is huge, I'd go into details but I just start crying every time I think about it.
I'd put off contacting consultant since I was refused an appointment in 2020, but I've had pneumonia recently which I'm sure is partly due to reduced chest expansion. I can't put up with it all anymore.I don't look ill, which is obviously a good thing but sometimes I think if I showed up looking how I feel maybe someone would help me.
You need to get back to them and ask what the treatment plan is now. It's not satisafactory to be left in limbo wondering what treatment is going to be advised. It does seem as if we have to be pressing for treatment and communication all the time in order to receive proper communication and treatment.
I get upset having to follow up all the time, so I don't, which has not helped me in the long run. Recently took 4 weeks and 6 phone calls, some of which I cried during for prescription of etoricoxib to reach me.
Physio asked my GP to increase amitriptyline back in October 21, still hasn't happened.
Write an email or letter to the practise manager at your surgery telling them they are missing important facts for your treatment. You deserve better. They will have to respond to your letter. 😊
If you’ve got inflammation in the sacroiliac joint and get diagnosed with AS ? MTX I was told by rheumatologist is of no use for spinal In my experience then biologics such as Imraldi will be tried .
I can't add too much more apart from having a backup pain killer that works well for me. I seldom use it and wouldn't recommend it for sustained use. It's called Celebrex or Celecoxib. Maybe you have already come across it? When you have a bad pain day and the meds your on for AS don't cut it, this comes in handy.
When I was diagnosed 12 years ago you had to have tried 2 non-biologic meds like Sulphasalazine or MTX and had no success with them before being offered biologics. I did my research and chose to ask for Enbrel/Etanercept. My rheumy was ok for me to choose. Don't think Enbrel is offered anymore for cost reasons its changed to Etanercept/Benepali now I think.
Hang in there, finding the right fit for meds is a process, but you will get there and find some relief.
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