I only got diagnosed in July this year with ankylosing spondylitis but pain bad on and of since April 2021, I live in the uk
Physio kept saiying it’s fibromyalgia, I said it wasn’t but cutting a long story short I got diagnosed with ankylosing spondylitis at age of 63 I have had fibromyalgia and ME for 13 years and osteoporosis since 2012 but I was told something triggered it and had it longer.
I am allergic to most medications, affect my stomach so rheum said this one, only side effects chest infections and UTI but nothing major.
I have IBS (D) and C since gallbladder out
I know it’s a strong drug but I haven’t been told much else, I take vitamins, but in family cancer and stroke and heart disease in father and mother ( mother cancer dead age 51 )
Father 60 ( heart attack and drowned abroad) sister died of (Vasculitis in 2019 age 55 )and my cousin has Leukemia she is 56.
Anything I need to tell rheum as she knows all this but just asking for piece of mind
Thank you
Adalimumab - Amjevita for ankylosing spondylitis?
Question posted by Julie59 on 20 Oct 2022
Last updated on 21 April 2025 (4 weeks ago) by hgmommie
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3 Answers
I was diagnosed with spondyloarthropathy in Dec 21. I do have the HLA-B27 gene. X-rays and MRI showed sacroilitis. I was also diagnosed with fibromyalgia and colitis. I am around your age - 61. I started taking Amjevita about a year ago. I haven’t noticed any reactions. It works well so far. It helps with my back/shoulder pain and my colitis. Hope this helps.
I am not sure I can help you regarding your medication. I have fibromyalgia but the reason I am interested in how they treat AS is my 16 yr old grandson has the HLAB27 (I think) gene and even though when we finally saw the hematologist he said a lot of people have this gene so this is nothing to worry about. Even when I said to him that he was complaining of aching joints and fatigue amongst other conditions the hematologist was still not interested. It was interesting though why we were seeing him (hematologists concern) though as it was to do with his low white blood cell count and he brushed that off too. I have read recently about fibromyalgia having the commonality of white blood cell abnormalities (cytolokriptan??? ) or some such thing to do with proteins in the blood.
What I could suggest knowing these things is perhaps your rheumatologist can do a blood test to determine if you have that gene as my take on it is, it is always present in AS sufferers and yes it starts in your mid to late teens. I do not have the gene and at this stage the determination of his(my grandson) causes of pain and other symptoms will depend on an orthopedic surgeon determining if he has Marfan's syndrome. If we were to look at genetics and what you say of your family history and what I know of mine, even though I am in Australia my descendancy is from various parts of Europe, is that scientific research has indicated a definite tendency or susceptibility to various conditions given their genetic make up so don't lose sight of that.
All the best in your endeavors and I really do feel for you especially the pain if you definitely have AS. I would be accepting whatever pain relief help you can get (even chronic pain management specialist or group referral) Living with less pain is the kindness we need for ourselves to be a better functioning person.
Hello
Oh I am so sorry he is it’s terrible as yes I know it starts teens and twenties.
Yes the HLAB27 gene I don’t have it but I was told I don’t have to have it to have AS and that was the diagnoses as I had two MRI scans to confirm and I have osteoporosis but that started in 2012.
I was anoxria, I had a very bad childhood so maybe it all stems from that I don’t know. By having two scans they got the confirmation.
I have never seen a hematologist should I ask to see one, I have only seen rheumatologist and not even a consultant I just spoke with her.
I think I might be a rare case having it at my age but i definitely have.
What is Marfan's syndrome.?
Can you take him to see a rheumatologist?
I have normal white blood cells, I was told a few days that I had old AS not sure what they means but I think it must be there a long time actually I should ask.
Yes my descendancy is European as well.
I will look into that thank you.
Thank you and I hope your grandson finds the treatment to help.
Take care.
Hi could anyone help me with my question? I have had no answers.
Thank you
Jan
Related topics
ankylosing spondylitis, pain, psoriatic arthritis, fibromyalgia, adalimumab, spondyloarthritis, diagnosis, amjevita
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