Diagnosis in Question
Hi everyone,
I am wondering if anyone else has ever been in this situation. My diagnosis has kept evolving over the past year due to lots of inconclusive or negative evidence. It started as Psoriatic Arthritis due to psoriasis (hands & scalp) and pain mainly impacting hip/pelvic region (SI pain is particularly bad as is pain along top of iliac crest, along side of hips, and around ischium). Pelvic MRI came back negative for evidence of inflammation though. Lumbar MRI found scoliosis & two herniated disks. Cervical MRI found at least one herniated disk, I believe. None of these MRIs conclusively showed the type of inflammation they were looking for, so based on symptoms and responses to treatment approaches, I was diagnosed with non-radiographic axial spondyloarthritis & put on Simponi to see how I would respond. After six months I notice a massive difference, but still struggle at the end of my month between injections, and still struggle with driving and fatigue, especially on bad weather days. So I went to get a second opinion as my rheumatologist said he basically couldn’t do anything about those persistent symptoms. I was hoping to get put on a more frequent dosing schedule or maybe discuss additional treatment options to help with some persistent issues keeping me from being able to drive and manage daily activities consistently. Well, I found out that I may in fact have trouble renewing my Simponi based on limited conclusive evidence to support my diagnosis, depending on what my next round of X-rays & next pelvic MRI show. I’m stopping Simponi for now if I can handle the pain long enough to make it to my MRI, which hasn’t been scheduled yet. Obviously if I don’t have spondylitis that is a good thing, and if I was experiencing a placebo effect then that is embarrassing but ultimately means I don’t need an immunosuppressant. But my fear of course is that I DO have the disease in the early stages and it will just keep getting worse when I thought things were finally getting better. Has this happened to anyone else here or anyone you know? Thank you!
Hi,
Thanks for sharing this.
I hope you are keeping well.
Yes I can relate to what you describe, as I am radiographic negative for my AxSpa, I don't have the genetic marker for AS and I have quite few peripheral symptoms...
What has made a strong case for me was that the inflammation markers were elevated in my blood, and the fact that my first flares were typical of AS/AxSpa.
So I was diagnosed with non radiographic AxSpa and put on biologics, which after switching once, I am now taking a medication that works for me.
I hear you about the confusion when diagnosis is changing. However, for different forms of arthritis some treatments are the same. When I changed rheumatologist a couple of years ago, the new specialist started to discuss my diagnosis and told me I may have PsA. Well, I did not really want to discuss the matter and go down the route of changing medication, because I have something which works for me, whatever the specific diagnosis I may have in the edn. This medication is slowing down the progression of the disease, and avoid me to have massing flares, so that's good enough for me!
We also have to be careful about the fact that AxSpa/AS may manifest differently from one person to the next, and there are differences between gender too. So as a woman, I may have more peripheral manifestations of AxSpa compared to a man, without necessarily having PsA instead of AxSpa.
Of course, it's important to have the right diagnosis, I would also say that having more than one opinion over this might be useful . This is good that you went for a second opinion for your condition. You might still have AxSpa without the progression to the stage of AS. That would make you a strong case to take biologics in fact, if this is what you wanted to do, in order to limit the progression and the damage to your joints.
I just want to add that what you know about your condition and your symptoms is very important too. You are the person living with it and this is crucial information when it comes to deciding which medication to take.
I hope this helps.
Take care,
Julie.Thank you so much for sharing! If I am having the same problems next winter, I think I will ask if I am able to try cortisone injections in my SI & hip joints because those get very stiff when the temperature dips below freezing. I’d like to be able to stay active outdoors through the winter, but the winter weather here in the Great Lakes region can be punishing even for fully-abled people. I am also going to speak with an infectious disease specialist because I believe I had COVID and also a tick bite 3 and 6 months (respectively) before my SpA symptoms became fully debilitating, and would like to see if we can rule out Lyme or Long Covid.
I hope they can rule out with what is going on with your symptoms and can come up with a treatment plan that can help get you feeling better soon. Sending you some positive vibes your way, Nicky (Team member)
I often think I have something else going on besides my diagnosis of PsA. The rheumatologist has ruled out RA because all of those tests and hallmarks were negative. I'm possibly under the AS umbrella as opposed to PsA, but the rheumatologist says the treatment is the same. I've tried several biologics, and I keep coming back to Enbrel. Nothing has worked really well, even after they added MTX. I get cortisone injections in my SI joints and Facet joints a few times a year, but I think I'm as good as I'm going to get. Unless there is something still undiscovered going on...
