After a long over-due hiatus from this blog, I have decided that it is imperative to update everyone on my psoriatic arthritis and my overall health.
Since my last post, my arthritis has gotten incredibly better as well as my psoriasis. I am currently just taking CIMZIA for over a year now and also going for light therapy treatments 2x a week…and it seems to be doing the trick (at least for now). However, I am now currently suffering from a severe case of Papilledema (Swelling of both optic nerves behind my eyes) and Increased Intra-Cranial Pressure due to an increase of Cerebral Spinal Fluid.
My Ophthalmologist, Rheumatologist, and Neurologist all ran a series of tests over the last few months, blood work, nerve tests, MRI’s, Cat-Scans, and even a Spinal Tap. All revealed that my CSF levels were off the charts and my opening pressure of my spinal tap was 46, when it should just be 6. Who knew? What was really causing this? We all thought it was directly linked to me being on Methotrexate for a year. There are several studies out there in the universe and the inter webs that show us a correlation directly linked to the use of Methotrexate and increased CSF and papilledema…
So I stopped taking methotrexate in April. However, the papilledema did not go away. I felt instant relief after my spinal tap, but the papilledema, even after months of no longer taking methotrexate is still raging on. It doesn’t show any signs of letting up either…Lucky me! So after going back to my Ophthalmologist and my Neurologist this week, they both recommended that I go on Diamox (A Diuretic) to take the excess fluid out from my spine, brain, and optic nerves to help alleviate and reduce the overall inflammation. I have spoken to several other spoonies (people with this condition AND psoriatic arthritis) and they have had success taking Diamox. I am hoping this does the trick…if not I will be getting a SECOND spinal tap… (Whose the lucky girl??)
I can’t help but wonder if the papilledema is related to psoriatic arthritis. Is there a correlation between overall inflammation in the body and swelling of the optic nerves? I believe so. Now that my knees are no longer filling with excess synovial fluid, I think my body has found a new place to put excess fluid and that place is my CSF and thus causing optic nerve swelling. Aside from a occasional headache, some floaters, and some blurred vision every once in awhile…one would never know that they even had papilledema. I had NO idea until my vision really changed…however my eyesight seems to be improving (how bizarre.)
I really can’t make this SHIT up. I go from knee inflammation to eye inflammation. I do not have psoriasis in my eyes or eyelids which I know is common for some people…so where did this all stem from? I honestly think the Methotrexate started it…and my body will have to finish it, resolve it, and find a way to get rid of it forever.
Will I be out of the woods after a few weeks of diamox? Will I be able to not have to worry that my vision will eventually diminish completely? Will the papilledema finally go away? Will I find out what truly caused this? Where it came from? Why it picked me and my poor eyes? Will there be permanent damage? The fear of the unknown is what scares me the most. That all these specialists have no idea what is the overall root cause of this. I am going to see a Neuro-Opthamologist this week and maybe he will be just as dumbfounded. Will I have to be my own expert and unsolve this mystery myself? Oh wait…I already am…YOU are your own health expert and YOU know your body best…don’t let any doctor tell you how to feel…
I just wish these auto immune conditions were easy to figure out…oh wait…they are the most complicated, mind-blowing, confusing conditions ever. There is no simple answers, no easy way out, and no one doctor to go see. Aside from having a doctor for every part of my body…I wish that I could just figure everything out. Putting the pieces together of this incredibly complicated puzzle seems like it will never end.
When I started my journey with psoriatic arthritis at age 23….I truly had no idea what I was getting myself into. Now I know I will never find a way out…this condition is constantly evolving and changing in my body over the years…
As much as I am frustrated, and feel defeated at times…I have to push myself to keep moving and keep fighting. I will not let this disease define me and take me prisoner for the rest of my life. I am hoping that YOU, yes YOU reading this….will vow to do the same. Do not stop finding answers, fighting, and living. This is not the end. This is not a death sentence. This is yet, ANOTHER bump in the road…that’s all. So buckle up your seat-belt and get ready for the rest of the journey…
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My Instagram is: @psoriaticarthritiswarriors
Thank you for taking the time to read this lengthy update and I promise I will be back sooner than later!