Time for an update! (Wish it was good news)

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…

Please follow me on my INSTAGRAM for Daily updates on my condition, words of wisdom, advice, products I love, how I am feeling, and what makes me smile!

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!

Cimzia and Knee Surgery….

After a few months of treating my insane psoriatic arthritis flare up, my doctor has approved me for starting the biologic Cimzia. Since I am allergic to both Remicade and Humira… I am not sure how my body will be responding to this next biologic. I can only hope that my body can tolerate it, because I do not want to be on methotrexate or prednisone tapers for the rest of my life and existence. I know that something has got to give…literally. Since quite a few months have gone after stopping Otezla, my psoriasis still seems to be just has bad as when I first stopped taking the Otezla. Sure my light treatments help, but it is still here with vengeance. It could possibly be from stress, the poisonous water around here, or just my body still trying to figure itself out. I thought for sure that the methotrexate would have calmed down the psoriasis, but it isn’t doing a damn thing. I have been patient waiting for it to get better, but it just seems to be the same day in and day out. No better and certainly no worse. Of course I have used topicals to try to relieve some of the discomfort of my skin lesions, but who wants to do that day in and day out, over and over again…like a dermatological robot. I see my rheumatologist in  2 weeks and hopefully will get my first two introductory doses of the Cimzia. I hope and pray that this biologic is the answer. If not, I am running out of options slowly but surely. I just cannot keep getting my knee drained every 4-6 weeks and have 300 cc’s of fluid just pour out of it. 

Along with the Cimzia injections, I am going to be getting arthroscopic knee surgery on my right knee in a few weeks (eek!!!!!!). My knee specialist/orthopedic surgeon, will go in arthroscopic-ally access the major damage, repair my three meniscus tears, remove a cyst, and do a partial synovialectomy to remove part of the synovial membrane that is inflamed (synovitis) and causing all of this excess fluid build up. I opted for surgery option number 1 because it is the least invasive, and the recovery is very quick. I should be up and walking right away after this surgery with the help of physical therapy of course. I am hoping that this surgery will be a game changer for my knee and for myself in general.

If this surgery does not work, then I will need surgery option number 2. Surgery 2 means that the doctor makes a massive incision, moves my knee cap, removes the entire synovial tissues (whole synovialectomy) puts my knee cap back, and stitches me up (or staples…who knows). The recovery would be long, and require me to be in a brace in which I wouldn’t be able to move my knee. This surgery scared me a bit, considering that it would be more involved and move invasive…I just don’t think I am ready for that kind of surgery just yet. In addition, this specialist told me that  I will more than likely need a knee replacement in the next 10-15 years. Hearing that also scared me. I am only 33, but I never dreamed of having any surgeries like this of any kind any time soon. I thought maybe somewhere along the line yes, but not in my 30’s. 

It appears that my psoriatic arthritis isn’t showing any signs of slowing down or giving me a break and I am ok with that. I am ok with the fact that this card was dealt to me, because I am strong enough to handle it, and I won’t let it define me.

I must keep fighting and forging ahead. I have to keep trying every option, until I find something that works. There is no “right answer” as to how to treat this aggressive and debilitating form of arthritis. Just a matter of finding the best fight for each individual case. 

Keep on fighting my friends…and fighting the good fight. I am here for you. You are not alone!!!!

Follow my Instagram page: PsoriaticArthritisWarriors

Another Day, Another Knee Drain…

Ever go to the doctor and wonder why you happen to be the youngest patient in the room, always? Well this is fairly common when you are young and have an auto-immune condition. You look around and see just how sickly everyone else is, and how debilitated they are as well. The wait wasn’t too long…but who knew what was to come next…

I had to go see my rheumatologist for a follow up regarding my progress or lack thereof from the Methotrexate. As it turns out, my knee looked worse and felt worse and so does my skin at the moment. This is what a bad flare up does as we know!  The only good news I got at the doctor was that my blood pressure was great. 118/70! I’ll take that any day since the Otezla (which I stopped a few months ago) made it really high. After my doc looked at my knee, read through my recent blood work results and my back MRI, she wanted me to head to the ultrasound room to see just how much fluid had re-built up inside my right knee. Let’s just put it this way, she couldn’t even see my knee in the image…it was ALL fluid. So she did her usual procedure, scrubbed the knee down, placed the freezing agent (to numb it topically which does NOTHING), got the DEPO shot ready, mixed with a little cocktail of cortisone and in went the 12 gauge needle…which let’s just say IS LIKE A GIANT STRAW! Sure enough as soon as she put the needle it, I didn’t even flinch (as I am overwhelmingly used to this… as sad as that is.) So the DEPO/Cortisone went in, and then she switched out the needle top to start draining the fluid. The fluid came out instantly…and so quickly that my mom had to assist. Container after container filled with over 60 cc’s per unit. Sure enough there was 300 CC’s drained of synovial fluid (the equivalent of two soda cans) that came out of me. My doctor looked very concerned and said this cannot happen anymore.

This is the ACTUAL IMAGE FROM MY KNEE DRAINAGE YESTERDAY (Minus one)

 

You have had far too many knee drains in the last 36 months. It is time to UP the methotrexate, start you on a prednisone taper (yuck I hate prednisone)…oh and DRUM ROLL PLEASE….It’s time to start a BIOLOGIC.

:::::::Insert long pause of internal cursing, screaming, yelling, kicking, etc.::::::::

Wait what? You want ME on another BIOLOGIC? Even after my allergic reaction to Humira and Remicade….I wanted to wake up from the bad dream turned nightmare. Is this really happening? Has my arthritis gotten this much worse that I have resort back to more chemotherapy drugs/poison/toxins in my body? I couldn’t believe it. I wanted to cry, I wanted to scream, and I wanted to run out the door. But I couldn’t this time. I couldn’t escape the inevitable fate of this disease and my body. I have no choice. I had no other options. This was it. The smack in the face-wake up call I was running from for the past 2 years.

So I did what anyone who got another death sentence would do…I signed my life away to approve the drug to get prescribed. The new drug I will be trying (which isn’t new its been out for awhile now and is made in Belgium) is CIMZIA. What an adorable name for two poisonous injections into my thighs every two weeks. I can’t wait for this drug to arrive so I can feel the burn (or the pain) of the poison seeping into my skin, veins, and bloodstream. Maybe this drug will work, maybe it won’t. Maybe I’ll have an allergic reaction right away, maybe I won’t. Its the unpredictability of these medications and how my body reacts that scares me the most.

I can no longer be in fear and run away from these aggressive medications. Clearly my body is ready to try something else because my knee is telling me so. So I will keep on fighting the good fight because I don’t have a choice. The frustration and anger that comes from all of this is deep within me. Know what quite knows what it is like to be in my shoes on a daily basis. I just ask for understanding before judgment.

So cheers to upping my methotrexate, starting my prednisone taper, and awaiting Cimzia to enter my psoriatic arthritis journey of a life. I