Hi all! I am pretty new to this site, but not new at all to the PsA issue. For years I got diagnoses such as Rheumatoid Arthritis, Sero-negative lupus, Mixed Connective Tissue Disease...but recently received the diagnosis of PsA. I was on Enbrel, Remicade, Arava and Sulfasalazine...The last was Humira with Mtx and I had wonderful results for 10 years...then it stopped working completely and I have been really ill for the past 18 months. My rheumatologist wanted me to try Stellara or Simponi, but I read about Otezla and she agreed to prescribe it, though she has no other patients on it at this point.
The psoriasis part for me has been just a few spots on my hands and arms, behind my right ear and sometimes my scalp...however at times it becomes bad in the private areas and about drives me mad. The inflammatory arthritis part is awful...I have 3 fingers on my left hand and two on my right that are terribly inflamed, stiff and cause so much pain. Sleep is often difficult, and fatigue is always nipping at me.
I am married and mother to 4 plus one bonus son : ) and grandmother to 4 plus 3 bonus grandchildren, and we have one more grandchild on the way. I was a single lady for 22 years and just got married in 2012. My husband has been my earth-angel with the opponent of PsA. I just lost my beloved father at the age of 95 1/2 on Sept. 4, and still have my darling Mom at age 92 1/2. I guess the '1/2' only count when we are very young or very old. : )
My husband just retired, but this year has been difficult...I have not been well, we lost his Momma in January and now my Dad. My middle daughter has MS and is not doing so well right now either. So, we have not been able to do many things as retirees, but are grateful to have such a big family to love and care for. We got a lab puppy last year, and in the morning we are driving to the ocean beach for a day of r and r and sunshine, we hope.
Thank you all for the warm welcome! I am now on Day 8 of Otezla, and have not yet seen any improvement (I know it is waaaay early : ) but also have not had bad side effects...a tiny bit of tummy upset and loose stool and occasional headache but all this is MINOR compared to what 'would' be. Today is a bad pain day...so just got back from taking my Momma to lunch...she and my Dad were married 65 years and he has only been gone 4 weeks but she is a real trooper and trying so hard! I'm gonna take a nap. Hope & love to all!
Hi I am now on day 14 of Otezla...I have not seen any profound changes, but some small ones...a patch of psoriasis on my right hand is smaller...the swelling in my left little finger has changed though it is still there...still no terrible side effects at all just some mild ones. The biggest challenge so far has been getting insurance issues ironed out, but they seem to be. Hope and love to all.
I have now been on Otezla for 6 weeks. The pain from the PsA has lessened somewhat...the swelling has lessened just a bit...the psoriasis has lessened a bit as well. I am hopeful,
The first couple of weeks I had some headaches. All along I have had some diarrhea but nothing terrible. The worse thing I have experienced, which started about at week 4 and continues, is a wave of deep pain across my mid-upper abdomen which can take my breath away...it comes and rolls across, lasting from a few seconds to perhaps 2 minutes and there is some nausea as well, then it is gone but leaves me feeling a bit weak for a little while.
I have great insurance, however since this is a pretty new drug all the kinks have not been worked out in getting it smoothly...there have been problems getting my insurance to override it as they do not yet carry Otezla in their specialty pharmacy so they have to use another specialty pharmacy...this part has been exasperating...that is an understatement...however it was resolved, for now anyway...we'll see when I call in for my refill next month.
Hi Gigi, hopefully Otezla will work well for you--it sounds promising! Wow, longevity--so great your parents are living into their 90s, but my sympathies on the passing of your dad. It's not easy no matter how old they are!
You have a lot to keep you busy and, thankfully, a good husband and large family to keep you going. I don't understand why the biologics just quit working--it seems like that happens to everyone at some point. Ten years is great, but what a letdown that must have been when the PsA broke through! Hopefully, Otezla will be a good replacement. Keep us updated on your progress!