Friday, July 8, 2016

When side effects are too much.... Otezla update

I have put off writing this blog for one I wanted to be in my right mind and secondly my hands have been really painful for weeks.

About a month ago I reached a point that my sanity was more important than my arthritis.  Otezla was making some progress on both my skin and my arthritis, but my psychological state was not good.  I didn't have the depression many people have as a side effect, I have been there before and this was not it.  I had something for me that is much worse.  I was in a constant state of angry.  My fight or flight response was in constant fight even when it didn't need to be.  I was choosing to isolate myself because I was becoming concerned that I would act on my violent thoughts.  My family and friends had noticed my change in behavior so it wasn't just me feeling things were worse than they were.  I was in a very scary place for me.  After discussing this with my Rheumatologist along with other side effect issues like migraines, nausea, stool extremes of either severe constipation of severe diarrhea it was decided to try a different route so to speak.  Because it was working on my disease it we didn't want to abandon it completely so I was dropped to 1 dose a day.  My psychological side effects lessened noticeably in less than a week, but my Psoriasis and PsA returned with a vengeance as it's known to do when I screw with whatever cocktail I'm on.  Lefludimide has been added back into the mix and today was the first day since the change that I have felt my pain levels had improved, and I have noticed this week that my Psoriasis is improving so there is a glimmer of hope that the combo of half strength Otezla with Lefludimide will be a working combo for me without the extreme side effects.

I have often had adverse reactions to both biologicals and DMARDs.  In fact the Rheum said that she got a warning when prescribing the Lefludimide that I have had adverse reactions to similar medications.  Even with Remicade which I was on for about 5 years there were side effects, but for me the payment was worth the benefit.  The side effect/benefit ratio is something that is very personal for each person.  I may be willing to put up with more than someone else because I just don't have many options left to me, but no matter what the whole game is about quality of life.  If you aren't achieving a better quality of life what is the point?  That being said I feel it is responsible of me to mention that we must be realists in our optimism.  I know I will never be what I once was even if I achieve clinical remission.  I have too much permanent damage.  That is a reality.  I can hope for a lower constant level of pain.  A level I can function with most the time.  A level that I can sleep with.  Expecting the impossible is not going to improve your quality of life just like giving up and letting the disease run rampant won't.

I will keep this brief as even with my hands feeling better they are still pretty stiff and easily agitated.  I hope this finds everyone out of flare, and if you are in flare that you find some way to ease your pain.

~H