Monday, September 19, 2011

Playing The Waiting Game

I am not a patient person--never have been.  Waiting makes me testy and I tend to put my life on hold while I wait.  And that is one of the reasons why I have been MIA here.  My wait has been going on since before Labor Day.

My very good friend came down with shingles last winter.  She still is suffering from the side effects.  Thankfully, there is a vaccine for this and the recommended age to get it has been lowered from 60 to 50.  Of course, insurance companies aren't paying for this yet, but J said she would pay four times the amount it costs ($250) just so she wouldn't get shingles again.  K's doctor strongly suggested that he gets this--and with K's kidney problems, he definitely needs to watch his overall health closely--so we started doing research and making phone calls to see what we need to do to make this happen.  Other than making sure we could pay for this, K was good to go whenever he wanted.  For me, it was another story.

Being on Enbrel, I knew I couldn't get the shingles vaccine, as it is a live-virus vaccine.  Also, GETTING shingles while on Enbrel is not a good idea--there is the possibility for some extremely serious side-effects.  I knew I didn't want to get shingles, so I had to find out what I needed to do to make this happen for me.  There was next to no info that I could find on the interwebs--other than 'do NOT get a live-virus vaccine while on Enbrel.' So, my first call had to go to my dermatologist's office to find out how long I had to be off of Enbrel in order to get this vaccine.  I needed to know how many days/weeks/months after my last injection was a safe amount of time for me to get the shot and then I had to know how many days/weeks/months AFTER before I could go back on Enbrel.  This call took place a week and a half before my appointment at the internist's office--plenty of time for me to get the info needed so that the internist and I could plan my course of action.  At least you would think so.  The call-back from the dermatologist's office never happened, so I went to my appointment completely unprepared.  NOT. HAPPY.

As soon as my appointment was done, I marched up to the dermatologist's office to see if I could get any answers from them.  As it turned out, they weren't getting very much info themselves.  The closest anyone would come to answering their questions was a drug rep said that 3weeks before and after should be okay.  With that small amount of info in hand, I decided to make a couple of calls of my own.

My Enbrel is handled by a specialty pharmacy, so I called to see what they had to say about all of this.  The pharmacist said he is hearing that patients are abstaining from Enbrel from 2-4 weeks on both sides of the vaccination.  So, the 3 weeks that the dermatologist was told is in that time frame.  I then called Amgen, the company that makes the drug--WHY I didn't do this first is beyond me--just to see what they had to say.  I was NOT impressed or happy.  The recommendation?  'Every case is different and every patient needs to talk to his/her own doctor and plan a course of action designed specifically for him/her.'  Big fricking whoop.  So, it was back on the phone, this time to my internist to see how we are going to proceed.  I made the phone call last week Tuesday.  I still have not heard back.

Tuesday will be four weeks since I last gave myself an injection and I don't know how much longer it will be before I am in a full-blown psoriasis flare.  So far, my skin isn't reacting too much to the absence of Enbrel. I am finding some stiffness in my joints that could possibly be the beginnings of arthritis, but I'm not going to jump to any conclusions.  Right now I just want to get this over with so I can get back to my life--and the sooner the better.  When I finally get the go-ahead for this vaccination, I'm hoping there will actually be vaccine available--shortages have been occurring.  I'm really, really hoping all of this can be resolved in the 8-week time frame I had in mind when I first started considering this.  'Cause I REALLY don't play the waiting game well, at all.


***My update on this story can be found here.

12 comments:

ordinaryjanet said...

You'd think that the dermatologist & internist would have a ready answer for a question like that! Of course the drug company is going to cover their ass-if they told you to go ahead and abstain from Enbrel for three weeks before & after and you had a bad reaction, they could get sued. So you're doomed to the merry-go-round of calls and waiting for call backs. :-(

meleah rebeccah said...

* Shingles are awful. my brother had that when he was 18 years old. and man that sucked!

* 3 weeks before and after SHOULD be okay? I think you need a more definitive answer than that!

* And yes, the waiting game, is a terrible place to be.

I hope this all get straightened out SOON!

cmk said...

I heard from the internist's PA and she will talk to the dr...and then get back to me. Oh, yay.

This entire thing has me so damn frustrated. You would think there is a definitive answer. After all, Enbrel has been used for somewhere around 20 years (I believe) and the shingles vaccine isn't the first and only live-virus one to be developed, so people would have had to ask this question before this. I guess I'll just wait to see what the internist has to say--and probably wait as long as she wants me to. I've gone this long, so if I have to wait longer to get the shot, I guess I'll do it. :(

meleah rebeccah said...

*hugs*

cmk said...

And the frustration goes on. I NOW have been told that there should be a 3 MONTH wait before getting the vaccination--but this comes from only one source. And no one can answer me as to whether this is old info, or not. I'm REALLY getting pissed off at the medical profession and the indecision that is coming from them/it these days. I guess this is what we are saddled with because of our litigious society. {sigh}

ordinaryjanet said...

I guess you have to decide-risk an episode of psoriasis or cross your fingers and hope you don't get the flu.

One of my FB friends posted a question about whether or not the flu shot is a good idea-I'd say the responses were 50/50. Some people were vociferously against it. Good luck to them if they get the flu. Though, I suppose some people are sensitive to vaccines and have reactions.

cmk said...

I think I've decided to go through with the vaccination. So far, while on Enbrel, I have had next to no side-effects (knock wood)--and I have only been sick one time. I guess my immune system has been holding up pretty well. This makes me believe (hope?) that my luck will continue and I won't suffer any ill effects from the vaccine.

I have had no problem with the flu vaccine--but it ISN'T a live virus, so I SHOULDN'T have any problems. I know a lot of people don't believe that it is safe/effect/necessary, but I feel as if I have to get it BECAUSE of being on Enbrel. Again, with a compromised immune system, it just isn't all that good to get sick and try to fight off an illness you could possibly have prevented. (And K has finally made his peace with getting it every year--the doctors don't want him stressing his kidneys any more than he has to.)

ordinaryjanet said...

My arm hurt for a couple of days but it wasn't anything really bad. One of my friends is still complaining his arm hurts. The PA who gave me the shot said it was the vaccine, not the needle that was making it hurt. Maybe pressing the plunger slowly would make it not hurt as much. Still, I guess different people have different reactions to shots.

I've got a friend on FB who had a debate about the merits of the flu shot and I was surprised by the number of people who are convinced it's a big scam by the government and pharmaceutical companies. Lots of luck to them if they get the flu.

cmk said...

I've already decided to wait until next month to get my flu shot. I just don't want to get it TOO early--seems to defeat the purpose, as the flu goes through this part of the country a bit later than some other parts. Whether or not it REALLY makes any difference, in my mind it does. ;)

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