End Of The Road

DeadEnd

Well, the writing on the wall has been pretty clear for awhile now.  Anyone who has been reading along on this blog has probably already seen this coming and it will come as no surprise.  But for all others, it’s official.  There will be no more Benlysta infusions for me.

Back in February of this year, my Rheumatologist told me that she would give it a few more infusions and then would revisit the topic of whether or not to have me continue the Benlysta infusions.  Since I was scheduled for an infusion a week from today, I emailed her to see what her thoughts were on all of this.  Given that I have had more issues since starting the Benlysta, and I’ve shown absolutely no signs of any improvement, it was a no-brainer.  She feels, and I agree, that I am to discontinue the Benlysta now and monitor my health over the next 4-8 weeks keeping an eye out for any possible withdrawal symptoms.

My Rheumatologist was most kind and very understanding.  Like myself, she’s saddened that an improvement in my condition was not the outcome and writes, “… your info is the best data I can use on which to base my therapeutic decisions.”  At least that bit of good did come out of it.

I will not use this venue to bash the drug because I have come to know too many people that it has indeed helped.  Some in small ways, some in major ways.   It was a chance–just a small chance, according to the statistics, and one I happily tried.  After all, 50 years is a long time for Lupus patients to wait for a new drug. My results will be put together with many other results and, hopefully, be the basis for many other new medications for SLE.  One always has hope!

I would encourage anybody just now stopping by this blog to find out more information about Benlysta and it’s effects, to first scroll to the very bottom (first) post and read your way up to this last post.  You’ll get the full picture of my experience on Benlysta.  As always, I pray that something I’ve written will be of encouragement to you.  My story is only one of many stories.   It’s been my pleasure and blessing to journal this experience for you.  May God bless you  as you ponder your own journey.

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Post 7th Infusion Update

Another rough road getting to this point but I was able to have my 7th infusion this past Monday, April 15, 2013.  The eye issues cleared up a bit and I think it’s safe to say that it was either the recurring episcleritis or seasonal allergies wreaking havoc.  My Rheumy asked me to ‘push through it’ and go ahead with the infusion and so, I did.

Interestingly enough, the day of my infusion proved to be enlightening.  It’s standard procedure for blood work and a urinalysis to be done each month at the infusion.  Actually, it’s drawn and collected even before the Benlysta drip starts.  It was no surprise to me to find out a couple of days later that my urinalysis shows a high RBC count (blood).  Couple that with my lack of bacteria in the recent culture and my symptoms … more and more it looks like interstitial cystitis.  Nothing can be done at this time to speed up my appointment. 😦  Still set up for May 7th.  The pain and discomfort is controlled with pain meds.  Labs also indicated a low platelet count and I have yet to see the C3-C4 results. Hmmmm.

I have to be honest and say that things are not looking peachy right now.  It seems I am not going to be one of those that does well on this new medication.  I have had more problems (as you can see by this blog) since I started it then I had before.  The old adage of ‘the benefit must outweigh the side effects’ is a bit comical as I’ve seen NO benefits and LOTS of side effects.  My doctor is not encouraged and I’m fairly sure she will pull me from the drug soon.  I have told my husband, “ONE more thing goes wrong and I’ll have to insist on it.”   I wanted this to work so badly but, as I’ve said many times before, perhaps it just wasn’t meant to be.

I’m not sad or happy about any of this.  Just numb.  I will move forward regardless of what happens because most Lupus patients will tell you that you can’t build your life on it, but rather past it.  There is so much more to this life and it has to be taken just one day at a time.  I lean on Matt 6:34 “Therefore do not worry about tomorrow, for tomorrow will worry about itself.  Each day has enough trouble of its own.” NIV  God is good and He’s got this covered!  I’m relying on His strength each day to do what He would want me to do in all things.  See … I told you He is good! 🙂

So, regardless of this journey’s outcome, I’m keeping my faith strong and keeping things one step at a time on the path He’s set before me.

 

The Eyes Have It!

I must apologize for taking so long to post an update.  It’s not because I haven’t wanted to, but rather, because of the issues going on and just not feeling up to posting an update.  Let’s see if I can make this short.

The issues I spoke about in my last post still exist … possible interstitial cystitis.  As expected, a urine culture showed no bacterial growth.  Having gone through two rounds of antibiotics with no improvement seemed to be a good indication it’s leaning toward IC/PBS.  Still waiting on that May 7th Urology appointment to see if that’s a definitive diagnosis.  In the meantime, watching my caffeine consumption and dealing with it with pain meds.

I’m due for my next infusion (the one rescheduled from the 1st of April due to the antibiotics) in two days.  Hold on there though!  Lo and behold, I have all the makings of pink eye (conjunctivitis) or my ever recurring episcleritis. 😦  I’m sure it will be more than evident by Monday morning, in which case … you guessed it!  Another postponement of the infusion.  At this point, I’m really not sure if I should be praying for it to clear up so I can go ahead with the infusion or that it won’t because these infusions seem to be leading me to more problems then before I started.  I’m confused and frustrated, to say the least.  The picture to this post says it all.

Not much else for now.  I will write later in the week and let you know if the infusion was a GO or not.  Till then … be in the Word, pray, listen, then be in the Word some more, pray some more and listen harder. 🙂  God bless you!

One Step Forward, Two Steps Back

I know, I know … that title should be the other way around.  If I had any control over it, that’s what would happen.  Sadly, that’s not the case so this is a ‘here we go again’ post.  I’ll make it short because, quite frankly, I’m in no mood to write much.

Mood is the first thing I’ll briefly touch on.  Remember all those issues I spoke about in my previous post/video?  Well, it’s happening all over again.  My emotions are a roller-coaster, the cloud has descended once again and I feel like crawling in a hole.  ‘Nuff said!

I am the antibiotic queen.  My new title … self imposed, of course.  Approximately 10 days ago I had, what I thought was, the making of a UTI (urinary tract infection).  I had Cipro left over from my last hospitalization for the colitis so I did 5 days of that. Nothing!  Actually, worse.  Called my Gyn NP and she put me on Bactrim and Pyridium.  Five days of that and things are even worse.  Nothing is touching this pain but my pain meds.  The NP says that it sounds like possibly Interstitial Cystitis (Painful Bladder Syndrome).  She says, “You need to see someone!”  😦  Can’t get in to see the Urologist till May 7th. *sigh*

So, to conclude, I had to cancel my next infusion which would have been this coming Monday and pushed it back until a C&S (culture and sensitivity) can show there’s no infection.

At this point, I’m praying hard and asking God … “Is it worth all this?”  I’m crazy mixed up about things right now.  Prayers appreciated. *sniff*

Video Update!

It’s been several months since I did a VIDEO update so I put one together yesterday and got it on YouTube.  Here you go…

Post 6th Infusion Update

Wow!  Can we say ‘night-n-day’?  For a change, I have an upbeat and positive post to report.  Halleluiah!  I think I could have easily entitled this post something like ‘waking from the nightmare’, or maybe, ‘out of the fog’.  I would happily like to explain. 🙂

If you read my previous post which was written just prior to my infusion yesterday, you’ll see I was having a really rough time.  I won’t go into all of the symptoms that I was dealing with but, please feel free to refer back to the last post.  I can sum it up by saying it was like going through menopause all over again.  Or, better yet, a tiny slice of hell-on-earth.  I knew that it was a toss up on whether it was because of the Benlysta OR because I needed the Benlysta.  It was just days from my next infusion and I had hoped that it was just my body depleted of the Benlysta–needing it in my system to combat the effects of the Lupus.

I am happy to report that I woke today feeling quite a different person.  Now, I don’t want to sugar-coat anything in that I did wake feeling like a truck ran over me during the night.  I always feel this way after each infusion.  Very achy and very tired.  But this time was different.  I woke with the aches, but not the tired feeling.  And best of all, for the first time in two weeks, I did NOT have a headache.  Praise God for that!

My husband and I had gone to our cabin this past weekend (something I won’t plan on in the future when it’s right before an infusion) for some much needed R&R.  However, Thursday night there I spent with the worse migraine to date.  Honestly, it was so bad all I could do was cry and throw up.  My husband spent most of the night heating up a warm washcloth for my forehead.  I stayed in the cabin the whole weekend but fortunately, Don was able to get out and do some hiking with the dogs as well as took two of our grandsons to a nearby park for some basketball.  I was virtually a blob on the couch the whole weekend.

Anyway, back to today.  I just came in from taking a nice long walk on this beautiful day.  Well, it is beautiful now but we have a winter storm moving in later tonight.  BUT, I don’t have that ‘low pressure moving in’ headache.  Is that great or what?  I stood and chatted with a dear neighbor for nearly an hour and was clear-headed and fine the whole time.  At nearly two in the afternoon, I just took a smaller dose of my pain medicine to stave off some of the stiffness and aches.  Honestly, I feel like the fog surrounding me … or better yet, the dark cloud, has lifted.   I feel human again. 🙂

Time will tell if I, once again, get the overwhelming symptoms just prior to my next infusion on April 1st.  But if I do, I will recognize it as my body being depleted of the Benlysta.  However, if my symptoms occur shortly (praying hard they do not), then I’ll have to speak with my doctor about her thoughts on what may be happening.  For now, I’m going to just thank God for this much needed respite and use it in whatever way He would want me to.

Thank you for reading … it’s a blessing to me and I hope these posts are helping others too.  As always, comments and questions welcomed.  May God bless each of you abundantly.  Oh, and stay safe if you’re anywhere in the line of this snow storm!  Till next post…

Going Back Thirteen Years!

This is what I’d like to refer to as an in-the-moment post.  It’s the here-and-now of it.  I can’t get any more specific than I am right now.  It may not be the best time to post but it is certainly the most honest way to post.  I don’t have much in me by way of strength in my hands but I’m going to use what I can to get this to you—an update before my next infusion in five days.  I’ve been experiencing some new symptoms that I felt needed to be written about so that those considering Benlysta, or new to Benlysta, will be aware of it.  Here we go…

Honestly, if I weren’t nearly 13 years post menopausal, I would say I was in full blown menopause.  I’m on an emotional roller coaster that has me, at times, in a puddle of tears on the floor.  I mean I cry at the drop of a dime.  You name it, from the daily pain, to sappy commercials on TV, to cute cat pictures on Facebook … it’s awful!  Add to that the mental fog, and desperately trying to remind myself of what joy and blessings I have and that makes for one messed up head.  Hot flashes then Raynaud’s coldness of the extremities and you get an exact duplicate of the big M.

Abdominal pain is something that is escalating but I couldn’t tell you why.  It’s like waking feeling like I was used as a punching bag.  Pain killers aren’t doing much either … just to give you an idea of what I mean.  Any food, even smoothies, makes it horribly worse.

NO, the headaches have not eased up.  Neither has the vertigo.  Again, I can’t honestly say if it’s weather related or not.  It is the tail end of winter here in the Northeast so that amounts to a lot of headaches for people sensitive to barometric changes.  Still, I mention it to just give you the whole picture.

Much of this is new to me.  If it’s something I’ve mentioned before, it’s just gotten worse.  I think I know what’s happening but, until my next infusion I won’t know.  I spoke to my Rheumy’s nurse and asked if it’s possible that because I’m so close to my next infusion, I’m feeling the effects of the last one wearing off and my body is retaliating.  “Very, very possible!” was her reply.  As I said, until I get the infusion and see if some of this wears off, I won’t know.  I pray that it does though!!!  That actually would be a good thing because it would help show I am reacting in a positive way, to the Benlysta.  Yes?  I don’t know … I’m the foggy one, remember!  🙂

Enough from me for now.  Prayers appreciated for anyone reading this.  My apologies for being a downer.  I’m trying.  Really, really trying to be upbeat and optimistic and clinging to my faith in God and relying on His strength moment by moment each day.  Some days it’s just so hard.  Not that my faith waxes and wanes … just my joy.   May I just take one minute to say a big THANK YOU to my husband.  Actually, THANK YOU GOD FOR GIVING ME THIS MAN!  It would take a whole other post to tell you just how wonderful Don is.  Also a big shout out THANK YOU to some very awesome people who have helped me to remember who I am in the Lord!

We head to the cabin for a much needed few days soon.  Wish it were going to be warmer but I’m going to brave the temps to try and get out for some walks … when not curled up by the wood stove.  No matter what time of year, God’s glorious mountains and lakes are a beauty to behold.  Not to mention the crisp, cool air that helps to clear the cobwebs away.  Maybe I’ll just stay there. LOL  So, till next week’s post infusion update … God bless you!

Dejected

The title says it all.  But, while it isn’t encouraging, I will try to post in an upbeat manner for I have full faith in God that ‘all things work together for good’ (Romans 8:28).

I saw my Rheumatologist today for my 1st visit with her since I started my infusions 5 months ago.  She had high expectations that I would show up today in much better condition than my last visit.  Sadly, that was not the case.   Apparently, the changes that I have experienced while being on the infusions are not good experiences and certainly don’t indicate any benefit being seen.  My headaches/migraines are worse, my pain levels are high (even to the point she had to increase my morphine dose), my GERDS, vertigo, IBS and the mysterious tailbone pain, are signs of negative side effects of the drug and not the opposite.  She said that she will wait for 3, maybe 4,  more infusions and then, if no signs of any improvement, she will discontinue the treatment for the side effects cannot outweigh the benefit (if any at all) of the drug.  Plus, insurance companies want to know that the $10,000 per month drug is actually of some benefit as well.

I knew going into this new treatment that it’s not a drug for everyone with Lupus.  Still, I had high hopes and have been doing my best to keep my optimism up there.  She [my Rheumy] had indicated that all of her successful Benlysta patients had shown signs of marked improvement in pain and mobility within 5-6 months.  I have not.  She poked and prodded and had me walk heel then toe, bend over, twist this way and that and her eyes said it all.  😦

I did indeed walk out of the office feeling dejected.  I had thought I might hear ‘we need to give it more time’ or something like that.  The doctors discouragement was my discouragement as well.  I will spend much time in prayer about this for I must always remind myself that God is in control and knock it into remission or not, each day is still a gift from God, with a purpose He will make known.  I will bear up and plod on as best I can and it will all be by His strength and not my own.  For that, all the glory goes to God.

May you be blessed today in an abundant way!

5th Infusion – Update!

Hello friends, family and loved ones.  Yesterday was my 5th Benlysta infusion and I wanted to write you a short update.  I always say ‘short’ but wind up writing much more than I thought I could. LOL

Absolutely nothing different with the actual infusion this time as last time.  They didn’t even think twice or look at me oddly when I mentioned I had no Benadryl last time.  So, again, no Benadryl this time either.  BUT, like last time, this did nothing to improve my fatigue following the infusion.  I did not sleep well the night before but that’s pretty much the norm for me every night so I can’t really chalk it up to that.  There’s just something about the day of the infusion that wipes me out.  Today, the day after, I’m up but still in my pajamas and robe at three in the afternoon.  I’ll probably be in the same garb by bedtime. 🙂  So, I can report that this tiredness seems to be the norm with each infusion.

I had reported in my last couple of posts that my GERDS had been acting up something fierce.  Oddly enough … the last week to ten days, it’s subsided considerably.  Could that be the effects of the Benlysta wearing off as I approached my next infusion or just a quirk and the Benlysta has nothing to do with it?  I think the only way I’ll know is if I do nothing to change my diet and see if it flares up again now that I’ve had another infusion under my belt.  I will report it to you.

Headaches! Oy … let’s talk headaches.  They’ve increased about the same time the GERDS has decreased.  Again, is it related to pre-infusion stuff?  I can’t honestly say.  For all I know it’s this wacky northeast weather we’ve been having.  I thought I’d mention it still the same.  Again, let’s see what this newest infusion does for my headaches.  Calm them down … or nothing. Hmmmm.

Lastly, I have to mention this and I do so only because a young girl who posts her Benlysta infusion updates via YouTube mentioned this or I would never have given it a thought.  I’ve been getting this pain … ah, how do I put this?  Tailbone pain is the best way to put it.  Yes, I have been called a pain there before–ha ha ha.  Still, it’s inexplicable because it’s not due to anything like sitting around all day.  I do get up and around but, let me sit anywhere for more than 15 minutes and, well, my backside starts aching.  Odd, I know.  Like the young girl posting, I have no clue what that’s all about but it’s new for me so I thought I’d mention it.

As far as anything ‘good’ being noticed … I think so.  I have an appointment with my Rheumy in two weeks and I hope to review this with her.  I have noticed days of decreasing my pain meds with little ill effects.  I have also noticed better flexibility in my knees.  I am praying that these are positive effects of the med and not my imagination.  I’ll keep you up to date.

Okay, enough writing for me today.  Although, I have to say, that’s about all I feel good for the days following my infusions.  Until next post … God bless you abundantly according to His good will.

Holding Steady

I don’t want to fall into that trap of not posting simply because of nothing new to post.  For those of you following because of being on Benlysta, or considering Benlysta, it’s important for me to keep up with the reports … no matter how boring. 🙂

I really do have very little to report but, as I’ve said in the past, no news can be good news.  Because I’m not having any bad reaction to the Benlysta, this is good news.  Because I’ve had no signs of improvement … that’s not so good.  Still, I must be patient as I’ve only had 4 infusions.  Too soon to really notice anything different.  To date I can say that there are days where my pain medication can be lowered–just a bit.  I’m not ready to say WOOT on that yet but I’m definitely keeping an eye on it.

I stopped the Krill Oil supplement due to the acid reflux and that did help.  However, I do find that some foods are giving me fits of acid reflux when I DID have that under control.  Not sure what the correlation (if any) is but I’m keeping an eye on that too.  I’ve basically just had to keep track of the types of foods that seem to wreak havoc with my stomach.

So, you see, not much new.  I’m okay with that but I am keeping it in prayer and looking forward to being able to write more positive results to those that follow my posts. 🙂

God bless all of you and keep looking up!

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"You think you're in control of your life? Truth is, you're in control of squat!" Ed's Story ~ by Ed Dobson
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