Labor Day Weekend

I’m relishing three days off from the bustle of the office.  I will say that it appears I have made some progress on my RA flare this week.  Monday was such a terrible morning that I called the rheumy at 9:06am and was told that he could see me at 10:45.  I hurried up a client meeting and headed to the office.  The doc took one look at me, my hands and knees and I felt his empathy.  He knows I don’t complain so he knew that I was having a tough time.

We both agreed that the Enbrel has stopped being effective.  Eight years is a long time to have a successful experience with Enbrel so it was time to move on.  Which answered my question from writing last weekend – when do you know it’s time to switch.  He suggested I try Xeljanz, by Pfizer.  It’s a pill that you take twice a day and he has had some patients that have had some success with it.  He gave me a 30 day supply and said if it worked, we can figure out the health insurance and get it prescribed.  The health insurers will pay for it only if you’ve been on a few biologics that have stopped working.  Enbrel was my third (I’ve been doing this since 2001).

He told me to start Thursday which is my usual Enbrel day, but I cheated and started Monday night.  Tuesday I felt worse than I’d felt Monday, but I persevered, even going to the gym.

Wednesday when I woke up, the painful stiffness I’d been experiencing in my fingers wasn’t there and my knees felt better.  Thursday was even better, and my boss saw me walking around commented how well I was moving.  I walked the dog that evening when I got home.  First time I’ve done that in at least a month.

I have read online that it works quickly.  However some patients get inital relief from it and then it loses it’s effectiveness quickly.  It also is one of those medications that has the long list of side effects.  It suppresses the immune system, so I will have to continue my diligence with illness.  But for today, I think that I can get outside and do some yard work and the rest of the long labor day weekend will be spent clearing the kitchen cabinets to prepare for the renovation that starts in a few weeks.  Oh Joy!

My takeaways from this week are that I am fortunate to have a doctor that can see me on the same day.  I was so happy that within a 2 hour time frame, he could see me.  I’m also happy that there are alternatives.  As he said, 8 years ago there were only about 3 products to choose from.  I’ve used all three, so fortunately there are newer alternatives on the market.  I’m also fortunate to have gotten almost 8 years of remission with Enbrel.  And I put my fitbit on this morning for the first time in months.   Onward and upward – enjoy the weekend folks.

 

 

 

Summer 2016

Once again summer has gone fast!!! It always does, doesn’t it?  Considering I haven’t felt my best, it’s been a good summer.  My RA flare is continuing and I feel it every morning when waking up.  The stiffness in my fingers and thumbs is real. And painful.  My knees hurt as well, although they seem a bit better than earlier this summer.

Acupuncture?  I’ve had 3 sessions and I’m not sure that’s what enabled me to walk all around Chicago last week for 5 days, or if it was sheer determination and stubborness.  We walked to dinner 4 nights, once even for 1.5 miles.  I would start the day with pain meds and might add another in the afternoon.  I walked slower than in past trips, and was more deliberate in my steps, but I walked nonetheless.

Cocktails and snacks with two nieces, dinner with good friends one night and 2 business dinners with Mr. Phat and lunch with some gal pals kept me busy for 5 days.

I have a few more acupuncture visits that I’ve paid for and will decide at a future date whether to continue.  My primary thoughts at this time is when is it time to change biologics?  I have been on Enbrel for 8 years.  I was in remission for most of that time, but no longer.  Is it time to explore options?  That’s what’s facing me going forward.  I’ve been trying to be patient to see if the flare resolves itself because as far as biologics go, the devil I know is better than the one I don’t know.  But when is it time to switch?

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Here’s Mr. Phat and I taking selfies with the kids on Molly’s 2nd birthday this week.

 

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Here’s lunch along the river in Chicago one afternoon with old friends.  One of which has RA so we were able to share strategies.

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This is from yesterday.  We spent the afternoon at the Sergio Franchi Memorial concert in Stonington CT.  What a fun event!!

Truth is, I don’t have much to complain about.  I’m doing OK.  RA be damned.

So…it’s an RA Flare

After hoping (don’t know why) that I had chronic Lyme disease, I’ve discovered that I have a good, old fashioned Rheumatoid Arthritis Flare.  Not doubt about it, I’ve been lucky.  I’ve had low disease activity and basically been in remission since at least 2008.  The last flare was self imposed because I decided to stop taking methotrexate.  That lasted about 6 months until I had a bad flare and a bout with depression.  No wonder, stopping a serious medication cold turkey.

So I’ve been in a mostly good place and managed my RA since 2008.  I was always in charge.  I would tell my body when it could hurt and I would take a day of rest, but other wise, I was moving and living life on my terms.  Mostly.  Which is very lucky for an RA patient.

I’m not sure if stopping my meds for much of February due to illness helped bring on the flare.  The physical symptoms started in March.  I’ve also had some job stress over the past couple of years with a move to a new office, with new players to manage me.  I work in a male-centric environment now.  My assistant died of cancer.  Several people close to me died of cancer.  I tend to hold everything in for a long time and then fall apart later.  Perhaps this is a late response to the stress and grief, coupled with the brief time without my meds.

I hurt.  Mostly my left knee, but my hands and wrists hurt, my fingers are stiff in the mornings again.  I’ve been limiting movement because it hurts too much and I’m fatigued.  I can’t both work my job and play hard right now.  I don’t sleep well.

Fortunately when I last saw my Rheumy several weeks ago he gave me some pain meds, so I didn’t have to deal with that complicatory factor.  I’ve been taking one or 2 most days to tolerate the pain and get to work.  I’m taking my injections twice a week and hoping that I will get some sign as to when it’s time to change our biologics.  Perhaps the Enbrel has reached the end of it’s effectiveness for me?  I’ve been on it since about June 2008.  Eight years is a long time.  I’m not sure when you know that a medication has lost its effectiveness.  Trial and error?  Patience?  I’m not a very patient person.

I am going to try acupuncture this week as well – I’ve thought about it in the past, but felt good.  Desperate times….. So for the time being, I’m calling the shots and trying  to remind my RA that I’m in charge and to stop flaring.

Spoke too Soon

Saturday I posted to express my appreciation for all the support I received from Phat50Chick.  Sunday morning I woke early and once again the left knee was excrutiating, very swollen and I couldn’t put any weight on it.  Mr. Phat ran to the pharmacy for another Medrol pack and I started my second course of prednisone in less than 2 weeks.

This time I will admit to not having felt progressively better each day.  It’s been very slow to improve.  Today I’m better, but I still have swelling, pain and still am limping, even though I try not to.  It dawned on me last night that I had lyme disease last summer and I wondered if I had a final follow up blood test to determine that I was no longer fighting it.  I called my primary care doctor this morning and he wanted me to come in for a blood test, but then realized I was on prednisone and so I can’t have the blood test until 2 weeks after stopping taking the pred.  Which is the 29th of July.  If I can go that far.  I did find this ugly graphic on the CDC website but it’s appropriate.  The right hand picture is me.  One truly fat, overswollen, can’t straighten out or bend it, knee.

medical illustration of Erythema migrans, medical illustration of Bell's Palsy, and medical illustration of an arthritic knee

Maybe it is RA.  Maybe I’m having a flare in my knee.  Maybe the Enbrel has run it’s course and I have to switch off it.  I have an appointment with my rheumatologist next week to discuss that possibility as well.  I also have a consult with a acupuncture group.  Because I’m curious about acupuncture.  But maybe it’s not RA???

As I’ve always said here on Phat50Chick – you have to be your own advocate.  Your own doctor.  Because I have RA, the ortho and rheumy didn’t think about Lyme, and my Primary Care didn’t really either.  I had to be the one to remember the lyme and look it up and think – Huh?  You can’t be too sure.

I will keep you posted.

 

Giving Thanks

Thank you to all my readers who reached out and touched me after my last post.  It really moved me to have so many responses. Thank you so much for all your support.  You were right, I didn’t cave in.  I did what I needed to do.  I took the 6 day course of prednisone and I still slept, my appetite wasn’t affected and the only thing that really reminded me of past tapers was the day after I finished I had to have a good cry.  I forgot the emotional toll of prednisone.

So I felt best on day 4 – 12 mg of pred.  Beyond that I could feel the knee flare kicking back in and it seems pretty strong this morning, although I have just gotten out of bed and maybe when I start moving around it will be better.  But I will renew the prescription for the prednisone to have it handy just in case.

My dog also has been sick with a urinary tract infection and oddly enough the first course of anti biotics didn’t help her, but the second has and she seems back to her bossy demanding self.  We need that around here.  Also, the caterpillars morphed into moths last week.  We had moths everywhere – it looked like the woods were in motion when you looked outside, but Mr. Phat has just some inside from mowing the lawn and said they’re gone!!  And the defoliated trees have started leafing again, so the small part of my world is getting back to normal.  I wish I could say the same for the larger world around us which seems to grow uglier each week.  It’s a sad and senseless world.

I’m not Superwoman

My favorite season.  I love summer – I love being outside working in the gardens, and having dinner on the patio.  But since my last post I’ve not had enough of gardening or dining on the patio.  The pain in my left knee (formerly my good knee) got excruciating 2 weeks ago – too painful to walk again and I had to resort to using a cane, which hurts my pride, but I’d rather move with a cane than not move at all.

I had to get a cortisone shot at the walk in clinic because the pain made me cry out loud which also isn’t my style.  I set up appointments on the same day with my rheumy and ortho docs.  I prepared myself for a new knee – I thought that I had a block of time  this summer that could accommodate a new knee.  That’s me:  The planner.  OK, the control freak.  And I went in saying “I’m ready, let’s schedule this sucker.”

No such luck.  The knee pain was not due to the deteriorating knee, but was an RA flare.  A Flare? But I don’t get flares!!  I’ve not had a real flare in years.  So I was in denial for a few days as I waited for the cortisone to grab hold and help me return to my balls to the wall lifestyle.

No such luck.  It’s not going to happen I realized.  So this morning I caved in and opened the Medrol pack that my rheumy had prescribed for me and told me to use if I didn’t feel better in a week.  Basically its a 6 day, tapered course of prednisone which I swore I would never ever take again after finally getting off it in 2008.  I said I never would do it.  It’s a super drug – it will attack any inflammation in your body and rid you of it!! But it also is a stimulant.  Keeps me awake for days and swells your appetite.  And your body grows to love it, which makes it hard to get your body off it.

I broke that promise to myself, but the pain last night in the left leg – the entire leg – due to the flare was excruciating.  Took 3 halves of a vicodin pill before the throbbing receded enough for me to sleep.  My dog is stressed because our normal routine has been upset and I’m not walking her.  My routine is upset because I haven’t been walking.  And I feel the RA attacking my wrists too.  It was time to take the prednisone and see what it does.

And 5 hours later the knee and wrist are already feeling better.  So the Doctor is right.  And Mr. Phat  is right.  He said “you didn’t cave. you took something to help you feel better.  It’s OK!”

Superwoman I am not.  But maybe soon I can begin participating in life again.  Especially since the caterpillars are getting ready to cocoon.  (see previous post)

Knees and Caterpillars

Well it appears that the cortisone shot I got in my left knee during March has worn off. The pain  has become pretty intolerable and yesterday I did too much housework and then went to dinner and a concert last night so my knee was throbbing when I got home and interrupted my sleep.  I visited my primary care physician this week who said that the knee is pretty bad. I have a cyst in my knee.  He didn’t elaborate but I’m pretty sure it’s a baker’s cyst because I’m a perfect candidate for one.  He said I need to get a new knee and I promised I would, but needed about 8 months to get through a busy spell.

I did speak to the rheumy’s office on Friday and they are going to arrange for an injection of sodium hyaluronate i.e. Supartz or Synvisc.  I have had both in my right knee and it’s been holding up very well.  I am hoping to get similar relief in the left knee at least until next spring and I’m gearing up for a knee replacement in the spring.  Hopefully it works because the pain is incredible and I’ve been taking 2 – 3 vicodins per day, which I guess for acute pain isn’t all that bad, but is a no no for chronic pain.gypsy-moth-caterpillar

We are having an influx of gypsy moth caterpillars where I live in RI.  The caterpillars showed up en mass almost 2 weeks ago – they were EVERYWHERE.  They crawled up the house into the eaves, they climbed up the trees and they were on the bikepath.  Now they are munching and leaving little clusters of leaf debris along with their excrement.  Many of the trees are bare and they chewed a beautiful crabapple tree in our back yard.  We drove to dinner and a show last night through the woods and there were areas where there were no leaves at all.

It rained last night which just made it more of a mess – Mr. Phat used to blower in the yard yesterday to get rid of everything and today it’s back again.  I’m told that they will be here until about July 4th which is discouraging.  The devastation to the forests in this area could be pretty significant.

So I’m finishing up this post so I can go vacuum the kitchen area and the front door again because you can’t help bringing in a bit of crap when you step inside.  Happy Sunday Folks.