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.

 

 

 

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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.

In Like a Lamb

March definitely came in like a lamb, compared to the last few months.  Since November I had gotten sick in 4 consecutive months.  I think it was actually the same infection that kept rearing it’s head.  Finally, the 4th course of antibiotics, coupled with a new allergy medication seems to have done the trick.  I’ve been healthy for about 5 weeks.

I did stop the injectible RA meds for 6 weeks.  Over the past few years I’ve wondered how well they really work.  I found out.  By the long weekend in February my wrists hurt enough to need ice, my knees hurt like days of years ago, pain meds barely touched it and exhaustion ruled.  I started back on the President’s holiday with an injection of Enbrel.  The following Monday I did an injection of Methotrexate and this morning was Enbrel.  I thought I’d try alternating weeks rather than taking both each week.  Perhaps too much immune suppression lowered my defenses too much.  So far so good.

Finally I got a chance this past weekend to try out the gear I purchased:

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And it was a beautiful weekend to do so!!  This is Mount Lafayette, across from Cannon Mt20160306_083551 [141181]

This Picture is from the Mittersill Chair looking over to Mt. Lafayette. 20160306_100725 [134286]

And here’s a selfie – not a great picture, but I was having a ball!!!

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The season isn’t going to last too long in New England this year, so I gotta ski while the skiing’s good.  Thankfully my joints feel good enough to be out there.

 

Frustration

I follow a number of blogs by individuals with chronic health issues, most of them with Rheumatoid Disease like me.  Seems to be a common theme of late – we are all frustrated by our health, our doctor’s and their offices and the medical insurance community.

For me, the frustration is that I’ve been unable to fully get rid of this upper respiratory infection that I’ve had on and off since Halloween.  I would get well enough to think it was behind me and I would resume my normal activities and then WHAM, it would knock me on my butt again.  This happened 4 times, and this past week when the fatigue and sore throat returned I called my PCP and got in to see him that day.  I expressed my frustration and my fear of constant anti biotics, but unfortunately due to my anatomy the bacteria gets stuck in the sinuses and it seems strong anti biotics are the only way to rid my body of the gunk.

He prescriped a stronger anti biotic and for a longer period of time.  He also prescribed Singulair pills at night.  I need another script like I need a whole in the head, but he said that this helps the underlying allergy issue (which I have) and maybe it will help what ails me.

It gave me the chance to discuss my ENT and Rheum Doc visits that I had in the past week as well.  The ENT had gotten the Catscan results of my sinuses.  The passages looked clear, with one exception and therefore he didn’t think I needed sinus surgery.  However, there is still the large bone tumor that resides in my sinuses and that could be part of the trouble.  We decided that I should have a specialist look at it to see if there is a way to extract it.  I haven’t seen a specialist in 20 years and at that time, the surgery required wouldn’t be pretty.  The ENT also reiterated getting off the Enbrel.

My Rheum doc said my meds were fine, everything was fine on his end.  He doesn’t see a lot of patients that seem bothered by sinus infections who are on Enbrel.  He said he doesn’t think that the Enbrel is causing the infections.  However, he agreed that the less medication I take, the better it is and perhaps spread out the injections and see how I do.

So I’m stretching out the Enbrel, and going about 10 days in between methotrexate injections, taking Singulair and a steriod nasal spray while using the neti pot daily.  Hopefully I will be headed down a better road shortly because I love winter!!!

 

What’s Up Doc?

PillBottle

 As mentioned in my previous post, while it doesn’t happen often, phat50chick falls.  I’m still down, sitting here in my bathrobe watching Netflix.  Again.  This is all I’ve done since Saturday, other than an outing to see my doctor on Tuesday.  He diagnosed me with an upper respiratory infection, gave me the anti biotic Ciproflaxacin and told me to take them with ProBiotics.  This is pretty standard for me when I get ill.  I just checked the side effects of Enbrel and note the second one.

Common side effects of ENBREL

  • Injection site reactions such as redness, swelling, itching, or pain. These symptoms usually go away within 3 to 5 days. If you have pain, redness, or swelling around the injection site that doesn’t go away or gets worse, call your doctor
  • Upper respiratory infections (sinus infections)

Prior to being diagnosed with RA, I was susceptible to sinus infections because of my allergies.   Years ago, my ENT (ears, nose, throat doctor) told me I had chronic sinusitis. In addition to that I have a bone tumor, called an osteoma, in my right ethmoid sinus which prevents my sinuses from draining.  Basically I live my life one step away from a sinus infection.  All it takes is one little thing to throw off the balance and I’m down with another respiratory infection.

This time I’m surprised as to how much this has kicked my butt.  My doctor insisted on giving me a note for work, stating I was out all week.  In my brain I was thinking that by Thursday I would certainly feel good enough to go to the office.  Who cares what the note says.  My doctor always is ultra conservative with me in this regard.

I guess for good reason.  He knew that I would most likely feel like a truck hit me through the end of the week.

Maybe Tomorrow?

Tuesdays

weight-scale

Tuesdays are my weigh in day.  I don’t have a functioning scale at home – mine needs a battery and I haven’t purchased one because I don’t want to deal with the frustration of the scale right now.  In the past I would step on the scale every morning and naturally it fluctuated every day which frustrated me beyond belief.

So I decided that for the first 3 months, I would weigh in only on Tuesdays at the office during my WW meeting.  I was pretty jazzed over the weekend because I had been very good with my points and had some leftover this week, and hadn’t even touched my activity points.

My efforts will have to wait until next Tuesday.  I’ve been flat on my sick bed with some ailment – cold, flu, allergies, RA flare.  I don’t know.  All I know is that when I don’t want coffee or food, it means I’m sick!

It also means that I have an appointment with my primary care doctor tomorrow, even though I just saw him last week for a check up.  My body doesn’t fight bacterial or viral infections by itself.  My RA meds suppress my immune system, and enbrel in particular promotes bad sinus infections.  I’ve smartened up about calling the doctor sooner, rather than later because even if I think I’ll feel better tomorrow, or want to, I never do without something to help me kick it out of me.

So back to tracking my points and hoping for good results next week!!  Stay healthy!