Mid Summer update

View from lunch yesterday in Stonington borough in CTstonington

Tomorrow is 11 weeks since my second knee replacement and 22 weeks since my first.  Feeling good.  I just went on a walk with the dog and realized that I was at a normal walking pace.  It felt good.  I’ve been doing 6000-7000 steps per day and hope to start upping that a bit.  At this point, the most uncomfortable thing I do is stand still.  When I stand still, I feel pins and prickly pinches in both knees.  But otherwise I’m moving along very well.  I went out in public the last 2 days wearing shorts.  I’ve decided I don’t care about the scars.

My RA?  I wish I could say it was better but it’s not.  I’m still very achy every day and mornings are tough.  I saw the rheumatologist this week and he suggested increasing the amount of methotrexate I inject each week.  Today was the first morning I tried that.  We shall see. The dose I was giving myself before wasn’t lasting the week so that I would dose a day or two early, which didn’t thrill my doctor.

The stomach upset that comes with restarting Xeljanz XR has mostly stopped, so I hope that I will soon feel the full effects of the medication.  The doctor said that 2 major surgeries was probably a shock to my system and my immune system is a bit out of whack.  Good point.

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Almost 2 weeks post op

Tomorrow will be 2 weeks post op for me.  It’s gone by quickly even though at times the minutes seem to be like hours.  Overall I’m doing well.  Progressing.  The surgically repaired knee is now my Good Knee.  My Strong Knee.  It’s stable and sturdy and feels good to walk on.  To that end, I walk mostly unaided these days.  I’ll use my cane overnight or for the first few steps in the morning, but otherwise it is not necessary.

My hurdle has been the other knee which no doubt will be replaced in the future.  Being off the RA meds since the beginning of February has caused the expected flare.  In my hands, wrists and the other knee.  The other knee formerly known as my good knee.  The pain has caused me to cry for a few moments most days.  I get overwhelmed, tired, behind on pain meds or just feel a bit sorry for myself.  I sob for a few moments and then rally.  Because that’s what RA has taught me to do.

I was supposed to stay off the RA meds until after the staples were removed, but I will confess to starting the methotrexate 4 days ago, and the Xeljanz 2 days ago.  The swelling in the new knee has diminished, my physical therapist says I’m doing great – I did climb a set of stairs yesterday and walked down the street and back up (it’s a hill).  Today is the first morning I’ve not cried since surgery.  Yes, I was stiff and sore, but the pain seems manageable and the RA flare is being extinguished.

I’ve had incredible support from Mr. Phat.  I couldn’t have gone through this without him.  He’s held my hand, cooked meals for me, and most importantly is my Iceman.  He keeps my icing mechanism full – he says I have a $4 a day ice habit and we’re not even making margueritas.  My parents drove down over the weekend for a visit which proves that you can be 55, but you’re still a daughter.  Mom needed to see for her own eyes that I was doing well.  I’ve had tremendous support from my friends and colleagues at work, which has helped me go through this challenge.  And my ski group, Team Cannon, left for the annual trip to Switzerland over the weekend.  I know that my spirit went with them.

Stay tuned for more updates.

12/20/16

Sick again.  It appears that I have no immune system.  Or that it’s not very effective these days as I’m home sick again.  I just got out of bed at 11:30.  The very sore throat has subsided a bit, I don’t have a fever today, but there’s a little congestion.  And major fatigue.  I got up this morning hoping to go to work for about half a day, but I knew I couldn’t do it and I did not want to spread germs.  I rescheduled several appointments and went back to bed.

It’s been extremely frustrating dealing with this.  I did just ask on one of my RA forums if anyone is on Xeljanz and are they having similar issues.

The good news?  When I’m sick, my RA seems to be a bit more in check.  I think that my immune systems starts fighting the germs and lays off attacking my joints.

October

October 1.  Where did September go?  I’m sitting enjoying coffee looking out the window at the rain.  Fall arrived this week in all her glory. While I will miss summer, fall has great colors and smells associated with her, how can you not embrace it?

Probably a good time to update you on my medication.  I started the Xeljanz just over a month ago and it immediately helped the pain and inflammation, but it also was very difficult on the digestive system.  I also supplemented the Xeljanz thru September with a little bit of prednisone – I had a lot going on and needed to be as pain free and mobile as I could.  I felt pretty good for the the month, other than the upset stomach and relied very little on pain meds.

Visited the rheumy 2 days ago.  We both had reached the same conclusion which was that we didn’t want to give up on the Xeljanz too soon.  He has had such success with the medication.  He gave me a script for 5mg pred, told me to take 1/2 or 1 each day and only take 1 Xeljanz and not 2 per day.  I started that regimen yesterday and waited until after breakfast to take the Xeljanz.  Yesterday was  a pretty good day so perhaps we’re onto something.

Let’s hope because today and tomorrow we finish emptying the kitchen and Wednesday starts the demolition.  I am the painter for the renovation so I am going to need to have my legs in good working order to paint the walls.  Wish us luck.

Lastly, I wanted to let you know that Mr. Phat and I got married in September in a very small, secret, midweek ceremony.  6 adults and 2 children.  We had a fabulous day.  After 10 years of being together we decided it was time.

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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.