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.

Purple Rain

Fentanyl.  Prince died from an accidental overdoes of Fentanyl.  I was afraid that something like this was going to be the outcome.  Fentanyl is the strongest opioid approved for use in the US.  It’s 50 – 100 times more potent than morphine.  That’s a very strong drug that he was self administering.  I read that as little as a quarter-milligram of fentanyl can be fatal. To appreciate how tiny an amount that is, consider that a standard aspirin tablet is 325 milligrams — 1,300 times bigger. For a man that weighed 112 pounds at his time of death, he didn’t need much to kill himself.

I don’t know what it means because we don’t know where he had gotten the drug – whether it was prescribed or illegal, but Prince had a problem.  Seemed that it started with his hips which were worn down from years of performing in high heels.  He had a scar on one hip, but I’ve never been able to confirm if he had a replacement hip or just hip surgery.  It seems apparent that he had chronic, debilitating pain and must have become dependent on stronger and stronger meds along the way.

The answer isn’t stopping people from receiving medications for their chronic pain.  Rather, meds need to be part of whole body approach to chronic pain – it should include perhaps eastern style treatments such as reiki, massage or accupuncture, relaxation techniques as well as properly administered opioids.  The people in Prince’s circle seemed to know that he was in a downward spiral because they had to divert his plane after a show for a dose of narcan, and they had reached out to some doctors for help. Reports said that Prince was going through opioid withdrawal.

I’m just so sad to see someone from my youth and generation gone too soon due to misuse of opioids – and very strong ones.  Everytime this happens, it puts a black mark on opioids which is tough because when used properly they can help people with chronic pain live a more normal life.  RIP Prince.

TKR

Yes.  Total Knee Replacement.  I visited my ortho this week and learned that instead of needing one new knee, I need two.  The Doc told me in 2009 that I needed a new right knee.  So far I’ve managed my life without getting it done.  Now he told me that the left knee has no cartilage and is also bone on bone.

With RA,  the synovial membrane that surrounds the knee joint becomes inflamed and thickens.  Over time, the resulting chronic inflammation will damage the cartilage.  This will cause cartilage loss, pain, and stiffness.  Then there is OA (osteoarthritis) where as you age, the cartilage cushion that protects the knee will soften and and wear and this causes pain and stiffness.

Another factor is trauma.   I’ve been involved in athletics since I was young and I always had bruised or skinned knees.  I had my share of falls while skiing or hiking.  I fell while biking.  I recently got bifocals and took 2 really hard falls on my knees and hips.  So I think that all three of these factors – RA, OA and Trauma – have contributed to my current knee situation.

So I’m continuing on my normal pace – which is typically warp speed until such time as the pain and discomfort is bad enough that it impacts my life.  Then we will discuss the first knee replacement.  As the doctor said, I’m highly functioning considering the state of my knees, so there’s no reason to rush.  He suggested that when my world narrows is when I need to address surgery.

Until that time, I’m trying to concentrate a bit more on my eating and exercising.  I have been the same weight for 5 years.  Yeah, just about since I started this Blog about trying to lose weight after turning 50.  So I think that I’ve failed!!  Miserably.  I’m doubling down on my efforts because other than my weight and my RA, I’m very healthy.  I’d like to stay that way.