Change is good … happy 2015!

Ever since my diagnosis in Fall of 2012 I’ve had a litany of suggested “cures” from well meaning friends and family.  Going gluten free has always been one of them.  Until my RA surfaced I was always very healthy and ate a healthy balanced diet high in produce.  Local, organic, home made … seems just about perfect right?

Last Spring I was at my GP office and she suggested I stop eating wheat … really?  Her too?  She asked me to read Wheat Belly, and to stop eating wheat for a month and see what happened.  So, what happened?  Nothing happened … until I was out with a friend and we went out for BBQ.  The next day I couldn’t walk down the stairs.  As it turns out I seem to have mild wheat allergy.  When I do eat wheat these days I can tell the next day – it aggravates my joints, causes digestion problems, and migraines.

These days it’s just Enbrel – I rarely use prednisone, and the migraines are reduced to maybe once or twice a month instead of once or twice a week.  In your own quest for balance and good health don’t be afraid to try new things.  Have a great 2015!

 

Stress reducing AND Anti-inflammatory?

I learned today that one of my favorite foods is both stress reducing AND anti-inflammatory.  That’s right folks … DARK CHOCOLATE is all of these terrific things, on top of being delicious of course.  Although I have some daily, it’s clear that I’ll have to increase that amount.  Read all about it here, and you know that if it’s on NPR then it must be true.  Happy eating!

Making Hay

Memorial Day weekend.  I was feeling good, the sun was shining, so I went to the garden to do a little weeding.  Ya know … some days you should really stay on the sofa and delegate. Long story short, I fell on my hand and though nothing was broken it was severely bruised, my right wrist has hurt badly since.  Stupid … stupid … stupid … I’m hoping this recent bout of stupidity passes soon!

The Enbrel is working for now, and except for the right wrist I’m feeling pretty good most of the time.  I’m having what I understand to be a fairly common problem with an injection site reaction, but it is manageable and not getting worse each week, and am hoping that this gets a little better over time.

Hello Mudda … Hello Fadda …

… Hello Enbrel … My liver had two bad tests in a row and my Rheumy pulled the Methotrexate (MTX).  I had been feeling very run down, and after stopping the MTX I immediately felt awesomely amazing … for about 3 weeks.  When the MTX finally left my system I then realized that the Humira was barely working for half a week, leaving me in a bad way for the remaining 1 1/2 weeks until the next bi-weekly injection.

On to Enbrel, a weekly self-injection, hoping that the “down days” are less.  I managed through the transition with some very low doses of prednisone, I have such a low tolerance for this stuff that 2mgs a day works for me.  The first few weeks seem promising, although there is an almost overwhelming sense of tiredness that has set in.  After reading this post on R.A.Warrior‘s site I realize this may be due to removing MTX from the mix of meds.

Hopefully this all resolves sooner than later and I have the energy to get to the pool, and to enjoy my garden this summer.

Two steps forward …

It’s been a long time since the last post … basically I’ve just been really super busy.  I have been keeping up on my reading however, and do enjoy everyone else’s blog updates very much.

I do feel a progression in my symptoms, it is now in my hips.  However I haven’t changed my meds … yet.  I’m wondering if it is time for a change, or if I should hold on to my current routine as long as possible. I hope I am NOT like the frog in the slowly heating pot of water … that doesn’t realize it’s heating to the boiling point until it’s too late.

Although I have a high tolerance for pain, I have a very low tolerance for change.  Even a vacation, or unusually active schedule puts me in a bad way for a week or two.  Eventually I seem to even out, but it’s getting harder and harder to dislodge me from my routine.

Graduation!

Cue the Pomp and Circumstance!

I have graduated from monthly blood work and appointments with my Rheumatologist, to now one time every 3 months.  This is a nice feeling … cutting the cord just a little bit.

We are also experimenting with reducing the Methotrexate back from 15 mgs weekly, to 10 mgs.   This change does make me a little nervous.  A couple months ago I learned this med is very necessary in keeping my symptoms at bay.  I suppose we can always increase it again.

On the other hand it might be nice to lose some of these little side affect from the Metho.  I have noticed some slight hair thinning (though I’m the only one who does), and my taste buds are definitely off the mark … red wine tastes just awful!

Take good care of yourselves.

Symptom Update

I realized that I have been posting less about meds and more about me.  This reflects my state of mind … which is that I’m feeling more like a person and less like a patient.  However the R.A. walks with me every day and I am mindful of it always.  Here’s an update on my med routine and symptoms .

Methotrexate – 15 mgs every Friday evening with dinner.  I have no stomach problems, and little to no side effects other than some tiredness the next day which I can work through.  I have noticed thinning hair, but I am the only one who has noticed it.  I’ve added Biotin to my regimen to see if this helps reduce the hair fallout in the shower.  I still need this medicine to get on with my life – recently I had to delay taking the dose for 2 days due to a medical procedure and I was in a LOT of pain the following week.

Humira – self injecting every other Monday morning still requires a little pep talk (c’mon you can do it!), but much less these days.  Afterwards I put on a band-aid, relax for an hour, and then I get up and get on with my day.  The next day I am achy, like all my joints are “bubbling”, and then the following days after that feel a good improvement … though sadly not the very strong improvement I felt the first couple of months.

Symptoms are mostly limited to my right shoulder and elbow, and both hands, which makes being a musician tricky.  I take 2.5mg of Prednisone rarely, and only if I have a very busy performance week to get through.  I also sometimes take an Aleve with dinner if my right shoulder is particularly achy and I think it is going to wake me up at night … which it does every few weeks.

About a month ago I started a “medical” calendar where I log noticeable symptoms and what I am taking – whether prescribed or over-the-counter.  Maybe a pattern will emerge?  If not it will help me be a good patient as I can give clear reports to the doctor about when something happened and if there are any possible causes (excessive activity, delayed doses, etc.).

OK – gotta go warm up for my gig tonight!  Take good care of yourself.