Resuming SSZ

Sulfasalazine does awful things to my GI tract, and I was very happy when my rheumy said I could discontinue it.  After five weeks, I started getting achy again, and it’s gotten progressively worse this past week.  This morning I was told to resume the ssz.

SSZ is a drug that is prescribed to people for the treatment of  ulcerative colitis , which I thankfully don’t have.  Nor do I have the diarrhea that is part of that disease.  Those of us without that problem run (no pun intended) into other difficulties when taking this med.  Apparently I have to choose:  I can either walk easily or poop easily.

Sorry if that’s TMI, but I really hate this drug, and it’s not just because it’s an extra 42 pills a week that I have to swallow.  In the spirit of helping others with RA – maybe ask your doctor how to handle any adverse side effects that you might experience.

SIGH

In looking for the bright side – there always is at least one – I’ve written about the side effects of this med so many times that I can now spell words that have always given me difficulty.

D/C SSZ

What an awesome day!  Recently I’ve reviewed my notes from this past year’s doctor appointments.  Those notes typically contained ever-growing lists of joints that hurt.  In making my notes for this most recent appointment, I realized just how much better I’m feeling.  My feet don’t hurt.  My ankles don’t hurt.  My knees don’t hurt.  My neck/throat isn’t swollen.  My elbows don’t hurt.  My wrists don’t hurt.  My hands don’t hurt – I’m even able to wear my wedding ring again.  Best of all, I have tons more energy.

The checkup with my rheumy went well.  I’ve been feeling so much better that I didn’t realize there were still some tender spots, so was surprised that she found a few.  Maybe that serves as a reality check – no cure, just symptom control.

Since it looks like the Enbrel is working so well, I get to discontinue one of the other DMARDs.  I love the methodical approach so we know what works and what doesn’t.  We’re not making major changes – just one medication adjustment at a time.  Given the side effects I’ve experienced with sulfasalazine, I am overjoyed to announce that I’ve taken my final one of those horrid things.

As a bonus, this means eliminating six pills every day.  Reducing the pill count is nice, but no more side effects will be great!

Thank you for reading.

Q&A

A friend has been feeling pretty crummy lately, was sick all through her dream vacation, went to the doctor immediately upon returning home, and was just told that she might have RA.  This is someone who I had never discussed my diagnosis with (usually I won’t tell), but when she said she might have systemic arthritis or lupus, I thought it was time to share a little of my story with her.

After exchanging a few emails, I realized that some of the information I was giving her has never been posted here.  Maybe others can benefit, too.  What should you do when your doctor tells you that you might have rheumatoid arthritis?  If all you’ve ever heard about is osteoarthritis, it can be pretty confusing to think you’re being told you have an old person’s disease when you aren’t old! 

Here, then, is some Q&A for my friend (and everyone else who wants to listen in – or even add their $.02 in the comments section):

Q:  Do you have RA?
A:  Yes.  My first rheumatologist called it “rhupus” because I have some symptoms of RA and some symptoms of SLE.  My current rheumy has diagnosed RA and not said anything about lupus.  Maybe this will sound odd, but it doesn’t really matter to me any more what the diagnosis is.  When I first got sick, I was desperate for an answer: “What is wrong with me and when will I get better?”  It no longer matters what the exact label is.  Many of the autoimmune diseases are treated the same way.  I’m taking a more pragmatic approach now:  what do I have to do in order to function?

Q:  How long do flare-ups normally last?
A:  Every person is different.  My flares usually only last a couple days.  I started to say that my worst one ever was last November-January, but I realize now that it went away after I added a second DMARD.  Maybe I was getting worse instead of going through a flare.

Q:  Do they (flares) come very often?
A:  Not for me.  Once RA is controlled, flares should be rare.  You will probably want to keep a calendar so that you will notice if there’s a pattern.  Personally, I can guarantee a flare by pigging-out on cookies (or eating one piece of cake).  Some people discover that flares coincide with their cycle.  Others discover that there’s a dietary link (gluten and nightshades are common foods that people notice).  It will be much easier to find a pattern if you’re writing things down.

Q:  Have  you ever tried a prednisone taper to help with the pain and swelling?
A:  I had a prednisone injection and quick taper back when I had pneumonia and all this started.  I have not taken it long term. My rheumy suggested pred, but wanted to try an NSAID first.  Between rx-NSAID and a DMARD, I did well enough that he never added pred.  That might change given that I don’t think I can get through Christmas the way I’ve been feeling this past week.

Q:  How do you find a good rheumatologist?
A:  In general, if you get along well with your PCP, it is a good idea to ask that doctor for a recommendation on who is good (or who to avoid) when you need a specialist.  It’s nice if the doctor accepts your insurance.  Doctor D did a good series about how to choose a primary doctor, and I think his tips are equally applicable to any doctor you’ll be seeing long-term – such as a rheumatologist.

Q:  Do I really need a rheumatologist?  Can my PCP treat me?
A:  Yes.  No.

Normally, I think that people should find a family practice (or med/peds) doctor that they like and stick with a doctor who will treat the whole person/family.  A zillion different specialists are not usually necessary, so I asked my PCP to treat my RA.  In retrospect, that wasn’t one of my best choices.  Having tried both ways, I think it’s best to see a rheumatologist for autoimmune diseases.  That’s nothing against PCPs; they are trained to diagnose just about anything (lots of doctors only know about their little corner of the world).  Family practice and med/peds docs, in my opinion, are a lot more useful than physicians with specialized training who forget that they’re treating a person instead of one of a bunch of isolated parts.  I like my PCP a lot, but he just wasn’t familiar with what to look for with this particular disease; it probably wasn’t fair of me to ask him to do what he wasn’t trained to do.  A rheumatologist, not a PCP, should be treating RA.

Q:  Will prednisone/tramadol control my pain?
A:  Maybe.  This combination should help short-term while you’re waiting for long-term drugs to kick in.  Pain control is not the primary goal (even though you might think it is).  Your long-term goal is to control the disease and prevent joint damage.  Pain killers and anti-inflamatories won’t do that.

Controlling the disease and preventing joint damage will control the pain.  If you have RA, you need Disease Modifying Anti-Rheumatic Drugs.  My experience with DMARDs:

Plaquenil (hydroxychloroquine) - this is an anti-malarial.  People who took vacations to places noted for malaria came home and told their doctors how much better they felt while taking this drug.  Doctors eventually made the connection, did some studies, and discovered that it can slow/prevent disease progression in RA.  This drug is also used to treat lupus.  It takes two months to start working, so don’t expect any overnight miracles.  High doses can cause problems with eyes.  The dosage used to treat RA/SLE is not usually a problem, but it is still recommended that people have an annual eye exam.  My eye doctor bills my regular exam to my vision insurance, but there is an extra test that he does related to the plaquenil and that is billed to my medical insurance.  Can be hard on the stomach; take with food.  I take mine with breakfast and supper.

Azulfadine (sulfasalazine) - this, too, can be hard on the stomach; take with food.  This, too, takes a couple months to be effective.  It is not used to treat lupus.  The pills are brightly colored orange/yellow (one person I know calls it “prescription cheetos” because of the colored powder that comes off on your hands).  People who jump in with a full dose tend to get pretty sick.  I started with 500mg daily for one week, the second week increased to 500mg bid, the third week increased to 1g bid, and did not experience any stomach upset doing it this way (months later increase to 1g tid).  You will notice that sulfasalazine turns your urine bright yellow – expected, not to worry.  One possible side effect is kidney stones, so make sure you drink lots of water if you take this.  You’ll want to be drinking lots of water anyhow, as another side effect is constipation (why do doctors prescribe multiple drugs with this side effect and not consider a stool softener, too?).  If you take this, drink constantly.

Methotrexate - this is the “standard” DMARD.  Unlike the two mentioned above, this one is most effective if taken on an empty stomach.  Again, start with a low dose and increase if necessary.  This med can be hard on the liver, so no alcohol.  The side effects can be difficult in the beginning, but take hope that it will get better.  Really!  One way to make it easier is to take it at bedtime so you sleep through the worst of it.  For people who find this extremely hard on their stomach, an injectable form is available.  I take mine on Tuesday night at bedtime.

There are other DMARDs, too, but these are the most common (and the only ones with which I have any experience).  Notice that with DMARDs, it’s not “pick one.”  Combination therapy is typical.  If these don’t work to control a person’s RA, then there are stronger medicines available.  Insurance won’t cover those stronger ones (biologics) in the beginning, so you’ll probably start with one or two of these DMARDs and then move on from there if needed.

Hang in there!  It gets better!