Big ol’ sigh | Arthritis Information

 

Okay...I totally admit that I am not a patient person. This
'inflammatory arthritis' thing is totally new to me - afterall, I had finally
accepted my dx of Fibro and was doing really well with that when BAM!

I went to the RD on Friday, we decided that I was flaring because of the
weather, I explained the pain (I have learned not to mince words) and the
butt-dragging fatigue. He added prednisone (again), assures me that the
Plaquenil will eventually work and then suggested that I visit a Pain
Management clinic just to investigate it.

This is the part of this stuff that confuses me. When I take the Pred - the
inflammation evidently goes away and so does the pain and most of the
fatigue. It seems that if we get a med that removes the inflammation on a
long term basis that I won't need pain management clinics.

Am I being naive? Am I missing something? Am I still just too darn green?
Please advise me, Oh Wise Ones of the Board!

hugs,

Robin, I think your instincts are right here. The pain specialist is for conditions that cannot be corrected. What else have they tried you on? Have they tried MTX? What about one of the biologics? Are they saying that you have just FM or RA as well?

FM pain is hard to treat. But not impossible. And there are different alternatives. One is physical therapy. Some people have found that they get good results working with their Rheumy and a Naturalpathic doctor. Massage therapy really helps. Swimming helps.

Getting plenty, deep sleep is also critical.

They give me Nortripline and Clonapin for my FM and Restless Legs. I have other friends that are on some newer meds for FM. But I don't know what they are called.

My daughter does see a Pain Specialist. They give her Soma for the FM. But it is very sedating. The problem with Pain Specialist is that some are good and will investigate all the possiblities and others will just throw narcotics at the situation. That's what they tend to do with my daughter. However, a good Pain Specialist can do wonders.

But I think you are right. It is too early in the game for this. This sounds more like the traditional "it's all in your head" type of treatment. I think your Rheumy should be doing more for you. If he's not willing to do so, you need a different one. Just prednisone and Plaquenil are not very much, especially if you are in so much pain.

I don't like the sounds of that at all.

Hi Robin

Plaquenil is the mildest of all the disease modifying drugs. It does seem as though you are being under-treated or treated very conservatively.

As for seeing a pain management clinic, that also seems odd at this stage.  Usually that is where we would go when we have trialled all the stronger pain killers (including morphine) to no useful effect.

Trust your instincts and make a fuss! Can you get a second opinion on your treatment from a different rheumatologist?

Best wishes,

I was diagnosed with FM in 2004 - and had probably had it since at
least 1992 when I caught a staph infection that took 6 months to resolve.
I actually had the FM pretty well under control with exercise and some
drug therapy - learning what to do when I felt flare coming, getting on a
sleep assistance drug, etc. Last year, I started getting pain that did not
resolve - exercise made it worse, fatigue had set in again but much worse
than it had been with the FM - it just went on for weeks. I started
mentioning this to my RD (he was treating the FM much more
aggressively than the other two doctors had), he did blood tests and
found that my RF was negative but that my sed rate was slightly elevated.
He put me on Prednisone for a couple of weeks and I felt better. He took
me off Pred and I got significantly worse. He is hesitant to say 'RA' - he
said it is a form of inflammatory arthritis. He has done the baseline xrays
and found no damage other than some ankylosing spondylitis in my
cervical area. I know this is a long explanation - but wanted to give you
an idea of where I am.

As for another opinion, my RD said I could do that if I would like. He did
go on to say that he felt that he was treating this more aggressively than
most since most older docs would tell me take a couple of Aleve and
nothing else.

I have an appointment in four weeks (he sees me every 4-8 weeks - and
has for the last year). I am going to make it very very clear that the pain is
going away with Pred - I do not need pain management - I need the
inflammation to go away on a consistent basis.

Thank you - and all this board - for the great support. I am thankful to
have found you! hugs...

Okay, this is a sign that you are definitely with wrong Rheumy: "He did go on to say that he felt that he was treating this more aggressively than most since most older docs would tell me take a couple of Aleve and nothing else."

The standard for treatment for RA now is to treat it aggressively in the beginning when you have the most chance for remission and BEFORE damage occurs. He is NOT treating you effectively. You need to call him on it or change doctors. Go to WebMD, John Hopkins or Mayo Clinic web sites and read and print out the standard protocols for treating RA. Also go www.rheumatology.org and www.nih.gov. Make yourself familar with information so that you can get the results you need.

And, if you are in that much pain, I would not wait 4 weeks if you can get in sooner.

It really makes me angry when doctors talk down to patients like this. You deserve better treatment and more respect. He should be considering putting you on MTX. If that doesn't work, then possibly one of the biologics. But this "wait and see" attitude" or "first we have to have a diagnosis" is for the birds. A lot of people are suffering needlessly because of this type of attitude.

Some people never test positve for RA. I've had it 6 years and my last test was negative, yet there is no doubt that I have it based on other clinical evidence. Fortunately, my Rheumy started treated me seriously from the beginning.

Did your rd tell you that pred. IS NOT a long term solution.  It has serious side effects long term and is a temporary or last resort treatment.  It sounds to me he is giving you no alternative.  I would change rd.Yep...I agree that you may need a second opinion (RD) and the one catch is that Prednisone is not a long term solution....nasty nasty long term effects.Thank you so much to all who replied. I am definitely taking care of this
issue! hugs...Glad to hear it, Robin. If all you are getting is prednisone, there's a very good chance your joints are eroding while you wait. You can't fix that. A good doctor will not treat RA conservatively. 
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