Advice to a friend on medical approaches (RA and SLE)

(Note:  An e-mail from an old friend arrived early this morning.  His wife has been diagnosed with Rheumatoid Arthritis, a very serious auto immune disease, in some ways similar to Lupus.  He asked my advice and I was glad to write him pronto.  I pass it along to any others who may be interested.  Solidarity, Hunter)

From me:

Really good to hear from you, Dave! But I am extremely sorry to learn that your good spouse has RA.  It is a close cousin of Lupus.  Although the profound assault by Systemic Lupus (SLE) nearly killed me three times at the outset ten years ago, I began to push the SLE back in 2009 and 2010.  No docs expected it to ever fade out and away, but extensive blood tests in April 2011 indicated "no active lupus" and this was confirmed last April 2012.  And although genetic, it's not expected to return -- but we are naturally vigilant.  Here is something on  my War:  http://hunterbear.org/shooting_lupus.htm  You and your wife may find it interesting -- and encouraging.

I think the most important thing in these dire medical situations is to Keep Fighting -- and never, never give up.  I think meditation and prayer (or, if not into prayer, very positive thoughts), are extremely important on a consistent basis.  And I have a lot of faith in the supportive prayers and good thoughts of others.

The high medical priests in these situations are, as you know, rheumatologists.  If you have a good one, fine.  I immediately didn't like the one here in Pocatello who obviously saw minimal hope for me and pushed chemo drugs -- which I consistently rejected all the way through.  (There are now some tentative findings to the effect that, in Lupus at least, chemo drugs may -- may -- in some cases induce Lymphoma.)  Early on, I had a first rate young GP doc, a good listener with common sense and medically conservative, and together we went through the years.  By the time he left, late 2010, I was on a Sunny Trail and the medics who came into my situation thereafter have been guided by his work.

So it's critical to have a good doctor -- and an atmosphere of mutual trust.   But even with the best of medics, it's important for the afflicted person to use his or her own good sense -- to give serious consideration to personal intuition and instinct.

I was initially given Prednisone as my primary medicine.  That can easily, to be blunt about it, "rot" bones. It also gave me temporary and artificial diabetes.  Early on, I took bone-strengthener:  Fosamax has limitations and negative side effects, so my doc prescribed Actonel.  I took that as long as I took the Pred.  I also took calcium supplements and I always like buttermilk.  We phased Prednisone out as soon as we could and introduced Plaqenil, usually an anti-malarial med, which has very few side effects.  The diabetes then left.

I know the meds for RA and SLE are different -- but you may well want to pursue Actonel re potential bone difficulties.

A good and sensible vitamin regimen is very desirable.  I give very high marks to Vitamin D.  I always eat a lot of fish and seafood generally and that's considered very good for Lupus -- and certainly could apply to RA as well.  And eating well and sensibly is just generally beneficial.  Plenty of sleep is important and, if possible, exercise.

Supportive family and friends are extremely critical from the outset.  I am very fortunate in that regard.  There are national and local groups for various maladies.  It would be helpful to join a good national RA organization, simply to keep up with medical developments.  There are sometimes also local support groups.  Some of those can bring in good speakers and pass around pertinent info -- and give important moral support.  But some local groups can simply wind up talking about their respective medical dosages in the context of gloom and doom.  None of us need that whiny stuff.

I had some pain -- though not as much as some other Lupus people.  I avoided painkillers, did meditate frequently. I also focused hard on my writing, reading, good TV, giving advice, and as much activism as possible -- many things other than Lupus.  Keeping busy is always Good Medicine.  If your wife's pain is consistently problematic, it wouldn't hurt to get an opinion from another doc.  It's my understanding that there are more med options in the case of RA than there are in SLE.

Again, Keep Fighting -- and always remain convinced that one can push and keep the Monster down!

To give the time honored slogan of the Jackson Movement of half a century ago, WWW -- We Will Win.

Again, very good to hear from you Dave.  Keep in touch.  If I can be of any further help, don't ever hesitate to contact me.

Solidarity.

Hunter (Hunter Bear)

HUNTER GRAY [HUNTER BEAR/JOHN R SALTER JR] Mi'kmaq /St. Francis 
Abenaki/St. Regis Mohawk 
Member, National Writers Union AFL-CIO
www.hunterbear.org 
(much social justice material)

I have always lived and worked in the Borderlands.

See my piece ON BEING A MILITANT AND RADICAL
ORGANIZER -- AND AN EFFECTIVE ONE (Mississippi et al.):
http://crmvet.org/comm/hunter1.htm

The Stormy Adoption of an Indian Child [My Father]:
http://hunterbear.org/James%20and%20Salter%20and%20Dad.htm
(Expanded in Fall 2012. Photos. Material on our Native
background.) 

See the new and expanded/updated edition of my very well-reviewed 
"Organizer's Book" -- the inside story of the massive Jackson
Mississippi Movement, the murder of Medgar Evers, and more.
And with my new and very substantial introduction:
http://hunterbear.org/jackson.htm