Dr apt

[harlin]

Well I just got back from Rheumy apt. she ws not happy. My white count was only 3.8 the lowest it has been so she did another CBC test to ck it again. She switched Prozac to Savella and took me off Restiril. I lost 4 more lbs since last Wed. Total of 36  lbs. She along with my Gp doesn't know what is going on with me. Told me to drink Boost 2 times a day. Up my calorie intake.
Then went to Therapist and she was upset also. Said I had anorexia. Not the one where I don't want to gain weight but the one where something is going on in my body that I have no appitite.
What in the world is going on???
Needed to tell someone
thanks harlin

[lynnmarie219]

Hi Harlin,

What kind of tests are they doing on you to try and find out what is going on with your body right now? In addition to labs have they run any Scans or MRI's...checked your Gall bladder...done an EGD or colonoscopy?

Just s few thoughts off the top of my head...I sure hope you feel better soon and get some answers...please keep us updated.

[harlin]

lynnmarie
I have had a EGD already. I have no gall bladder. I have not had a MRI or scan since Jan 09
Also had a colonoscopy. I don't know what is next. Waiting on blood work again to see if white count still down.
thanks harlin

[DragonflyC]

Did they check your thyroid?  Hyperthyroidism causes weight loss (loss of appetite isn't usually a symptom, but the thyroid is crazy and anything's possible), and thyroid problems are common w/ SJS.

[Bobbie]

Hi Harlin,

Maybe a thyroid for adrenal problem.  I have Graves and was dropping weight and had the appetite of a
lumberjack!  Before I was diagnosed with Addison's I dropped major weight also.  Both of these problems
are taken care of by an Endo.  Just a thought ***

Good luck,  Bobbie

[Bobbie]

Oops! I meant thyroid OR adrenal....

[Dolly Dimples]

  Hi Harlin, I am not even going to have guess at what is going on with you.

                I can imagine you are having a bit of a rough ride right now, so just hope that soon you will get the results,

                   I hope that whatever, it can be sorted soon..  it's so worrying when one doesen't know,   the waiting is agony.
                                                                   Hugs Dolly 

[Patze]

Wow, Harlin, I sure hope that they figure out what is going on with you!  That must be so scary!  Sending you tons of gentle my friend.

Take extra special care of yourself -

Patze

[louise]

Hi ,Harlin so sorry to hear you are having such a rough go of it. Could it be anemia? I'm not very medical savy.Don't let those grandkids wear you down. Best of luck.I will be praying for you.

[harlin]

Thanks everyone, thyroid and iron was normal. They just plain don't know. Have to call GI doc and eye doc tomorrow to see if I can get in earlier than my schedule apt. Rheumy was adiment about this.
Hopefully the new WBC will be better. If not I don't know.
Worries me
Patze thanks for the many hugs.
hugs to all harlin

[lindaneall]

Hi Harlin, I'm so sorry you have not felt well.  I hope they can figure it out soon.  As far as the low WBC count goes, for the last 8 years mine has floated between 2.7 and 3.1.  I have heard of many others with SjS that also have low WBC counts. I think that is "par for the course" for a lot of us.  My rheumy thought my count would improve when I was on Plaquenil for 8 months, but it didn't make a difference.  He just keeps an eye on it.

[harlin]

lindaneall
Thanks for the response. My Rheumy was very concerned and mine is not as low as yours. She thinks she may have to do the Plaquinell every other day.Still waiting on blood work
hugs harlin

[meow]

What is Planequil? I'm new.

[DragonflyC]

Meow, plaquenil is an anti-malarial drug that helps with the fatigue and aches and pains of Sjogren's.  If you do a search of the forum or just scroll through a bit, you'll see several threads discussing the benefits and side effects.

[irish]

Harlin, I am glad to see that the doc is changing your antidepressant. Depression can be a cause of weight loss---a sympton that most people don't realize. It has to do with the chemicals in the brain and changing the antidepressant could improve the chances of the chemicals getting in the right place.

Meow, The plaquenil has been taken by many people for treatment of malaria. When people with autoimmune diseases took the medication they found that they had a remission of some of the autoimmune issues. Plaquenil is given to AI patients at much lower dose than what the malaria patients receive. It generally helps with the fatigue and aching plus improves the energy levels and endurance in people. Some people have improvement in the dryness issues of eyes. Irish