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
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.
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
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.
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
Oops! I meant thyroid OR adrenal....
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
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 (http://www.freesmileys.org/smileys/smiley-hug008.gif) (http://www.freesmileys.org/smileys.php) (http://www.freesmileys.org/smileys/smiley-hug008.gif) (http://www.freesmileys.org/smileys.php) (http://www.freesmileys.org/smileys/smiley-hug008.gif) (http://www.freesmileys.org/smileys.php) (http://www.freesmileys.org/smileys/smiley-hug008.gif) (http://www.freesmileys.org/smileys.php) (http://www.freesmileys.org/smileys/smiley-hug008.gif) (http://www.freesmileys.org/smileys.php) (http://www.freesmileys.org/smileys/smiley-hug008.gif) (http://www.freesmileys.org/smileys.php) my friend.
Take extra special care of yourself -
Patze
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.
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
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.
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
What is Planequil? I'm new.
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.
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 ;D
Thank you for the info!
I'm seeing the endo on the 22nd--he's the one who found it. I told him to fwd the labs to my regular doctor. I haven't made an appt with the rheumy yet, because he's almost impossible to see. Do you think I should, even though my symptoms are very mild at this point?
I do have appts with the eye doc and the dentist next month, just my regular check-ups, but sooner.
Harlin,
Sorry your visit to the Rheumy threw up more questions than it answered. I wonder what is worse - no diagnosis or so much you don't know where to start! The no appetite thing is a real problem - how about Horlicks and things like that - malt drinks etc.? You don't have to be hungry and they do have lots of nutritional goodness.
Beverley
Beverly
I have been drinking Boost and trying to eat more but I get so nauseated when I think of food or drinking. I see the GI doc this afternoon again. I don't know what he can do but something is not right!! I keep telling all the doc's this but no one knows what to do. I just want to be normal again :o
harlin
Hmmm normality - I'm not sure I remember that. It must have been there once! You do need to find a way to keep your nutrition levels up or you are going to add further complications. Digestive juices with nothing to do are destructive little critters and you don't want to end up with an ulcer as well!
What happens next?
Beverley
Beverly
I went to GI doc and he was very concerned about my weight loss and the fact that I don't feel any better since taking 2 nexium a day. He ordered a Ciliac and Sprue blood test and also a CT of my stomach, abdomin and pancrease. With barium prep and dye iv. It is monday. I don't know if I can get 2 quarts of that stuff down. yeck!!
Am trying to get better but seems to always go the other way!
Hugs harlin
Harlin,
I had a barium meal with dye about forty years ago, and I remember to this day what hard work it was to take it all. You will do it - you will be amazed how necessity boosts your resilience and determination. I will be thinking of you.
Beverley