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Regular Member

Date Joined Mar 2006
Total Posts : 147
   Posted 9/5/2007 4:47 PM (GMT -6)   
My last rheumy visit was on July 26th and everything went fairly well. I decreased my Cellcept due to my WBC being low and my hair was falling out at an alarming rate. So my rheumy decided to cut back on the Cellcept from 5 capsules twice a day to 4 capsules.

Which I do believe I was taking too much. Because since the decrease, the hair loss has slowed down and I'm actually getting a few baby hairs coming back in. From my lab results, my WBC is back in normal range and just over all improvement in the rest of my labs.

I saw my rheumy today and we discussed the treatment plan for the month. Originally, I am supposed to get my rituxan treatments this month as well. She's actually going to a seminar tonight to discuss rituxan and learn any advances or updates on it. So she didn't want to schedule it just yet, just in case there might be any new clinical studies or information regarding the treatments since it's still all fairly new.

So, she was going to call and update me if she finds out anything new. Or else we might just hold off. But since my labwork was looking okay. We are going to try and taper the prednisone again. Which I have to admit that I'm a little nervous about.

I'm currently at 7.5mg and we're going to try 5. But I've never been able to tolerate 5mg at all. The last time I tried, I was so sick that couldn't eat or keep any food down not even water or else I would throw up. It was horrible, but once I bumped it back up I was fine. So I'm keeping my fingers crossed that I can tolerate it. I just haven't had very good past experiences getting down to 5mg.

I also visited my ophalmalogist yesterday about the chronic chalzions that I get. I saw him a few months ago and got the kenalog shots on my eyelids to see if it would help. The one in my left eye completely disapeared and the one on my right eyelid remained. So I went back to try the shot again to see if it'll help.

Instead of one shot, he ended up doing three injections in hopes to aleviate the chalzion. It may take 2-3 weeks for me to notice any significant difference. The shots hurts like hell, but if it works it'll be worth it.

So, all in all. I'm hanging in there and I'm just keeping my fingers crossed that everything goes well with the tapering prednisone, chalzion on eyelid, and of course I'm hoping all those baby hairs are here to stay and it continues growing!!
I was diagnosed with Lupus with Antiphospholipid syndrome in Nov 05.
Current list of medications includes:
Cellcept 250mg/4 capsules twice a day, Prilosec 20mg/1 capsule once a day, Plaquenil 200mg/one tablet twice a day, Metoprolol 25mg/half tablet twice a day, Prednisone 7.5mg/one tablet once a day, Coumadin as directed, Tetracycline 250mg/ two capsules twice a day, Midrin as needed for migraines, Magneseium supplement daily
-Avita cream, Clindamycin lotion, triamcinolone ointment daily to control skin rashes.
-Rituxan infusions twice every six months in March and September

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 9/5/2007 7:35 PM (GMT -6)   
Hurrayyyyy for baby hairs!!!

Sorry you are having such a rough time . . . . YES! it would be scary to taper to a level that has never worked.

Would your doc let you taper more slowly . . . like 5 one day and 7.5 the next day for a week and then 5 for two days and 7.5 on he third day etc. It might be that a more gradual decrease would be less obvious to your body.

I hope the eyelid clears up . . . that would be great too.

Keep us posted!

In His Grip,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
Co-Moderator Lupus Forum
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's
Clickable Links:   Healing Well:  Lupus Resources
Lupus Foundation of America (LFA) Facts and Overview: Lupus.Org
Criterea for Diagnosing Lupus:  Lupus Criterea 
Find a Lupus Foundation Chapter near you: Lupus Chapter Locator

Regular Member

Date Joined Jul 2007
Total Posts : 261
   Posted 9/6/2007 2:21 PM (GMT -6)   
Hi, Heidi. I'm sorry you've been having such a rough time of it. I completely understand your worries with the next taper. If I were you, when you talk with your rheumy again; you might express your concerns over the 5mg and go over exactly what you fear coming back. I have read from several sources, that once you drop below 10mg; it is wise to only taper by 1mg at a time. Then once you reach 5mg, you might even have to drop by half mg amounts. I am currently taking 9mg prednisone daily. I talked to my rheumy on my last appt. about why I was so worried about going to 8.5mg. (That is when the heart attack feeling comes back in my chest...and it is unbearable!!!) I asked him if we went from 9mg to 8mg prednisone, could we do the taper every other day as I've read this helps your body adjust better to the taper. He agreed and said we could try it like that. Just talk to your rheumy, maybe she will work with you to make it a little easier. Good luck.
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 9/6/2007 2:34 PM (GMT -6)   


   I hope you will be able to tolerate the taper in pred this time...((Hugs)). It's good to hear that the decrease in CellCept is helping with your hair regrowth and WBC.

   Hang in there and update us when you can. You are in my thoughts and prayers.


 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
mirapex,advair,foxamax,donnatal,folic acid.
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

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