What would you do if you didn't have any doctor's advice?

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Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 7/31/2008 3:18 PM (GMT -7)   
I don't know what to do guys.  I'm hoping my family doc can give me some solid direction tomorrow morning.  But I have the feeling she's going to say, "I just don't know how to help you. What have you done in this situation in the past?"  Well, I haven't had this situation before, so I don't know what to do.
 
My family doctor is new. I've only known her for 6 weeks.  She just this week, got my charts from my old doctor's office.  She's not going to know what to do with me.
 
i need your advice.  20mg of prednisone is not helping the pain, fatigue, lack of appetite, or malaise, sicky feelings.  I can't let this get out of control, but I have to be careful about how much pred I take too.  Keep in mind, I was on 8.5mg last Thursday. Up to 15mg until Monday, and now 20mg for the last 4 days. 
 
Would you go up to 25mg or 30mg of prednisone and see how the weekend goes?  What would you prednisone users do if you didn't have any doctor's advice on this? Oh, and I will only go to the ER if all of a sudden I have breathing, heart palps, or something clearly serious. skull
 
Thanks guys, I will take all advice seriously!
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


mom46
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Date Joined Dec 2004
Total Posts : 8198
   Posted 7/31/2008 4:49 PM (GMT -7)   
Ginny,
   ((Hugs)), I'm sorry your feeling so poorly with no help from your doctor. Are you not seeing a rheumatologist anymore? It's so frustrating when we have to see a new doctor and they don't know anything about us.
   I don't want to give you any wrong advice so I will just tell you what I do when my rheumy is unavailable. Like you I'm sure, you know when you need more pred and when you don't. I have put myself on a pred taper of 30mgs several times over the years. Sometimes it helps and sometimes it doesn't.
  I did a 30mg taper last month on my rheumy's request and it didn't change my labs or help with the fatigue. I have been taking 5mgs for awhile now. She wants me to do another taper now since my ch50 is still low but, I feel like it isn't going to help this time either. For me, I think its time for a new Immunosupressive but I have taken them all except Gold.
   I know this is a tough decision for you and you have to do what you feel will help you. Know that I understand your situation and you will be in my thoughts and prayers. Please keep us updated and take care sis.
                                                        Love, Babs 
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


jhmom
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Date Joined Oct 2004
Total Posts : 2244
   Posted 7/31/2008 5:32 PM (GMT -7)   
Ginny I don't take Pred so I have no advise to offer, I just wanted to give you some (((( hugs )))) and let you know I am praying for you to feel better. You have had such a rough time lately, it's time for you to feel better! Please continue taking good care of yourself and we'll pray this flare ends soon!! Love ya sis
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Davocet (as needed) and magic mouthwash (for mouth sores)


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 7/31/2008 7:35 PM (GMT -7)   
I think I would call my rhuemy and ask for advice or an emergency appointment. If that is not an option (you dont have a rhuemy) I would ask for a referal-probably to the best local university hospital or to the best rhuemy around. I won't offer you advice as to how much pred to take as only you and your doc can decide that but I feel for you.
I hope you feel better soon.
Sj

MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/31/2008 7:42 PM (GMT -7)   
Ginny,
I know the incresed dose of prednisone can cause you problems with the fibro. With all of the serious complications you've had in the past you really have to be careful adjusting your meds. Do take you take any pain meds? Of course, I have found that the pain meds don't help me when I'm having flare related pain. Only increased doses of pred helps me in those situations. If I were you I definitely wouldn't go above 40 without the advice of a physician. Have you tried alternating heat and ice on your neck. I know it's not going to solve the problem, but it may make it bearable until you can see someone. I wet a wash clothe and heat it in the microwave and wrap it inside a towel and put it on my neck. I'm sorry Ginny. I wish I had a magic wand! Please consider going to the ER. Keep us informed! Love and prayers, Judy

AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 7/31/2008 7:46 PM (GMT -7)   
Ginny,

I think I remember your rheumy being away for a while. I can't believe he doesn't have someone covering for him . . . but I've seen others post that they are waiting for their rheumy to return from vacation too.

If your doc can't help you tomorrow and you are still spinning out of control . . . what would be the down side of doing a 40 mg taper??? When you go down . . . you go down big Ginny. You have so much at risk here. Its not just feeling crappy, you have some big issues.

I sometimes feel that we should ATTACK these flares as opposed to just CHASING them. Just a thought.

I hope the doc surprises you and has a game plan.

Keep us posted!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 7/31/2008 8:32 PM (GMT -7)   
Thanks everyone,
 
yes, my rheumy is on vacation.  There is another rheumy in the office, I called and left a message detailing what was going on and asking for an emergency slot, but no one has answered my phone calls. Not much help.
 
I'm really feeling like this is lupus, the way I feel tonight.  Rosie, you're right.  It won't harm me to go big and see what happens. I feel a lot of malaise and fatigue and just feeling icky.  This feels like lupus tonight.  If I go up to 30mg and I feel worse, then I know it was a massively disgusting Fibro flare. mad   If I feel better, I'll be so glad I did it.  :-) I just don't want to do this without the knowledge of my rheumy or pcp.  I want to take extra pred tonight, but I"m scared.  Isn't that weird?  I've never had a problem tackling a flare up before. I just take the prednisone and get her done.  But like you said Judy, my Fibro goes absolutely crazy if I'm on too much pred.  I can't win here. I'm gonna have to bite the bullet and take my chances.  I'll take more pred after I talk to my pcp tomorrow morning..... Decision made.
 
Wow, major anxiety regarding this.  Here's another part of my dilemma.  I have a wedding to photograph on Saturday.  I don't want to feel worse for that!  I'm stuck.  It's a no win situation.  If I feel worse than this on Saturday, I'm hooped.  Sorry to lay this all on you guys.  I'm feeling very needy!! LOL. 
 
Hugs and a good night to all,
Ginny
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/1/2008 8:33 AM (GMT -7)   
Well everyone, it looks like all those prayers really paid off!  I took my 20mg of pred last night, and at 1am I was W I D E awake and in a full on buzz from all that prednisone. Definitely not a lupus flare I was in.  It looks like it was a doozy of a fibro flare.  I've never had one that bad.  I didn't put my steroid cream on my back last night, and I actually had no pain and problems getting out of bed this morning. 
 
My rheumy's nurse called me at 8:30 this morning. She also agreed that it sounded like Fibro and recommended I taper from 20mg down to 10mg today.  If I feel fine, then great!  If I start to feel wonky again, go back up to just 15mg. 
 
So thank you for praying for me.  He revealed exactly what I needed to feel and see and experience last night in order to make the right decision!  I still have to figure out why I have now lost 7 pounds in 3 days..... I'll relay all this to my pcp this morning.
 
Have a good day everyone,
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 8/1/2008 9:46 AM (GMT -7)   
((((Ginny))))) I'm so thankful! He's always right on time!! Keep us informed! Love ya, Judy

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/1/2008 3:33 PM (GMT -7)   
I'm not 100% this afternoon, but I think it's all the residual prednisone from this past week. I hope to feel better tomorrow and the next day and the next!  Thanks again everyone for helping me get through this doozy!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 8/2/2008 7:42 AM (GMT -7)   
ginny, I hope you keep feling better and that the worst of this is all over now. Just don't overdo it now that you are starting to feel better :)
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/2/2008 5:24 PM (GMT -7)   
Thanks Hippi,
 
I am feeling so much better today.  It was all that prednisone that was making my fibro so bad, which made me feel just awful.  I had a wedding to shoot today, just got home. It went great, and I felt pretty good.  But my feet!! BAH!!!!  They swore horrible curse words at me all day.  They're naughty, nasty little feet right now.  Bad feet, very bad!
 
Yes, I will be taking it easy this weekend.  I don't need another flare!  You have a good weekend too!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 8/3/2008 6:27 PM (GMT -7)   
Have you tried Plaquenil. The first thing I noticed was an increase in energy. When my Rheumy took me off it for a week I felt the God awful fatigue come back. It works in the background and takes a long time to kick in, but stick with it. I thought at first it wasn't doing much, until I went off it. UI'm a believer now.

Jennifer

Diagnostic Limbo: Seeing Rheumy since November 07, Taking plaquenil, Cymbalta, Flexeril,Claritin, Zantac,Ambien, vitamin D, Darvocet.

 

 


curlyhair
Veteran Member


Date Joined Jan 2005
Total Posts : 659
   Posted 8/3/2008 7:23 PM (GMT -7)   

Hi Ginny,

I am glad your flare is under control now and that you are starting to feel better. I know you have had a lot of trouble lately so I hope better health stays with you for a while. You certainly deserve a break. Hope your feet are better.

Sandy


DX: Kidney Disease, (? Lupus Nephritis) 2002
DX: Raynaud's Phenomenon and Lupus (SLE & Class V Lupus Nephritis) 2005
DX: Anorexia and Hypokalemia 2006
 
meds: plaquenil, amiloride, klor-con


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 8/4/2008 5:07 AM (GMT -7)   
Ginny,
   I'm so glad to hear you are feeling alot better now! Now you need some relief for your feet and I hope you get it soon....((Hugs)). Take care sis and you are still in my thoughts and prayers.
                                                    Love, Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

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