Forgive me for all my posts..

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Regular Member

Date Joined Mar 2007
Total Posts : 194
   Posted 8/22/2007 7:04 PM (GMT -7)   
I feel guilty for flooding the threads . Here we go with more questions. Why does a rhuemy only treat lupus with low dose steriods? 10mgs for 8 weeks? G-d help me but shoot me in the darn head. I am sick of pain. Typing hurts! I have a new problem too. I went to the GI today for my CD and she saw my blue toes and asked if my rhuemy dx me with  reynods? sp? I said no, I dont have a problem with being cold. She said oh yes you do! your toes are freezing and they shouldnt be blue! My response to that is bite my ass! My blue toes are not my biggest issue! I am freakin hurtin here and your worried about my toes? I dont care if they are black! Fix me alreeeeeeeeeeeeeeeeeeeeeeeeeeady! My Rheumy wants to do cortisone shots in my hips. 3 each side I am scared. I hurt enough and those shots hurt alot! He is mad at me for " refusing" treatment. I am not refusing just put me out of it first and he doesnt do that. I told my PC if they dont get me out of pain , dont put me near a speeding train and she says Chaya! dont speak like that around me because I have to respond to that. Thats the darn idea! haaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa OMG the lupus is worse then the CD. My body hurts so much all I can do is cry and eat pain killers.

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 8/22/2007 8:13 PM (GMT -7)   
Hi Chaya, Don't worry about how much you post if you got questions or rants or just need a shoulder that's what we are here for. As for your pain I don't know any doctor that would knock you our to give you shots. Maybe hypnosis ? In the end it will be well worth it. Also you really don't want to have circulation problems in your extremeities. You may wind up with some pretty nasty open painful sores. Are you on plaquanil? I am on small doses of pred. with large doses of plaquanil. I hurt like crazy for a good 6 months. Now the plaq has started to kick in and I am doing much better. It can take a long time though before the plaq kicks in. When I would get really bad like you are discribing I took an extra 10 or 15 mil of pred and it started working the same day. My doctor tells me on bad days she doesn't care if I take extra. Of course she knows I hate it and overdose would never happen.
I hope you get feeling better soon
God Bless
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I

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Date Joined Mar 2006
Total Posts : 2606
   Posted 8/22/2007 8:48 PM (GMT -7)   
Carol's right. You cannot post too much. You have a great deal to get off your chest and we're here to help you. The doctor was probably telling you about reynaud's because it can help him put all the pieces together so he can treat you effectively. Did you have a frank convesation about why he wanted to give you the shots in your hips? Rather than get mad at you I wish he would have reassured you and talked to you some more about the necessity for the shots. The short term pain from the injections may be worth the long term healing effects.

Hang in there and let the plaquenil take it's time to work and ask if you can take more prednisone. And come back and rant and rave and ask all the questions you want. That's what we're here for.


Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin

Veteran Member

Date Joined Apr 2005
Total Posts : 1529
   Posted 8/22/2007 9:09 PM (GMT -7)   

You got good advice from Okie and Pat. One more bit about your blue toes. That is Raynaud's; it is often seen with lupus and/or scleroderma. (Sometimes "normals" have it too!) Anyway, don't ignore it. Like okie said, you can get bad sores, called ulcers. They can lead to gangrene; some people have even had digits amputated. It is caused by spasms in the capillaries which leads to extremely poor--like zero--blood circulation. You might have it in your fingers/hands as well. Ask your doctor what to do about it.

And DO get those shots. A few moments misery are well worth the weeks/months of comfort they will bring. It will also save the lining of your stomach from all the nsaids and pain killers you are eating! Soaking in a warm tub does help--it's calming as well.

Lots of deep breaths....keeping oxygenated and the muscles as relaxed as possible also helps to ease pain. Thinking of you...

xoxo emmie

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 8/22/2007 9:47 PM (GMT -7)   
Hey Chaya . . . rant away . . . that's what we are here for.

The shots??? Have you had any yet??? They are nothing compared with the pain they will treat. I've had them down my legs, in the wrists, and a series in the spine. If they did give you Novocain first, that would hurt just as much. I'm actually hoping to get a cortizone shot in each hip . . . it would be so much better than the pain that keeps me awake each night. I also use ice packs on my hip pain or a hot bath . . . either tends to help temporarily.

The docs try to use as little prednisone as possible because of the bad side affects. Unless they are treating organ involvement, they tend to use it sparingly. But injecting it in the site of the pain seems to work best and give the longest relief.

I hope your meds kick in soon.

Hugs and blessings!
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
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

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 8/23/2007 7:28 AM (GMT -7)   
Chaya, I can't add much to what the others have already said. I also want to tell you not to worry about posting too much - you can't post too much here. I think anytime someone is first diagnosed you have a million questions which then leads to a million other questions, not to mention the emotional rollercoaster ride you just hopped on.

If 10mg of prednisone isn't helping then hopefully your rheumy would be willing to try you on a higher dose. They want to find the lowest effective dose.

The others are right about the raynauds - it's nothing to mess around with and your rheumy should know that your other doc thinks you may have it. It can usually be managed but it can be serious at times.

Hang in there. Being is constant pain is really terrible, especially if you are feeling hopeless about relief. It can be hard, but if this keeps up, continue to call your rheumy for treatment options. I don't have experience with cortisone shots, so I can't offer any thoughts about that.

We're here for you through all of this. You are among people who really do understand all of these frustrations. I'm sending you lots of gentle ((((Hugs))))
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 8/23/2007 7:44 AM (GMT -7)   
Hi Chaya . . . how are you feeling today?????
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
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

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