Question about Steroids

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New Member

Date Joined Apr 2010
Total Posts : 8
   Posted 5/2/2010 8:45 AM (GMT -6)   
           I hope you all are doing well.  As I previously posted, I just recently received a diagnosis of Lupus so I have been living with this for a while without any treatment. (My PCP refused to treat as Lupus until it was confirmed by a specialist for sure.) A little frustrating but I love my doc so I dealt with it.  Anyway, I was in a really bad flare when they finally confirmed Lupus so they prescribed a medrol pack (prednisolone) to help "bring me out of it" as they said. So I finished the 6 day course and felt great! But, it only lasted about 10 days and here came another flare. Is this the norm that you can flare up again so quickly? I don't know why, but I was under the impression that I would be good for at least several weeks. Just looking for some input since I am new to all of this.

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 5/2/2010 9:31 AM (GMT -6)   
Hi Jennifer, sadly yes it's quiet common. Some people stay in a state of flare forever. At least until you and doctor can come up with a good treatment plan. As much as you like your doctor (which is great) your pcp is no a rheumy. You need both. In fact you need several different doctors. Many of us are on steroids for life. The doctor just bumps up the dose if you are in a flare. Sort of like if you have allergies as long as you stay on your meds you do ok. stop taking them and you start sneezin and wheezin again. Just know that what is going on with you is  not uncommon. You just need to be treated by a rheumy. Take notes tell them what you told us. Many people are on plaquenil which helps keep the flares away. You may not have to be on steroids forever but it sounds like you will have to be on something hang in there

nexium,temazepam,predisone,plaquenil,propanalol,citracal,pottasium, vitB12 ,iron,xopenex,advair,spirivia,soma,Vitamin D, cybalta
Dx lupus, scleroderma, pos. fibro, high blood pressure. COPD, need left lung transplant. cervical cancer survivor, osteoporsis.
"Consider it a pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance." - James 1:2&3

Post Edited (okie) : 5/2/2010 8:34:36 AM (GMT-6)

New Member

Date Joined Apr 2010
Total Posts : 8
   Posted 5/2/2010 10:09 AM (GMT -6)   
Hi Carol,

I have an appointment with a rheumy in June but have been seeing an internist in the meantime. He said he has had great success with plaquenil but wants me to wait until I see the rheumy. I have just been trying to get some help wherever I can because I have a hard time even getting out of bed, much less to work, some days and its just miserable. I think my boss is starting to get sick of me being sick so much but I just can't help it. Thank you for the information...I really hope I don't have to take steroids on an ongoing basis but if that will help me feel even a little bit better I will do it.

Forum Moderator

Date Joined May 2005
Total Posts : 6934
   Posted 5/2/2010 11:44 AM (GMT -6)   
Have you asked the rheumy's office staff if they have a cancellation list? Sometimes you can get an earlier appointment if someone cancels. June does sound a long time off.

Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Forum Moderator

Date Joined Jun 2008
Total Posts : 1469
   Posted 5/2/2010 11:48 AM (GMT -6)   
to be honest, i wouldnt say you are in another probably stayed in the flare, the steriod pack just kept your symptoms low key but it is possible to stay in a flare for years and then others flare periodicly. The good thing about steriods is they work so quick but you need to be very careful with them because they cause so many side effects. You will need to be monitered very closly if it becomes a long term thing for you but hopefully once you take the plaquenil, you will feel better. Just a generally takes several months to notice a difference that plaquenil is making! I sure hope you can catch some relief!!!!

New Member

Date Joined Apr 2010
Total Posts : 8
   Posted 5/3/2010 6:55 AM (GMT -6)   

I think you are probably right. I was just hoping that I would feel better for a longer period of time than I did I guess. I have a cousin with Lupus who was on Plaquenil for a while. The side effects on her digestive tract were too much for her though and she had to stop taking it. I hope I have better luck!

Lynnwood - That is a great idea. I will have to run it by my boss and make sure its ok with him. Sometimes its hard to get time off on short notice because its just the 2 of us where I work so I have to make sure he will be around to cover me. Lets just say he spends a lot of time away from the office lol. I guess thats one of the plusses of being the boss!

Hope you all had a great weekend...we had beautiful weather here in OK. Let me know how all of you are doing.

Forum Moderator

Date Joined Jun 2006
Total Posts : 1531
   Posted 5/3/2010 10:19 AM (GMT -6)   
Hi Jennifer. The first drug my internist put me on long before my diagnosis was Celebrex, an arthritis drug.  There are many other prescription pain relievers you can try. Ask your internist! The pain meds don't help the fatigue, but pain relief is half the battle. The over the counter med I like is Tylenol Arthritis. Another helper is a hot bath with epsom salts before bed. I like laveder epsom salts.
It's too bad your internist doesn't want to start you on plaquenil. It usually takes weeks to work, but when it does plaquenil is a big help. BTW most folks tolerate plaquenil. It's a drug used to prevent malaria and during WWII men with lupus found it stopped flares.
As for the steroids, sometimes when I flare I get a medrol injection plus an increase in prednisone. Even with all that, I often flare when the pred wears off. It's like Amy said, a flare can last days, weeks, months. Keep us posted okay? Love, Butterflake
Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, colitis, stage 1 kidney disease  Lots of meds.  Donna 

Veteran Member

Date Joined Mar 2006
Total Posts : 2570
   Posted 5/3/2010 10:57 AM (GMT -6)   

If you click on my name, you'll find my email address. I see a rheumy who's with Mercy and who's office is on North May just south of Britton. He trained in OK but moved to Texas and practiced there until he returned to Oklahoma City a year ago. He has since been at Mercy, but since he's relatively new in town, he's pretty easy to get into. It might be worth a try to give his office a call. He's the best of the five rheumies I've seen. He's thorough, compassionate, knowledgeable, and has me feeling better than I have in seven years. And I've only been seeing him for about six months. If you want to look into it, send me an email and I'll give you more info. If you like, I'll give his office a call to make sure he's taking new patients and find out how far out his appointments are.

I concur with what the other folks here have said about prednisone. Plaquenil gave me stomach problems for the first three months or so but I stuck with it because at the time I was so desperate to feel better and it has been worth it. Many if not most of us stay on Plaquenil for the rest of our lives. I have absolutely no side effects to it now.

SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lunesta, cymbalta, vitamin D, Calcium, Multi Vit.

Veteran Member

Date Joined Apr 2006
Total Posts : 1296
   Posted 5/3/2010 9:35 PM (GMT -6)   
There are no short term treatments for lupus.  Short term steroid treatments are usually effective in the short term but do little to change your immune response over the long term.  In fact, frequent short term treatments seem to encourage the up and down of no symptoms followed by another flare.  Treatments should be individual and tailored to a long term plan which hopefully can exclude prednisone except for strong flares if necessary.
Auto immune diseases cannot be cured although some patients do go into temporary or permanent remission.  Taking meds for a few days and having no symptoms for a short time might be worse than no treatment at all.  If you are going to "tame the beast" it can take many months or even years to do so.  Some patients can never do it with or without meds.  I have been on some type of controlling meds for almost 5 years and hope to be off all of them soon.  But the bottom line is that after a horrible initial attack I have been symptom free for over 4 years.
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
Remain optimistic and you can overcome the odds.

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