So I decided to try to wean off the steroids esp since that terrible rheumy said i’m fine & nothings wrong w/me. Bad idea. Yesterday I had to have a biopsy of my lymph nodes because they r enlarged on my left side & have been for awhile w/no known infections. Surgeon called & said no Cancer appears to be due to Lupus inflammation. I nvr knew Lupus could cause inflammation in lymph nodes. So I have a rheumy who says i’m fine & other doctors saying I have Lupus. I have had my brain, eyes, glands, joints, muscles, bladder, menstrual cycles, lymph nodes & possibly heart affected; but since i’ve been on meds “500grams of solu medrol (which the rheumy said is a large dose) monthly for over 2 yrs, been hospitalized 6x over past 2 yrs for a week at a time receiving massive amounts of solumedrol each visit & am on immunosuppressive” my lab work has changed & is always negative. I read on internet that being on the massive amounts of steroids could affect my lab results. Does any one know if this is true? I am trying to get a new rheumy. She’s the best in my area but booked up. I have to prove to her I am in need of her help. Crazy!!!
sry I forgot to add in the past before all the meds I had 2 positive ANAs. Since all the treatments my ANA has been negative lately. I recently spoke to a lady that had been misdiagnosed w/lupus for 4yrs & she went to the Mayo Clinic where they did thorough testing & discovered she had an autoimmune disease that wasn’t lupus. I didn’t realize there are hundreds of different autoimmune diseases. Getting so frustrated as i’m 36 & want my life back. I dnt want to be sick anymore & lately i’ve started back flaring again likely due to stopping some of my meds!!! 
Hi, WOW, a Rheumey said youre fine? Did they do ANA & SED RATE labs? Those should be a must. I do my monthly labs and based on what Levels those two ard at determins my Prednisone & Methotexrate injections I have to inject myself. I have a Rheumey who orderex labs but my Primary Dr is who orderdd Standard Lab work. He calls me in 24 hrs my Rheumey just perscribes, . My Lab Levels sky rocketed last 3 months I dont even think he knows.
Lupus is like other auto immune disorders that you have so many side effects.
I never have taken your meds,
I hope you get better Dr’s. It sucks being scared having Lupus then go thru what you are going thru.
Whatever you do, never try wheening yourself off steroids. I know what high. Doseages do to us, its an emotional & mentally roller coaster.
I was on 160 mgs of Prednisone in 2009, I had finally been wheened off by Dr then BAM out of remission back on steroids.
There ard so many things Lupus affects, if its Systemic Lupus Erethomosis, it effected your functioning organs.
@Bozz63. Thanks for the advice. I suggested weaning me off to my doctor after my rheumy said nothing was wrong w/me. My doctor is weaning me off. Solumedrol is a strong liquid steroid that I have injected through a mediport. We dn’t have any rheumies in the town I live so I have to drive almost 2 hrs to one. My neurologist here administers my treatments & my GP & Neurologist prescribe my meds. I have had a sed rate done but I think that was a while ago. I dn’t know what all the surgeon found from my lymph node biopsy but whatever He found it pointed towards inflammation & lupus. I looked online & it said a cause for enlarged lymph nodes can be SLE. None of the other causes were applicable to me. there is a rheumy an 1 hr away from me. She is one of the best in the area but she stays booked up. Her office said she isn’t taking new patients. I told them that I really need help. They told to gather all my med records & she’ll take a look at them & consider taking me as a patient. I’m praying she does. 
Praying its not anything serious. Please keep me posted.
I have also read that medications (steroids and chemo drugs, especially) can cause a positive ANA to revert back to negative.
My ANA is almost always negative. You need a doctor who will not rely solely on lab tests, but also symptoms. If you can't get in with the Rheum you want, try to find a good internist who treats Lupus. My internist treats mine, since I fired my Rheum. He does a better job than my Rheum ever did.
http://www.hopkinsarthritis.org/ask-the-expert/positive-ana-turned-negative/
Best of luck,
Sharon
Yes steroids can effect labs. I had a gp put me on them for upper respitory infection and rheumy was not happy because she said there was no point in running labs until steroids were out of my system. It sounds like you are having a time of it for which I am sorry. I wish you luck on your quest for help and answers.
How is that possible for them to monitor you blood count then. I have never hesrd of “Cant do lab until steroids are iut of your system” So basically in your situation how will they draw blood?
I have been on Prednisone (steroids) from over a year this. I got so sick I am thankful Im alive. 360 mgs, and wheening dow at now 5, I would be @ 2 but in my lab my Sed-Rate & ANA count went up.
I have blood drawn every month on steroids. Thats how they can tell if you are having a flare, blopd in urine, your white & Red cells coun is .
I am glad my GP monitors me by Standard Orders monthly.
Im blessed he is my GP.
In both of ypur sotuations I would get a second opinion. You need lab work. Besided all medications espcially organs, you can die before the steroids come out of your system by not doing lsb eork is basically saying how lazy or unedicated that statement is.
How they were able to diagnoise ud was Thru lab work and my GP & I have a goal “Remission” its based on knowing my cell count, ANA & SedRate is. God Bless you and Good Luck in this journey.
Rheymeys are ones who experiment RX wise, in anyones illness. My GP is brtter st monitoring than Rhumey who just perscribes, he is not monitoring mr as he should, he gets my results, its my GP who does. I get my lab results next morning before his pratice opens @ 8:30.
Latasha,
I have NEVER had a positive RA result or the lupus (whatever they call it). It took a kidney biopsy to determine that I had lupus class 3 &5, lupus nephritis (stage 4), and now my new rhuemy tells me I have a very "robust" case of lupus, fibro, the nuero says I have the type of lupus that clots my arteries and what caused my stroke and several ICU visits for pnuemonia.
Point is, a blood test is not always going to give you or the doctor the answers. I would ask for a biopsy to actually look at the cells. Not every get kidney, lung or brain issues (only the very lucky, lol) but those are the things that will kill us if not taken care of. 6 times over 2 years is very often.
Take care of yourself, get a new doc if necessary. This is a lifelong disease so you need someone you can trust.
Best wishes,
DeAnne
I'm having a lot of difficulty focusing well enough to read much today, so if I repeat anything already stated by someone else it's not intentional...
Yes, of course steroids (and Plaquenil) can lower your ANA score. Steroids in particular are an anti-inflammatory - it's primary purpose, in fact. Steroidal immunosuppression is technically a side effect, albeit a beneficial one for people with an over-active immune system. The ANA, the CRP, and the ESR westergren (sed rate) are all non-specific inflammatory markers. This is why there is no such thing as a "positive for Lupus" test result. They're not Lupus tests, and there isn't one. Those markers will be elevated with many types of inflammation, including an infection. That is the reason for multiple positive ANA results, paired with other labs, being necessary to diagnose an autoimmune disease. If it's transient, it could have been anything and not chronic. As these medications do their job, your inflammation SHOULD reduce. When it does, those results will usually reflect it. Some people always score highly positive on the ANA. For them it is a much easier diagnostic road. For a very large percentage of us, that is not the case. Some are seronegative, and never show a positive result. That's less common but it does happen. The meds can certainly create that situation. Unfortunately, some numbskull Drs think that's an indication that you should be taken off of those medications. While it's important to reduce steroidal medications whenever it is possible, without causing detriment, it's equally important to monitor tests to make sure it is not causing more harm than good to do so. That's when repeat ANA, CRP, sed rate really should be done. Especially if you're experiencing an increase of symptoms.
It took two years on Plaquenil to make it happen in my case. My ANA did indeed drop though. My CRP and sed rate were almost non-existent. I hit remission. I'm not really in it right now, and I have had an increase of pain due to 2 major surgeries and a loss of household income and health insurance.. the stress was too much for me. I will still say that I'm in better shape than I was 2 yrs ago however, by far. I have no idea what my labs would tell us right now. I can't afford to find that out yet.
You shouldn't have to prove anything to a physician. If you feel that way, it's time to move on. Don't let a Dr drag you down emotionally, and don't let them hang up your valuable time and energy over this. You don't owe the Dr any of your spoons. Period. They are a paid service, and their job is to assist you. If they're not assisting you, show them the door. FYI... a rheumatologist isn't the only one qualified to dx Lupus. They want you to believe that, but it can come from someone else.
Lupus can affect ANY system in your body. It primarily resides in the integumentary system, which is skin, hair, and nails, and it is a connective tissue disease. It does not however discriminate, and it can manifest anywhere at any time. Your immune system is after all tied in to everything in your body. Otherwise it wouldn't be able to do it's job.
Thanks for all the help everyone! God bless & much love.
Tala very well stated. A dermatologist ran those tests as well as CHC, then from there got results, went to GP Dr who gave me a name of a Rgheumey, one was booked, so I called the next one who saw me same day. I took Plaquenille, so Optamologiest every 6 6 months. There is onky I book test for that and is an Android application. The Plaquenille did cause my color blindness, but its one ofthe safest. 360 mgs of Prednisone, few years ago, 2 mgs now back up due to my high levels. Rhumey wanted me on plaquenille. But he felt it could cause more harm to my vision. Ive also been told I have RA,Rynards & Bellows Phempigoyd.
Thank you for info. You stated very important info here.
Not to sound harsh or blunt. you need to research all the different infusions you can get besides sol u med. myers infusion , benlysta . You need to take your symptoms and grind the web. read reviews. and demand your rhumey try new things. arm yourself with all you can beforehand . All us suffering from SLE are snowflakes all us effected differently . log your pain, fatigue , anything that makes you uncomfortable. I do a log 2x a day. if what you take ain’t working, try other stuff. But like i said speak up to the rhumey , show him/her your armed with the info of what is out there and what kind of results you want. and if they disagree find a new rhumey . waits are the worst. i waited 6mos to get in to see my current one. then when i went to first appt i was there from 8am till 4pm. worst 6mo of life. worst day waiting. but was worth it. I pretty much run my own med and infusions. and i am finally seeing improvements. small but better then none… sorry if i have come off rude not my intention . with 97%of rhumeys you have to be firm with them and throw them off rude with knowledge of treatment options.
my current treatment regiment
Palquinel 200mg 2x day
prednazone 40mg 2xday
AzaTHIOprine 50mg2x day
mobic 7.5mg 2x day
celebrex 200mg 1day
methotrexate 250mg 1week
benlysta infusion 1x month.
i know if i never researched and presented what i knew was out there i would prob still only be on prednazone , Palquinel and doing the sol u med 2-4 a month. Have not needed sol in 3 months and all my symptoms are slowly impruoving. i hope and pray the best for you. keep us updated . please SPEAK up to your Rhumey
I got really sick this morning w/pain & swelling around port to the vein the port is attached to. I called my doc. She told me to go to hospital immediately & have them call her. I got a female ER doctor & she was really good. I was hesitant to go after my last visit. She drew blood from my port & my arm. I was having a severe flare pain, stiffness, fever blister, my cycle even started again makes 3rd one in 1 1/2 mths, blood is thick which I now know lupus attacks the blood as well. I felt really really sick. Bloodwork shows no infection. White bloodcell count is down & BP is low. Doctor said the biopsy triggered a severe flare of guess what she said “Lupus”. That darn rheumy was wrong. Weaning off the meds was bad idea & now my body is under full blown attack. I didnt want to be admitted. So starting back up the oral steroids. My doc wants me to call tomorrow & come in to see her. On my way home I continued to flare. The lupus has made the lymph nodes in my neck swell up as well & to the side of my neck. I was doing well for all those mths listening to the bad advice of that rheumy has set me way back. Now the lupus is back w/a vengeance. This sucks so badly!!!
@ Chris u weren’t rude at all. I actually ran into a friend who has RA she goes to the same place I go for her rheumy. She had the exact same complaints. So i’m definitely going to find a new rheumy this week & after everyone’s help I went to the ER ready. When doc started drawing blood I informed her that I have been on long time massive doses of steroids & immunosuppressives & they may affect my lab results. & she said yes that is correct. I cldn’t believe it. But then the white blood cell count showed the disease is active again. I have been gathering info, getting books & searching internet. I have to start writing things down tho because since the lupus attacked my brain which mimicked a stroke my short term memory is bad & my thought processing has slowed significantly. So thank u for the idea. Be blessed everyone. I thought I had kicked lupus butt but now it looks like i’ve got to fight some more. Believing God didn’t bring me this far for nothing. Trusting I will get through this flare w/minimal damage!!!
My Rhumetologist Dr. only puts me on Steroids for 30 days at a time then he stops it and rechecks my labs to make sure that it is not damaging my immune system. I had a cousin who was diagnoised with Lupus at the age of 9 and was placed on steroids for years and years and they destroyed her immune system which left her defensive against Cancer because she had nothing to fight off the disease with naturally. She died at the age of 49 from complications from her Lupus. I not understanding why your Dr. is letting you stay on Steroids so long, they will weaken your immune system leaving you open to contract Cancer.
I am ANA negative. Always have been. However there are some specific antibody tests that almost always only show up if you have lupus like the anti-dsDNA, anti-sm, anti-ro, anti-la. I have all the antibodies and a high CRP plus all symptoms except kidney involvement. You need to have your doctor check for the other antibodies. Lupus is so unique for each person they can't just stick you in a text book and if you dont match old criteria say you don't have it. I would definately get another doctor. Also be very careful with getting off the steroids too quickly as you can get really sick and go into a big flare. I speak from experience. I was so scared of the steroids I took myself off and ended up in the hospital from it. Now I am working with my Rheumy to get up to a beneficial dose at the least amount of miligrams. Well, good luck to you and I hope you are better soon!
Oh and do you by chance have Sjogren's? That can cause gland swelling, hard knots in salivary glands and dry eyes and dry mouth.
Well said Tala. You've made your point clearly. I haven't had pos ANA or Ds Dna since being on the Plaquenil. My Rheumy is excellent. She understands that lab values don't always show the whole picture and treats the whole person. 7 months ago I developed peripheral neuropathy. I've been on high dose steroids, IVIG and now cellcept. I continue to have neuropathy. We're hoping to calm down the lupus and prevent further issues. Throughout all of this, my only abnormal lab was a low wbc. It can be complicated.
Tala said:
I'm having a lot of difficulty focusing well enough to read much today, so if I repeat anything already stated by someone else it's not intentional...
Yes, of course steroids (and Plaquenil) can lower your ANA score. Steroids in particular are an anti-inflammatory - it's primary purpose, in fact. Steroidal immunosuppression is technically a side effect, albeit a beneficial one for people with an over-active immune system. The ANA, the CRP, and the ESR westergren (sed rate) are all non-specific inflammatory markers. This is why there is no such thing as a "positive for Lupus" test result. They're not Lupus tests, and there isn't one. Those markers will be elevated with many types of inflammation, including an infection. That is the reason for multiple positive ANA results, paired with other labs, being necessary to diagnose an autoimmune disease. If it's transient, it could have been anything and not chronic. As these medications do their job, your inflammation SHOULD reduce. When it does, those results will usually reflect it. Some people always score highly positive on the ANA. For them it is a much easier diagnostic road. For a very large percentage of us, that is not the case. Some are seronegative, and never show a positive result. That's less common but it does happen. The meds can certainly create that situation. Unfortunately, some numbskull Drs think that's an indication that you should be taken off of those medications. While it's important to reduce steroidal medications whenever it is possible, without causing detriment, it's equally important to monitor tests to make sure it is not causing more harm than good to do so. That's when repeat ANA, CRP, sed rate really should be done. Especially if you're experiencing an increase of symptoms.
It took two years on Plaquenil to make it happen in my case. My ANA did indeed drop though. My CRP and sed rate were almost non-existent. I hit remission. I'm not really in it right now, and I have had an increase of pain due to 2 major surgeries and a loss of household income and health insurance.. the stress was too much for me. I will still say that I'm in better shape than I was 2 yrs ago however, by far. I have no idea what my labs would tell us right now. I can't afford to find that out yet.
You shouldn't have to prove anything to a physician. If you feel that way, it's time to move on. Don't let a Dr drag you down emotionally, and don't let them hang up your valuable time and energy over this. You don't owe the Dr any of your spoons. Period. They are a paid service, and their job is to assist you. If they're not assisting you, show them the door. FYI... a rheumatologist isn't the only one qualified to dx Lupus. They want you to believe that, but it can come from someone else.
Lupus can affect ANY system in your body. It primarily resides in the integumentary system, which is skin, hair, and nails, and it is a connective tissue disease. It does not however discriminate, and it can manifest anywhere at any time. Your immune system is after all tied in to everything in your body. Otherwise it wouldn't be able to do it's job.