so on tuesday i had a headache and i took a nap hoping it would go away....not so then i took some tylenol and it subsided. so i sat around playing cards and board games with my family and after they go to leave i get up to tidy up a bit before bed! ok so after cleaning up crayons tha my 2 yr old nephew threw all over the floor i get up and go into my room and i just HAVE to sit down. the left side of my head right above my eye felt wierd like a numb pain?! idk but then my whole left side felt slack so i get up (forcing my body to do as i say) and i go looking for my mom well i go to hollar for her and this TINY voice comes out like i had lost my voice or something. so i finally find my mom and im shaking something terrible because im terrified at this point. she calls an ambulance and they come check me out and tell me that the ER DRs are going to just write it off as the lupus. so i dont go to the ER. instead i go to my GP in the am and he says he thinks its my body withdrawing from the prednisone!! Any one else had this problem with prednisone or even with out it at all?
kam0ra, that sounds scary stuff! I wasn't aware of any prednisone withdrawal effects, sounds to me more like a stroke...or a mini one. Have the symptoms passed now?
Others with more knowledge than me will be along with some answers hopefully
Stay strong :)
I had a similar thing happen 2 years ago. I was shopping and suddenly had the left side of my head and shoulder go numb. I fought to stay on my feet and found my way to a chair. It subsided but my husband took me to the ER (scared him to death). My blood pressure was very high and with blood work found a UTI. They just dismissed it but insisted I go see an internist the next day 60 miles away. I had a doppler of the main artery in the neck. Nothing showed. The nurse in the ER said that is could have been caused by turning my head or looking down and possibly cutting off the blood flow to my head. I have neck issues, so that made sense.
I wasn't on any meds except my bp at the time. All I can say is... with lupus it seems we have unusual things that happen...that are not easily explained. It kept me on edge for a while but gradually I relaxed about it. I am so sorry. I did not have any voice problems. But I so feel that fear you had...I did too. At least check it out with you PCP.
Faye
Faye
This might be related to your headache- migraines can cause some very wierd things to happen
yeah it only lasted for a like at the most 5 minutes but the paramedics said they didnt think stroke because i was capable of talking and there was no drooping in my face and i could understand things
BBAnne said:
kam0ra, that sounds scary stuff! I wasn't aware of any prednisone withdrawal effects, sounds to me more like a stroke...or a mini one. Have the symptoms passed now?
Others with more knowledge than me will be along with some answers hopefully
Stay strong :)
That happens to me when I get migraine headaches. I've been getting them off and on since I was 13 and there is nothing like it once one comes on.
Please see a neurologist if it continues! You CAN go to the ER for pain meds!!!! I've been several times and have received IV meds to control the pain. I also have pain pills for home use.
There is NO NEED TO SUFFER!
HUGS,
Lori
Also, my rheumo says you can't stop taking prednisone all at once. You need to taper down. I've been trying to get off of prednisone for years and can't get past 5mg without horrible pain/inflammation. Right now, I'm on 20mg per day. I started out at 60mg per day.
Lori
You CANNOT go off prednisone cold turkey. It can take weeks or months to taper down. Pred takes over your adrenal glands so quitting all at once your adrenal gland doesn’t know how to work anymore. It can be fatal. Be careful. Tapering down allows your adrenal gland learn to function on its own again. I have never been able to go off my steroids in 22 years. Can’t move or function at all without them.
It also sounds like you had a migraine kicking at the same time. Kind of a double whammy.
I came off my prednisone cold turkey for Two weeks without telling my rheumy. It was horrible. Headaches, extreme fatigue to the point of sleeping 18-20 hours a day, massive pain. Finally realized it was the prednisone withdrawel after telling my rheumy she was quite upset with me telling me I could’ve died. I’m now back on it but tapering off slowly. Don’t know how long it will take since I have been on it for ten years. Moral of the story never stop taking your meds cold turkey without consent of your dr.
Hello to all… REALLY important to see both a neurologist and a rheumatologist, preferably at the same time in the ER, about this type of thing!!! Make an appointment ASAP with a board-certified neurologist, preferably a younger one who will be more current. Read your thorough description in this post to then and answer their other questions, and if they are a competent doc they will at least take a look at what I describe below! Demand that they do or explain why they think otherwise!
It sounds like the classic signs of a new kind of stroke many people (even doctors outside of neurology or major medical centers with the most current knowledge) aren’t aware of (or have not yet accepted validity of… But having recently worked at a hospital designated as a regional stroke center and shadowing a neurologist who showed me these on several patients’ MRIs, they ARE real and THE hot new thing!) Since it’s a new buzz-word, maybe you have heard the name but not the symptoms: TIA, for transient ischemic attack. Ischemia means no oxygen to your tissues, in this case a certain part of your brain (!!!), and it’s transient because it comes on and then passes (probably a clot that breaks up soon after, and the aspirin was likely helpful for that!) However, even though the symptoms lift, there IS lasting damage that accumulates in the brain, ranging from mood disorders and cognitive problems/losses to early or severe dementia. They leave scarring in the brain often visible on MRI, and tend to happen repeatedly and slowly damage parts of the brain all over, as well as leave the same spots where they’ve already happened vulnerable to full-on permanent stroke!
Blaming lupus IS probably accurate, but it STILL NEEDS TO GET EVALUATED AND TREATED because it’s a short-term energency that could strike again, maybe even worse, at any time, and it would be a sign of WORSENING LUPUS! TIAs are a known element of the common but difficult-to-diagnose process of NeuroPsychiatric Lupus activity. This is especially likely (and likeky to keep striking and getting worse) if you have anti-phospholipid antibodies (which you need to be screened for again now even if you have already!), so make an appointment with your rheumatologist also.
Someone mentioned migraines… Yes, these symptoms can overlap with some migraines, but a neurologist needs to evaluate which is which, because it’s almost impossible to tell from the symptoms! If you don’t normally have migraines, I’m highly suspicious that would be it, but even if you do, migraines doing this to you need to get treated and prevented! Or at LEAST monitored. Even if the docs get stumped or stubborn this time, the notes on it for the next time may help save you loss of function (or your life) from a bigger stroke. If you are young and fit, most ER’s will not consider stroke, but if you have lupus, they need to! And for any stroke, early intervention is KEY. Take an aspirin as you get driven to the hospital or call the ambulance!
Please read these articles for more info:
- On the risks of TIA & strokes in young women who think they’re just migraines, in Women’s Health Magazine and reprinted by ABC news, it’s a great read for a general audience with extremely good info (they interview a neurosurgeon I used to work with at the reaearch hospital! He’s a real gentleman of a guy, too, stops and holds doors for people with warm smiles and such! Too bad you have to have major neurological emergencies to see him as a patient… We need more good ones like this in all specialties and primary care too!)
http://abcnews.go.com/m/story?id=15835224
- On the difficulties of detecting and treating NeuroPsych Lupus (NPSLE), from a medical journal directed at other doctors but shows how tricky and important it is, with pictures of MRI and data, plus stats on how common and what to look for (scroll to the “clinical pearls” part for symptoms/diagnosis info.)
http://www.musculoskeletalnetwork.com/display/article/1145622/1396901
If anyone gets stuck on either one, or wants to discuss the details of the data shown, I can answer questions since I speak the language and also plain English (or Spanish)
I feel very lucky having a background to make sense of all this (Bachelor’s in neurobiology and two years of working with doctors doing research on autoimmune diseases, in particular MS and diabetes but also lupus, RA and scleroderma!) and I’m more than happy to share at whatever level you’d like to discuss! Translating and spreading medical/scientific knowledge is one of my main goals in life, and I’m not employed right now doing it due to my own disease activity and brand-new diagnosis… I’m also lucky to live in the same area where the authors of the second article practice (San Fran bay area), so I have an appointment with the rheumatologist (the other is a neurologist) next month for my own concerns about the more psychiatric and cognitive parts of NPSLE (not as life-threatening, but very debilitating and the absolute hardest to diagnose as lupus-related!) I also get to follow up at holiday time with my Seattle contacts in the hospital I worked for 
I’m sad I can’t bring all you to Seattle and “The Bay” for a chance to see these great docs, but I am more than happy to share the fruits of contact with them, progress on my case, and my own reading about it all
Hello Kamora,
I had a TIA when i joined the site and it does sound similar plus Lupus can cause these...they can range from several minutes to hours...it's chronic strokes like i had previous in my 20s which take alot longer.
By definition, a TIA resolves within 24 hours, but most TIA symptoms resolve within a few minutes.
This link is great for explaining.
http://www.emedicinehealth.com/transient_ischemic_attack_mini-stroke/article_em.htm
Love Terri xxx
Hi Kamora,
I hope you feel better with all these responses. Our community is wonderful. Speaking of TIA's, I have had 21 since May of 2010. I am on Warfarin and probably never get off. I am 58, and have had Lupus almost half my life. I also get migraines, they both warrant honorable mention because there both bad bad things.....lol ....Lupus is the cause of it all in my body ...at least I know what is causing it....
Thank goodness I haven't had dementia yet....lol You just take it one day at a time..... I do not take prednisone at all I do not like it .....I had ITP when I was younger and had to take prednisone to keep me alive ....large doses. I saw way to much.... on smaller doses its great (I heard).
Anyway...One day at a time,
Love. Bernice
Hello Kamora,
When your able to can you update we please on how you are now since adding the thread and i'm thinking about you mate.
Love Terri :) xxx