[MichelleAnn]

I had a Flare-Up one of my scariest. I had no idea what hit me. Normally they build over a week or a few days and I feel one coming. This one nailed me and I was comatose almost on the sofa for 5 days before I could drag myself to find my prednisone and start 60mg. My head was going to explode, my head burned, numbness down my face, my breathing was difficult, a horrible burn inside them with a stabbing pain. The pain in my joints was so overwhelming, my entire body I could not move. My speech was stuttered if I could talk at all. My legs weak. Like I said I layed almost comatose for 5 days before I had to get relief. I almost called an ambulance Tuesday nite but could not get or move to find the phone. I needed relief. I was trapped in my body unable to move but I heard everything. I just concentrated on breathing. The fatigue, I could not move. I started Prednisone 60mg Thursday and today is Friday (had 2nd dose). I feel like a new person. Still not sypmton free but able to get around. Has anything like this ever haopen to anyone here? This is a first for me to have an accute flareup. Please let me know if this is normal. I see my Rheum. doctor on Monday. This was scarey. :worried:

 

[Katharine]

Hi there,

That does indeed sound extremely frightening! I take it you live alone?

I haven't had anything like that happen, thankfully for me. I'm glad to hear you're seeing the doc on Monday. He/She definitely needs to know about this.

I hope you continue to feel much much better and that it never happens again.

:hug:
Katharine

 

[JudifJ]

Hi

I had a big flare almost like yours back in 2002 which put me in hospital for a week. The only warning I had was a "spaced out" feeling for a couple of days then I had a stroke like episode. The next day I collapsed in my GP's office and he called an ambulance.

I am so sorry you have had this happen like this. Were you home alone? It must have been awful for you. I am glad the pred has started to kick in. Do remember to tell your rheumy all the details.

Thinking of you.

Judi xx

 

[Joandublin]

Hi Michelle

Im glad you are seeing your Rheumy on Monday. You need to talk to him/her about what to do if this kind of situation occurs again :worried:

If you are living alone you really should consider a medical alarm system that can alert someone to the fact that you need help. Personally I have never experienced that type of comatose situation for as long as you describe. The nearest I came to something like that was a full day when I couldnt move, think, drink or eat and I really didnt care what the heck happened to me. I would dread to think I would have five consecutive days of that intensity.

If you are self medicating these episodes, make sure your Rheumy knows what is going on. I hope to goodness you get better soon

Take care and let us know how you are
Joan:rose:

 

[halfpintfl]

Hi Michelle, how absoutly awful for you, I have never heard of anything like that. I do wish for you that you never have to go thru that again.
I am sorry, but I don't know if you are dx or not, but it really doesn't matter, were you told to self-dose your Pred.? Make a long list of every-
thing that you experienced, what you did and did not do, how each day felt etc, and give it to the dr. on monday. Do let us know the outcome.
Please take care of yourself, cuz generally, no one else will.

 

[mysharonna]

Hi Michelle,

That sounds absolutely terrifying. Sorry to hear you are feeling so poorly, glad the pred is starting to kick in. I would write down everything that happened and bring it with you, so you dont leave anything out while explaining to doctor.

Hope you are back to you old self soon. :getwell:
Sharon

 

[Karin1]

Whoa!! How awful!! All I can offer is huge, "gentle", (((hugs))). I'm glad you're seeing your doc on monday, and I hope this weekend you continue to improve.

Please let us know how your docs appointment goes!!

Karin

 

[MichelleAnn]

Thank you for your replies. I am doing a little better, the prednisone helped the joint pain and other things its just the back of my head/neck spreading to top of head feels like there is so much pressure that I need someone to drill a hole into it to release it. I do live alone with my 2 teenage children who worry terribly. Being teenagers and they work jobs, etc and go to school they are not home much. They do check on me. Its scarey because I lost my mom a year ago and have no other family. I am the last besides my stepdad who is 73 and my sister who lives 4+ hours away. I am diagnosed with Lupus for a year now and started with symptoms 3 years before that. My doctor told me what to do if I have an episode and how to take the steroids. She usually wants a phone call etc but she was out of office so I made appointment for Monday when she is back. There is no way I could of went to her office last week with how I felt. The quickness and extreme of this flareup hitting me overnite was what was so scarey. I at first just thought maybe I was getting sick but after a few days of laying there nothing hit me but my lupus symptoms. Thank you so much for caring!!!

 

[karen.w.]

(((((michelle)))))

I'm glad you're feeling a little better..however the pain in your head/neck sounds awful! if it goes any worse I would go to the ER.

your flare up sounds terrifying I've never felt that bad & I have had lupus for nearly 15 years..sorry I don't mean to scare you!maybe you also have an infection?

are you on friendly terms with your neighbours incase it ever happens again or any friends who live close by?
I'm so sorry to hear you lost your mum last year :hug:

I hope you feel better soon
good luck with your appt please let us know how you get on.
take care..karen x

 

[Bullwinkle]

Without me going into it: just something to check on....there is such a thing as a prednisone coma. It can happen if you have been taking more than 5 mg. of pred a day (usually with much higher doseage) and suddenly stop. Death can be a result so please be informed of this. That is why we have to taper off of prednisone very slowly especially as we near the 5 mg. mark when the body reawakens and starts producing it naturally.
Take care my dear and everyone else.
Ps: hats off to the Moderators who work so diligently to keep us informed and in line. lol

 

[JudifJ]

Hi Michelle
How did you get on with the rheumy? I hope you are feeling heaps better now.

Love Judi xx

 

[MichelleAnn]

I went to my RHeumy on Monday. She told me it could of been many things that caused my severe symptoms. More than likely lupus related but we may never know since I did not go to the emergency room. She did lots of blood work but being on 60mg Prednisone 4 days before I saw her the tests will probably be inconclusive. I did learn a lesson with this acute flareup. I talked to my children about it and also know I must call an ambiulance if it happens again. This was something that never happened to me and I could not of expected it. She told me an MRI may of showed something but was unable to get me one within a day or two so that was out of the question. It was a lesson learned and I hope all who read this realize things can come on sudden and not in the normal of our usual progressing flareups. Thank you. I will keep you informed if any blood work is abnormal. Ive been off all prednisone for 5 months now, I was on a maintenance dose of 10mg a day for a year and major flareup free. She said I may need to be on 10mg or even 5 if I can tolerate it indefinetely. I am thankful all is ok now and dealing with the side effects of the prednisone now. Its a miracle drug when u r real bad but then as I get better I am not sure which is worse, the prednisone or the flareup. Hugs and Kisses this Valentines Day!!

 

[helloos]

I am sorry that you were feeling so unwell and yes that sounds very frightening. I like Joan's idea about the alarm.

I am glad that you are feeling better and that the meds are working.

I will pray for your continuous wellness.