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Rough year, update on what happened....

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Posted 9/24/2007 2:18 AM (GMT 0)
Hi everyone.  I can see there are a lot of new members here.  I look forward to meeting you all and getting to know you.  All my old friends are still here too.  What a relief!

 

I've been away for a long time.  I guess I needed a major break from talking about my lupus and all its cronies.  I was into such a great remission that I didn't want to talk about the disease at all.  I needed to feel normal for once. What is normal by the way?:)

 

In December of '06, my seizures became unmanageable.  My medication wasn't working and I was having 4 or more simple partials every day.  People were beginning to know when I was having a seizure too.  They weren't the undetectable variety I was used to having.  So in June of this year, I was put on a new medication.  Lamictal.  My neurologist said that there was a 1/100,000 chance I'd be allergic to it.  Well, this IS me we're talking about.  I should have bought a lottery ticket.... I had a horrific reaction to it, 8 days after I started taking it.  The first 7 days were great.  No seizures!  Then all heck broke loose.  I had a fever of 105 and a rash that covered my body, and was actually inside my body too. I came within minutes, the doctors said, of falling into a coma.  They fully expected me to be in the ICU, but miraculously, I was spared that. 

 

Hubby took me to the ER and within seconds, I was on a gurney with an I.V., and massive doses of prednisone being pumped into me  to combat the reaction I was having.  I don't remember most of my first 3 days in the hospital.  That freaks me out still when I think of that.  I was in the hospital for a week.  The fever took 3 days to go away and the rash, well, here's the story.....

 

When I got home one week later, I had dropped a whopping 20 pounds.  I had suffered INCREDIBLE diahrrea during that hospital stay because the rash that was inside my body attacked my stomach and bowels.  It also hit my liver.  I was a mess.  I spent the next month recovering and the recovery was going very well.  The rash on my skin peeled like a sunburn and it took 2 months to go away.  The rash inside took about as long.  I'm just now free of it all.  I've put 10 pounds back on too.

That whole time, even the recovery, which should have taken much longer I was told, didn't make my lupus flare up!  It was incredible.  I thought I was going to be a-okay.  The only issue I had was that my blood coagulation (thickness/thinness) was all over the map.  My blood thinners were "freaking out".  I figured that wouldn't last too long.

Well, I'm still having trouble with the coagulation.  I'm getting poked twice a week (for 3 months now), because my INR goes from 4.1 to 1.1 in 3 days!  Those of you on warfarin know what I'm talking about!  NUTSO!  I'm at my wits end with this.  It's controlling my life.  The other thing that started 2 months ago, is hair loss.  Major hair loss.  I've lost 2/3rd's of it now.  Good thing I had hair like a lion's mane, or I'd be bald for sure right now.  That is very discouraging.  The docs say that because of the trauma I went through, hair loss is very common.  It's temporary, but no one knows when it will stop.  I'll be bald by Christmas if this continues..... That makes me very sad.  Very, very sad. 

 

I do have good news.  News that is incredible!  I haven't had a single seizure since June 12th! Not even an aura!  It's a miracle!  For some reason, my "reset" button was pushed!  My neurologist has no explaination for it at all.  He said divine healing.  I should say so!!  So that is something I am hugely grateful for. My liver is better than it has ever been too! My GGT, ALT, ALP are all normal. They've never been normal!

 

So last week, I woke up with a massive butterfly rash on my face.  I never get those.  I felt pretty crumby too.  So up went the prednisone again and well, my remission state is over.  I'm exhausted from all this.  I have bags under my eyes and I'm just so tired of all the complications. 

 

I have been wanting to write to you all for a while now.  I just still didn't want to talk lupus.  I wanted it to all go away forever.  I know that isn't going to happen.  I'm trying to stay hopeful and positive.  It's very hard most days, especially with that constant reminder of "you're not well".  The blood tests, pills, hair all over the house..... Does anyone else hate the reminders of what we have to live with?  I feel very alone in all this.  No one understands what it's like to live in this body I have.  I went through this allergic reaction which was bizarre to say the least.  I just feel so weird.  I have no other word to describe it. 

 

So that is what has happened this year.  The early part of the year was a mixture of anxiety and depression. Which I"m not going to get into.  I'll spare you all from that!  I need a break.  I also needed to get this off my chest and talk about it. 

 

Thanks for listening.  If anyone has had a drug allergy like mine, I'd really like to hear from you.  It's rare, so I feel quite alone.

 

Love to all,

 

Ginny

Posted 9/24/2007 2:43 AM (GMT 0)
(((((((((((((Ginny)))))))))) OH my gosh, you were writing this while I was writing to you!!! I have MISSED you So much . . . but I was sure that you must have been feeling well to be away so long. I was gone for a long time too as I had a wonderful vacation from AI disease (more later). I'm so sorry all of this has happened to you dear sister. You have always been such a blessing to me in the early days trying to figure our my health issues. You were just a Godsend. To read all that has happened to you just breaks my heart. Ginny, your remission from several issues is incredible. It just really makes me KNOW that there really IS a "reset button". . . if the docs could only figure out how to duplicate that. I had been dealing with all my same issues for way over a year and was taking long term MTX with all the other junk (10 prescript ions) that we end up taking and in Dec 06 I cam down with horrible vomiting and D. I just could not look at a pill and had to stop taking my meds while I was constantly voiding from both ends for over three days. Well, when the D stopped, I still felt sick and I just couldn't take my meds and then I realized that ALL the AI issues had disappeared!!! I was actually fairly normal for about 6 months. Then I traveled and when I came home things started going haywire again. I also experienced the RESET button. It was a huge Slap in the Face to get sick again. I couldn't believe how difficult it was to accept recliner life again. Then I came back here and almost immediately started to regain my inner resolve to accept this and enjoy the things in life that I was capable of enjoying. I just love this place, but like you I had no interest while I was feeling well (sorry to all my sisters for that). Anyway . . . I sure feel WAY sorry for illness bringing you back here and I sure hope that you will have everything figured out and be back on track soon. Big hugs for you my sister!! Blessings!
Posted 9/24/2007 3:18 AM (GMT 0)
Hey Ginny . . . I can't help but wonder if the seizures are caused by an AI attack and that the high dose of prednisone zapped that attack?????? I wonder if that's why the seizures stopped????
Posted 9/24/2007 3:43 AM (GMT 0)
Hi Ginny,

Lots of hugs to you in my welcome!!! I'm sooooo sorry for what you experienced with your reaction to lamictal. I understand your feeling of "aloneness" with it as the disease I have "hashimoto's encephalopathy" is also quite rare and I feel so isolated with it.

Now back to lamictal. I have partial complex seizures which they feel are a result of the encephalopathy. I have been taking keppra and topamax to control them. The two together have done a terrific job. However my neurologist in consulation with an epileptolgist think that getting rid of the topomax and switching to lamictal would be beneficial to me.

They went to great lengths to warn--read scare me death--about the reaction to lamictal. They said that it had been linked to titrating it too quickly or starting it at too high of a dose. So my titration schedule is taking 3 MONTHS. During that time, I am still taking the topamax so I am currently on 3 anticonvulsants. Good thing keppra is cleared by the kidneys rather than the liver. Once I reach the therapuetic level of the lamictal, I will begin the titration off of the topamas. Who knows how long that will take!

If you don't mind telling, how much lamictal did you begin on? Oh how I hate seizures and the anti convulsants that control them. I asked my neuro if I could begin to think about tapering off (this was before he started this change of meds thing) since I hade been seizure free for over a year. He said no since the underlying condition (the encephalopathy) isn't under control. I understand and yet I was soooo disappointed.

I'm so glad the worst is over for you. However, what most people don't understand is that the effects are so long lasting. And just getting "over it" is so difficult especially for our bodies that aren't up to par in the first place. Keep fighting, Gin. And anytime you need to vent, or be angry, or sarcastic or whatever, you know this is a safe place.

xoxo emmie
Posted 9/24/2007 3:52 AM (GMT 0)

Well!  That is really interesting Rosie about your reset button months! It's something worth investigating isn't it.  Like you said, if only the medical researchers could harness that reset button and keep it pushed continually! It's amazing what will put you into a remission, or clear up some of the other syndromes we have.

My seizures were caused by the stroke I had in 2002.  Sooooooo, I did talk to my neurologist about the prednisone possibility.  He immediately said, no way.  Couldn't be it.  I wasn't on the high doses for long enough time.  I was on 125mg for only 2 days, then they dropped me to 40 and downward from there.  I was back to my normal 7.5 dose within 2 weeks.  But good thinking anyway! My best guess is the fever.  It could have literally fried that part of my brain where the stroke/seizures were coming from. Regardless of how and why they disappeared, I know that God is a big part of it!

The neuro suspects that someday, could be a month, a year, 5 years, that I will see my seizures return.  But he's only speculating that. He really is awestruck by what has happened.  He's never seen this before!  He also had never seen a reaction to Lamictal as bad as I had either.... Hehe... I've always been a bit of a mystery haven't I!

So ALL of your AI symptoms went away?  That is a miracle in itself.  You must have wondered if you were dreaming! I can completely understand your absolute slap in the face when you got sick again.  When you're well, you really do think that it's all over don't you?  You want so badly to believe that you'll never face another flare up of any kind ever again.  I don't think that's naivety.  I think that's true hope. Hope and the belief that it WILL get better is what keeps us going.

Wow, I'm so sorry you're back here not feeling well too.  We sure know where to get the support though don't we!  To everyone who is new here, you have found a very safe place to pour your feelings out to.  We get it.  We all get it.

Thank you Rosie for the lovely welcome back.  I have really missed you too.  Big hugs coming your way! ((((((hugs))))))))!!

Ginny

Posted 9/24/2007 4:19 AM (GMT 0)
Hey Ginny . . . I just realized that you are younger than my daughter!!! He hee and yet you are such a mentor to me!! Ahhhhh the old mutual admiration society!!! Don't miss Emmi's post to you . . . she must have been typing at the same time as you !! I hope Babs sees your post too!!! YES !!! I didn't know if it was the fever or the big D cleansing my system . . . but I was amazed when I realized that the pain, stiffness and the unrelenting pain in my feet were gone . . . I could even SLEEP soundly again . . . I didn't know if it was lying in bed for several days or just the big purge or fever or what . . . but I told DH that my system had been rebooted!!! I was getting up at 6 or 7am and making my art to sell on Ebay till the wee hours of the morning. Everyone thought I was manic!!! I waited day by day then week by week and then I slowly started to add activity. Woooo Hoooo it was such a nice vacation from the recliner!!! I still want to have a Yo Yo sister's retreat!!! LOL . . . I'll come visit you and we'll line up our recliners so we can face each other and yack all day!!!! LOL Blessings!
Posted 9/24/2007 5:08 AM (GMT 0)
Ginny, you give us hope! That's great news about your seizures. I think many of us tend to drift back to our old lives and away from the forum when we're feeling well. With me it's like looking for some old normalcy, kind of like you described. And then when I crash you are all right here waiting for me.

You really had quite a scare though, and I'm glad you're through the worst of it.
Posted 9/24/2007 1:08 PM (GMT 0)

Ginny,  You don't know me, and I actually don't post much anymore, but I've had a similar reaction to a drug (sulfasalazine), although your reaction was much more severe.  I was put on sulfasalazine for rheumatoid arthritis, and I was up to 6 pills/day.  about the 5th week, I developed a high fever with intense muscle and joint aches--very fluish.  I called my rheumy and he told me to see my primary.  I went to my primary and he passed it off as a virus, gave me a shot of toradol to calm down my joints and sent me home.  Two days later I ended up going to the ER in the middle of the night--my joints hurt so bad I could hardly move, much less sleep.  ER doctor gakked me up on prednisone, gave me some vicodin and sent me home.  The next day, I broke out in the worst rash I've had in my life--from head to toe.  In  my mouth, nose, ears, etc....  My husband dubbed me lobster girl.  It was very bad.  I found out later that my platelets had also dropped dangerously low.  Unfortunately, it was also the weekend and I couldn't bear to face the ER again.  I had the prednisone in my system and was feeling a bit better, although I still couldn't eat because the rash was going down my throat.  I went back to my primary on Monday, and he didn't put two and two together--he was still calling what I had some kind of weird virus.  Went to my rheumy the following week, though, and he said it was probably the sulfasalazine, especially since my platelets dropped as well.  I was very fortunate--I was not hospitalized, and I ended up taking the prednisone which fixed me up very quickly.  Got rid of the rash, and brought my platelets back up to normal in record time.  Without it, things may have been much worse. 

It sounds like your case was much much worse, and I'm sorry you had to deal with that.  Drug allergies are, according to my rheumy, fairly rare.  But when they happen, they can be very severe.  I'm glad that you've recovered.

El

Posted 9/24/2007 2:08 PM (GMT 0)
Ginny, you have been through a lot. I think it is normal to want to go into denial mode both when you go through a near death experience and also when you have a remission. I have done it too, and continue to, with both experiences. It is hard to accept the disease and its ups and downs most of the time. Glad to see you are able to post again, irregardless. I am trying to stay on here during the times I feel good as well as when I am feeling bad. I realize I need that connection all the way through so my emotions aren't so up and down. I have been running from this disease for a long time. Still can't face it all the way, but I am going to try to muster up the courage to stick through it. Not easy.

I went through a period where I lost 80% of my memory and there are still major gaps I don't recall. It is very upsetting and freaky not to remember things. It is a weird sense of loss. It is nice to hear you had a remission and I hope you continue to get better. Had that hair loss before, kind of angers me. All over your clothes and counter tops, food, etc. Can't seem to get away from stupid hair. Like you I am fortunate to have a lot of hair so there were no noticeable bald spots. The loss was very noticeable to me. I never knew how important hair was to me. Long hair is a part of my feminity. After months it did finally stop though. Kind of comes and goes now when my body is adjusting to a new flare. At least it doesn't freak me out when it happens now. I am sure with all the up and down test results and the hair issue, your body is just trying to readjust itself. I believe that if you give yourself time and rest, it will come around. Thankfully our bodies can handle an awful lot of readjustment. I wish I were emotionally able to readjust so well. :)

Nice meeting you and welcome back. My prayers and best wishes are with you - Kristin
Posted 9/24/2007 3:35 PM (GMT 0)
(((Ginny)))... sounds like you had such a horrible time and had to endure so much. I can't imagine how it was to go through so much in so little time. I'm hoping that the seizures stay away for a long, long time. Sounds like you have gotten through the roughest parts, I'm just so sorry to hear that you are going into another flare. I hope that its a small one and very short lived. You have been through so much already. Keeping you in my thoughts.
Posted 9/24/2007 4:36 PM (GMT 0)
Hi Ginny.  I'm so sorry that you've had such a rough time.  It's discouraging for me to live in this body that doesn't cooperate (understatement) and I'm 50.  I'm sending you lots of love, prayers and (((HUGS)))!

Posted 9/24/2007 8:57 PM (GMT 0)

(((((Ginny))))),

   Bless your heart! I'm sorry to hear that you have been through so much. We just never know what to expect, do we? That must have been a frightening experience for you and your hubby.

   It's awsome your seizures are gone for now. I hope and pray they never come back. I'm glad to see again, but sorry to know that you are going through so much.... sad .

   You have been missed! Know that you are loved here by us oldies!!!!  YO! YO! Sisterhood!!!!!

   Please keep us updated, hang in there and take care. You are in my thoughts and prayers.

                                               Love and hugs, Babs

Posted 9/24/2007 11:27 PM (GMT 0)
Oh my goodness!  I love you all!!  What a wonderful welcome back.  I feel like I'm home again....

 

Emmi, I started out on 25mg a day.  That's it!  The lowest dose possible. I had that kind of a reaction on only 25mg and 8 days into it.  Crazy eh!  Even on 25mg my seizures disappeared, so I don't know (and never will know) if the lowest dose would have been enough for me.  So yes, take it REALLY slow.  They had me on a 3 month course of action too.  I would take your temperature every day, and make sure it's not slowly creeping up on you.  My fever hit me like a brick wall.  No warning, but you can't be too careful.  I hope this really works for you.  I found that it also made my moods much better.  They use it for bipolar patients too.  It's a great drug if you're not allergic to it!

 

Patty, thank you for your post and your positivity! You guys give me hope as well.  This is such a wonderful, warm and safe place to crash, like you said.  (((hugs)))

 

El, I do know you, but not well.  I think I left just as you were arriving here.  Your name is totally familiar to me!  I had the exact same reaction you did with the sulfa drug.  That dang rash was in my mouth, down my throat, in my stomach and bowels.  NICE!!!! What a hideous experience to go through.  I absolutely, completely understand what you went through.  I'm so glad you said something to me.  I don't feel alone!  Did you lose your sense of taste?  I sure did. I was lobster girl too.  I was so red in the face it was "almost" funny.  No not really.  It was flippin' scary.  Thank you for sharing with me what you went through.  I look forward to getting to know you more!

 

Hi Kris.  Thank you for giving me some encouragement about the hair loss issue.... It's affecting me more than I thought it would too.  The memory loss for me is very temporary, thank goodness.  I think the fever caused that to happen.  Still disconcerting to think back only 3 1/2 months ago and to not be able to remember details about a very serious event.  I can understand your fear regarding that.  I look forward to getting to know you too!

 

Des!  Thanks for looking after the joint with Rosie and Lynn!  It's a big job, but so wonderful!  Thank you for your concern and well wishes.  You rock!

 

Butterflake,  thank you for your prayers.  I need them and will gladly take them! I also like to give them out.  So if you need a prayer, just let me know! Hehe!  It can be discouraging, but getting replies and love like this from you all really pumps me up!  Thanks again!

 

Babs and Rosie,  oh, that was fun planning our retreat those years ago!  Someday we will get to meet up and yack our heads off.  That would be fantastic!  YO YO YO!!!!

 

Lots of love

Ginny

Posted 9/25/2007 2:38 PM (GMT 0)
ginny, sorry I'm a little late to your welcome back - my life's been a little crazy lately. It's always good to see you. Wow, you've been through a lot. I can't imagine what it must have been like to go through the severe allergic reaction you had to lamictal - how terribly scary. I bet the remission was wonderful and I'm so sorry to hear that you're not feeling well again. You are right that coming here feels like coming home again. As always, the support is amazing and we just have wonderful people here. I don't know what I'd do without everyone here. I always thought it would be neat to have a lupie get together someday, but with how rotten a lot of us feel, travel would be hard. It sure would be nice sitting around talking and drinking some of Rosie's tea. ginny, I'm glad to hear from you again, but I'm sorry it's because you're not feeling well. Hugs and prayers.
Posted 9/26/2007 3:19 AM (GMT 0)

Hi Ginny,

Welcome back! I am sorry you are feeling unwell again, and your allergic reaction sounds horrifying. Thank goodness everything turned out OK. I am glad to see you posting again though, you have been missed. Have you and Grant moved into your new house yet?

Sandy

Posted 9/26/2007 3:51 AM (GMT 0)
HI Hippimom and Sandy!

 

Thank you for the welcomes back! It is good to be here again.

 

I"m still dealing with the after effects of that drug allergy.  My blood coagulation is driving me insane.  My blood thinner meds are all over the map.  I just can't get my blood to calm down and be normal.  BAH!!  So getting poked twice a week is really getting old. 

 

Sandy, you are so sweet to remember that we were building a new house!  Great memory girl! You came super close with my hubby's name too.  It's actually Graham.  But Grant will do, hehe!!  Yes, we've been in the house for 18 months now.  Time flies eh!  The whole street is now built and we know our neighbours well.  I'm actually photographing the wedding of our neighbour's across the street from us!  So it will be super easy to just walk over to their place to do the "girls getting ready" part of the day!  Love that!

 

I think I'll go have a cup of Rosie's tea! Nighty night!

 

Ginny

Posted 9/27/2007 12:27 AM (GMT 0)
WOW Ginny! You have been thru a tremendous amount of stress and I am really proud of you for being strong and making it thru all of that. That is remarkable. I hope you know that. I read your story and it brought a tear to my eye... I remember talking to you a while back... I myself only seem to talk when I have Lupus Probs... Although when I have probs sometimes I just read thru the posts.. not really wanting to chat.. just hopeing to find the answere I am looking for.. I dont know why I do that..
Anyway... I guess about two years ago I was having MASSIVE headaches... Conclusion.. major blood clots in my brain.. Yea Hello! No wonder my head hurt and I have Lupus Anticoagulant Blood Disorder... So I take coumadin daily now... I get my blood drawn weekly for my pro time and INR... Sometimes more than that.. Depends how low or high it is... Must stay away from the vitamin K Gin... Its not good for us.. Im sure you know that.. Hard to adjust to... but what can ya do...
Best of luck to you... Im glad you made it thru all of that MAJOR ORDEAL! YOU ARE A SURVIVOR! Im proud of you girl!

Steph
Posted 9/27/2007 12:32 AM (GMT 0)
Oh yea Gin and the hair loss.. Welcome to my world.. If I dont clean the drain after every shower it would become a massive hair pile.. I loose soooo much hair... If my hairdresser quit I would just stop getting my hair done. She is the only one who understands my hair. She has been thru it with me from when I had ALOT of hair to where I have THIN THIN THIN hair.. IT sucks! But hey atleast I am not bald and I have two legs and two arms that work.. This is just hair I am talking about... I shouldnt let things like this get to me.. although its hard. You feel alone and sometimes you do need a little pitty party.. but remember to lift yourself up the next day... however it is that you do that.. wether its meditation... the gym... my new fav, mystic tanning... whatever.. you need a pick me up.. go get one.. a massage maybe? A facial? Girl you need one.. I hope you feel better very soon...
Take Care
Steph
Posted 9/27/2007 2:15 AM (GMT 0)
Thanks for the pep talk Steph. I needed that!  And yes, I need a facial too!  Hehe.... This has been really hard on my husband as well.  He has no idea how to help me and feels like a shmuck because he can't do anything for me.  I keep telling him that the best support is to just BE there for me.  Hold me, hug me and let me talk when I need to and just listen to me.  He's awesome.  We are planning a trip to L.A. in February for my birthday.  We're very excited about it.  I know I will be much better by then, God willing.  We need to bring in 2008 with some fun.  So that is our major treat to each other. 

 

That's right.  YOu have hair loss too.  I forgot about that.  We've had many chats about that haven't we!  Well, my hair is now thin enough to wear it in a cute bob! Before, with my lion's mane, a bob would have looked like a triangle.....  So this is really fun!  If it would just stay like this, I'd be so happy.  I think I'll be bald by Christmas at this rate.  I pull wookies out of my drain.  So gross....  At least we can relate eh!

 

You take care too!

Ginny

Posted 9/27/2007 2:32 AM (GMT 0)
My Bday is Feb too. Are ou a picses? 20th?
Posted 9/27/2007 7:10 PM (GMT 0)
No!  I'm an aquarian.  February 18.  I'm on the cusp! 
Posted 9/27/2007 8:07 PM (GMT 0)
Hi Ginny:

Sorry it took me so long to respond to your post. It sure sounds like you been through the ringer lately. I'm sorry to hear all about your troubles. I just wanted to pass on my best wishes to you. I'll be praying for you and may you be able to ring in the new year with a bang.

I've had quite a struggle since last August 2006. I'm still fighting and trying to retain as much hope as I can. Long story short, some of the meds I took for my lupus ended up giving me a rare blood cancer. Now I'm awaiting for the other shoe to drop and my bone marrow to totally fail, so that I can then get a bone marrow transplant if a donor is found for me. Needless to say it can be very trying on days, it's hard to hear from your doctor "I'm sorry but because of your age, you're going to be terminal from this cancer, and we'll need to attempt a bone marrow transplant to try to save your life". I have up and down days and I think the lupus and MDS are feeding off of each other.

Anyway, welcome back, I'm sorry you're flaring. Go get that massage and facial you deserve it. You're a good inspiration to us all.

Take care,
Barbara
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