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craftkeeper
03-05-2011, 07:28 PM
What a strange disease. For the last three days i have not felt bad at all,just a few pains here and there. A little Nausea after taking the Plaquenil and a little itchy. A couple of hours ago my chest started hurting, then my legs started hurting and swelling. Now my mouth is full of blisters and i have welts coming up on my shoulder. I can't hardly sit up in my computer chair. Is this Lupus or is it the Plaquenil? Does it always hit this fast if it is the Lupis? I have a burning pain in the muscles across my shoulders and down my arms. I also have a big itchy round red spot on my back that looks like it is scaling.. What the heck is that? I really dont want to get out in the terrible weather we are having to go to the E.R. so i will lay down for awhile and see if it will pass

magistramarla
03-05-2011, 08:17 PM
The scaly sore sounds very familiar to me. I used to get them frequently, but the Plaquenil and MTX seem to keep them under control for me.
I don't know how long you've been taking Plaquenil, but it can take a long time for you to start noticing that it is helping - sometimes months.
Most of us agree that we really notice the difference if we stop taking it.
Hugs,
Marla

scubagramplit
03-05-2011, 08:31 PM
If this happend just after taking the plaquenil I would say that you are probably having an allergic reaction and you should go to the ER. waiting could be really bad.

craftkeeper
03-06-2011, 05:41 AM
Hey all. I made it through the night and feel some better. I have been takeng Plaquenil for about five days now. The big itchy spot on my back has been with me for a little while it just got worse. I have a appt wed at my derm to have it removed.

I know that i have had some really bad stomach upset on the plaquenil. As a matter of fact i have lost five pounds in as many days.. This is a good thing though. I hope that it is not the meds for i refused to take the first one he gave me. Methotrexate. I got it filled then looked at for a couple of days and decided i couldn't do it. Then he gave me Plaquenil and i got it filled, and decided i needed to give it a try after my oldest daughters incesstant nagging. The Nurse. Sometimes having a nurse in the family is a mixed blessing. LOL.

I am going to see how things go today and if it happens again i will head to the E.R. I woke up achy and sore,but that seems to be a norm with this thing. Thanks everyone.

tgal
03-06-2011, 12:31 PM
I hope you are feeling better today. It is good if the spots are going away so quickly because it usually takes the plaq. 4-5 months to really work. It kind of sneaks up on ya! I think you are very wise to go the ER if things don't get better soon. Please keep us posted

craftkeeper
03-06-2011, 06:19 PM
Thank you so much everyone. I promise you, i have already had more concern and conversation about everything that's going on with my lupus diagnosis with the folks on this board then i have from any of my "friends". It seems they have all disappeared. How spooky.

I wonder if it is because they are uneasy about talking with me about it because it is something that they don't really know about. I thought about throwing a "yea me i have lupus party" and see how many of them would come. It kind of hurt my feelings at first, now it just tee's me off.
Anyway back on subject..... Thanks everyone i do feel some better. I think i will call my doctor tomorrow though, because i have been having a terrible pain all around the left side of my ribcage and into my back.. i had inflammation in my cartledge once and i sure hope that is not what is happening now..

I was trying to put everything off until Wed because i have a appt with my dermatoligist to have a big spot taken off of my back that has worried us lately.. I use to own a tanning bed and i always worry now when something comes up on my skin.

Lord if i could turn back time and take back all of the things i did to abuse my body i surely would. I remember when i was 36 my doctor told me i would really regret some of the things i was doing to damage my body.. Wish i had of listened.

Anyway. Good night all and God bless each and everyone of my new friends here.

tgal
03-06-2011, 07:14 PM
" if i could turn back time and take back all of the things i did to abuse my body i surely would"

This is a subject near and dear to my heart. I think about this so often. If there is anything that I could do I most likely did it as a teen. I was so hard on my body. From anorexia/bulimia in my early teens to massive amounts if drugs and alcohol later on. I did it all so well that I cleaned up at 21 but the damage had been done. I know the things I did messed with my heart and my teeth (partials since my late 20s) but now I wonder if I did more than that. I wonder if my destruction of my body is coming back to pay me now.

Of course I don't dwell on it and I don't get upset over it but I do wonder if I played a part in doing this to myself. I am pretty sure that is not it because I remember having trouble dropping things as a child and I remember what I now believe was a flair in my early teens. I am sure the things I did didn't help it but I believe mine started hurting me before I knew what it was.

FYI... I am glad that you are comfortable enough to come talk and that you feel that it is helping. I know you will come to love it as much as the rest of us

jmail
03-06-2011, 09:21 PM
... The Nurse. Sometimes having a nurse in the family is a mixed blessing. LOL...
I've got a mom-in-law, and two sister-in-laws that are nurses, plus my wife is an EEG Tech, and is very up on "medical"... I can't do *nuthin'* without hearing from at least *one* of them...


... Lord if i could turn back time and take back all of the things i did to abuse my body i surely would...
My oh my oh my... amen sister... He even tried to warn me, and more than once, too! Would I listen?... no-oh-oh...

If you're ever in doubt about alergic reactions, do some Benadryl, and pay attention to your breathing & heart rate. Any sign of difficulty breathing should be cause for alarm. As for "friends", some of mine I think were worried that I might quit partying with them (which I did - over twenty years ago). Others were afraid that I might whine & complain too much, which I probably did. But, not too many of them tried to educate themselves about AI diseases, until one of them got one. *Then* all of a sudden, he wanted a "whine" buddy... lolol - It *is* kind of fun sometimes to compare notes with him. We can be like two 80 year old guys, sittin' in our rockers on the front porch at times... lol - But this *is* a great site, ain't it? with all sorts of helpful folk...

magistramarla
03-06-2011, 09:48 PM
Hey all. I made it through the night and feel some better. I have been takeng Plaquenil for about five days now. The big itchy spot on my back has been with me for a little while it just got worse. I have a appt wed at my derm to have it removed.

I know that i have had some really bad stomach upset on the plaquenil. As a matter of fact i have lost five pounds in as many days.. This is a good thing though. I hope that it is not the meds for i refused to take the first one he gave me. Methotrexate. I got it filled then looked at for a couple of days and decided i couldn't do it. Then he gave me Plaquenil and i got it filled, and decided i needed to give it a try after my oldest daughters incesstant nagging. The Nurse. Sometimes having a nurse in the family is a mixed blessing. LOL.

I am going to see how things go today and if it happens again i will head to the E.R. I woke up achy and sore,but that seems to be a norm with this thing. Thanks everyone.

Craftkeeper,
Don't be afraid of the Plaquenil. It's a pretty mild drug, and it does eventually help. It gave me stomach problems at first too, and it also gave me "the trots". This was no fun, because I was teaching at the time. Getting "that urge" when you're in front of a classroom full of teenagers and another half hour until the bell is not a good time!
My body has gotten used to it now, so it rarely bothers me. I've been taking it for two years now.

I also take Methotrexate injections. I was scared at first, but it's not that bad. I feel nauseous for about 20 hours, then I'm good to go for the rest of the week. I have an overlap of RA, and MTX is very good at keeping the RA from progressing.

Hopefully, you'll soon figure out what your body needs to get control of your disease.
Hugs,
Marla

magistramarla
03-06-2011, 09:59 PM
" if i could turn back time and take back all of the things i did to abuse my body i surely would"

Friends,
DO NOT beat yourselves up over this. I'm just the opposite of this - I was always "the good girl" - never smoked, never did drugs of any kind, drank very moderately, cooked and ate "whole foods" since I started cooking and exercised as only the mother of five can - full-out run most of the day.
I didn't abuse my body at all (unless you count too much "whoopie" and a lot of pregnancies) and here I am, just as sick as you are.
AI diseases are equal opportunity diseases.
Hugs,
Marla

craftkeeper
03-07-2011, 05:16 AM
Thanks everyone.. It is so good to talk.

It's interesting but as i look back although i did alot of self inflicted damage to my joints,IE{ 17 years of martial arts, heavy weight training and alot of running} i thought i was doing my body good.. I guess i never learned moderation.
But i think stress has been alot of the problem for me.
My oldest daughter was anorexic also Tgal, It's a horrible thing. We almost lost her at 17 but thank God she came through and has given me two beautiful grandchildren.
In 1994 my brother was shot and killed and my parents never recovered from that. Being the only child left i had to care for them. In 1995 i think, at the age of 36 i in went into law inforcement and that was the most stressful thing i have ever done. I quit in 2000 after a four year old child died in my arms. My dad died 8 years ago and my mom who suffered dementia came to live with us.. Now mind you in the middle of all of this i home school my nine year old daughter for the last three years.

I cared for my mother by myself {with my wonderful husbands help}up until the last year of her life when her insurance allowed me to have a daytime nurse. Last October, while having a heart cath done, the doctor hit a piece of Plaque and it dislodged and went to her brain. She suffered a massive stroke. I brought her home and cared for her for her until Dec 12th, when she passed away at home. I think i have pushed my body and mind so far that now it is pushing back. My old doctor told me i thought i was super woman. That i needed to learn how to relax and quit trying act like a man when i would go to him for numerous muscle strains and broken or sprained bones. I remember being so offended by what he said that i threatened to fire him..

But you are right marla i can't beat myself up over the things of the past and go from here. I have done and accomplished most everything i set out to do in life except win the Lottery. Thank God i have a wonerful husband and family who support me and a brand new set of friends to talk to when i get down. I shall go on until the Lord calls me home.
Dang that felt good to get all of that out.

craftkeeper
03-07-2011, 11:45 AM
Hey everybody, Thanks so very much.. I typed another big reply to this early this morning and now i can't find it on here.. if i happened to to stick it on someones else's thread please forgive me. LOL. I am so senile.

Marla your whoopie comment just cracked me up. Yesterday was my father in laws 79th birthday. I called him in Florida to wish him a happy birthday when he preceded to tell me how the doctor had just told him he had a degenerative hip disease and eventually would not be able to walk.. I asked him if it was hereditary and he said " Naw it was just making all them baby's. Ha, what a hoot.

You are right , who knows why we are all here, can't stop and reflect on why, just take it one minute at a time

bunny28
03-07-2011, 01:06 PM
I started plaquinil almost a month ago. I just wondered if you are taking it with food. My doctor and pharmacist both recommended that to help with stomach upset. The pharmacist also mentioned not taking ibeuprofen (advil, motrin) etc at least for a while as ibeuprofen is also hard on your stomach and in combination, it might be worse.

I hope things are going well for you today...

bunny28
03-07-2011, 01:09 PM
After reading this morning's post, I just had to add that craftkeeper you are a person of amazing strength. You have dealt with so much in your life. I am sorry that life keeps handing you challenges. You have already proven your strength of character and caring time and time again. I hope that the plaquinil and medical care you are getting now will ease some of your symptoms. Take care.
Bunny

craftkeeper
03-07-2011, 04:06 PM
Thank you Bunny for such kind words. Sometimes it's hard to see while your in the midst of a situation that is really hard, That somewhere down the road there is always something good that will come out of all of our hardships. The things i have dealt with were hard, but i learned something in each and everyone and among the tuff times were alot of good. I just had to point them out to myself sometimes..LOL

I do eat before i take the Plaquenil but i honestly dont know if it's because i refuse to take meds except my Thyroid medication and i'm really sensitive to this new drug or if it's me talking myself into it.. lol... i'm afraid i'm one of those people that can read the drug printout and come up with every side effect that it lists. I am super allergic to several pain medications so i am always leary..as a matter of fact i feel alittle hivey just talking about it.LOL..

tgal
03-07-2011, 05:01 PM
LOL Craftkeeper you are going to fit it just fine around here! LOL

porchy
03-07-2011, 05:10 PM
I hope you feel better soon ~ I have not taken any of these drugs since i have not been diagnosed with lupus yet. I am on so many drugs now for other ailments, I can't (and don't want to) imagine adding more into the mix.

I also abused my body when I was young & stupid. I took many recreational drugs, including LSD, speed, downs, mesc, pot, you name it. I went through a phase just before I began having fibro symptoms where I drank beer all the time. Started up again during a time when I was alone alot (hubby was driving a semi over-the-road) and I joined a pool league. Pool leagues play pool in bars, and I made the bars my second home. It was a miracle that I made my way home safely most nights.

Now I take lots of drugs every day and wish I didn't have to. All I want now is to feel normal. LOL Life is crazy.

bunny28
03-07-2011, 05:51 PM
LOL Craftkeeper you are going to fit it just fine around here! LOL

I like this!lol!

craftkeeper
03-07-2011, 06:39 PM
And i'm just tickled to be here. If you have to be sick you might as well be with friends...and everyone please fill free to call on me of you need me.. It's like i always say " My advice may not be any good, but i always have some for ya.:laugh:

wow
03-17-2011, 02:54 PM
I'm with you craftkeeper, if you have to be sick, do it with friends. Like earlier posts, the friends I had diappeared as I got sicker.

craftkeeper
03-17-2011, 06:14 PM
Hi WoW, yes the friends sure disappear at the strangest times dont they? The heck with them i say..There's good people on this board to talk to so i really dont miss them that much anyway.. Just more time for my family and myself and my new friends here

lovehubby
03-17-2011, 07:40 PM
If you just started the Plaquenil it could be a reaction to it i would call the Doctor and make sure it is better to be safe.

magistramarla
03-17-2011, 09:01 PM
I simply don't give my younger and healthier friends a chance to ignore me. I moan, groan and tag along with them.
I'm the Vice President of the Officers' Spouses' Club, so I sit on the executive board. I'm also a member of the Gourmet Groupies, the Lunch Bunch,
the annual Wine & Beer tasting and silent auction committee and the Navy Ball committee. If anyone asks why I use a cane and move so slowly,
they get the full explanation of autoimmune diseases. It's gotten to the point where our president will shame the younger gals for not volunteering by pointing out
how much I do for the club.
My motto is to never give up and to keep educating everyone around me about AI diseases.
Hugs,
Marla

craftkeeper
03-18-2011, 04:09 AM
Hi Marla, you are so right. You just have to try to keep keeping on and it sounds like you do just that. I am 51 and have a nine year old daughter. I have 2 Grandchildren that are the same age as her.. I really dont have time to slow down. Not with them anyway. But i have come to the realization that i have alot of unwanted baggage that needs to go so i can take care of myself and unstress.
My artwork is a stress reliever,so i will continue. People that dont really matter in my life and drain my spirit will have to go. I still love my friends,but i'm afraid they will all either have to grow up or call Dear Abby.

The only one that is really driving me crazy is my dear hubby. He flitters around me like i am dying and after working 10 hours a day tries to come home and do my work. He wont let me outside and battles with me over the housework. Dont get me wrong, i think it's wonderful how much he care's, but i have got to get him calmed down somehow. Years ago, just months before the wedding, his fiance'[is that spelled right?] died from a extremely rare disorder that no one knew she had, so now he is terrified everytime i get a little sick. He's such a wonderful guy, but he's going to make himself sick..I wanted him to read a few of the post here to get a better feel of what's going on, but he gets to stressed. Maybe after the new wears off and he sees that i'm going to stick around awhile he will cam down.

wow
03-18-2011, 12:03 PM
Marla, I'm jealous. I answer as succinctly as possible why I use a cane, etc...and only when asked...and everyone around here acts like I moan and groan all the time. If they just ask 'how are you?' in a polite greeting, I say 'Fabulous', but if they're specific, I'll answer them. So why do they even ask? It's not my fault the lupus didn't go away. hehe.

I'm happy for you. You're a brave one, powering through to do all those activities.

Craftkeeper, you're husband is very sweet. I imagine if the roles were reversed, you'd be hovering over him. (you're obviously worried about him) In time he'll probably realize you're hanging around. I guess sometimes we forget that we aren't the only ones who have to accept our diagnosis. Give your hubby an extra smooch from all of us on the board!

magistramarla
03-18-2011, 06:34 PM
Craftkeeper and Wow,
I'm 53 and we have five adult kids, ages 24 to almost 34. Three of the girls have a son, so we have three grandsons, who live in three different states. The oldest is 11, the next one is 5, and the little guy is 1.
Jeff and I have always taken turns at supporting each others endeavors. We finished college together with two little girls by the time we both graduated. I took care of the kids and supported his AF military career in many ways. When I went back to teaching after 20 years, he was my tech help and cheering squad.

Just when my health was getting so bad that I couldn't teach any longer, he was accepted into a program for getting his PHD at The Naval Postgraduate School. I helped my school to find another Latin teacher, we cleaned out and rented our house, and moved to California with our two cats. Now I'm enjoying living on the beach and I'm staying involved in the military social life. Our kids were shocked when we "ran away from home".

I watched my mother and my aunt suffering with many of the same symptoms that I now have. I think that they had AI issues that were never properly diagnosed. Aunt Erma just became a hermit and was helpless and pitiful. My mother became mean and abusive to anyone who tried to help her. I think that after seeing how they responded, I decided to react differently. We've gotten to the point in our lives that we can travel and have fun together, so I try to hang in there and do as much as I can. I'm not shy about using my cane, and I use my wheelchair when I travel. Jeff rolled me out onto a pier on Waikiki for a picture in front of Diamondhead. We traveled all over Tokyo on the trains and had a blast. Last summer, we accompanied my oldest daughter and son-in-law to Greece. I was lifted to the top of the Acropolis in my wheelchair.

Life is short, but I intend to see the world despite the pain!
Hugs,
Marla

steve.b
03-19-2011, 12:30 AM
Marla,

obviously 53 years young.


i love it..........

enjoy each little adventure, you deserve it.

Peridot20_Gem
04-01-2011, 07:12 AM
Oh Marla,

That's what i love about you mate enjoying your life to the full, you've seen enough through your mom which was a shame.

Have you moved back to Texas yet as i know you'd took to california so well??

~Love Terri~