Living life with Lupus

A support group for anyone dealing with, or those who know someone dealing with, Lupus

[living-with-lupus]

Ongoing Lupus....

Hey guys!! Haven't been on in a while but excited to be back!! I've been doing MUCH better since my reactions (plaquenil and hives), still on 2 antihistamines and so far the Imuran for lupus symptoms hasn't caused any reactions!! He has upped the amount of Imuran but still a day to day thing; definitely have to take 1 day at a time :(

[living-with-lupus]

My Reactions Update

So its been a few days now since I've had hives!! My plaquenil reaction has also seemed to clear up. I'm still on 2 antihistamines for the itching; which I still have once meds wear off. Also, he has put me on Imuran for lupus symptoms/ pain, also is helping to a point! I'm so happy these reactions are almost behind me (hopefully). I still may end up on antihistamines for awhile but that's life!!

[living-with-lupus]

Sorry everyone I wasn't on here yesterday; I was just too sick :( The last 2 days of been my worst days of pain to date, to the point I was in bed ridden. These hives have been going on a week, this plaquenil reaction over 5 weeks (about gone!!) This past Friday finally saw my rheumatologist and he put me on Imuran and a prescription antihistamine. .if no difference I will then see an allergist. I am noticing a little difference with the Imuran, pain wise but noticing it is causing major upset stomach etc Anyone use this medication, have insight etc?!"

[living-with-lupus]

Rheumatologist Appointment

I finally got in to my doctor first thing this morning!! Between the plaquenil reaction, hives and the pain; it was time, I needed seen and not just communicate on the phone. He definitely concluding that I'm in a bad flare up/hypersensitive and nothing has worked do far :( After meeting with him, I was hooked up to an IV again to try and blast my system, I will start 2 new medications tomorrow! Hopefully these work, if not; I may see an allergist as well to try and get things under control if needed. He is such a nice doctor, even though it requires some travel, its worth it!

[living-with-lupus]

Today has been one of the hardest days to date so far; not able to get out of bed. These hives keep coming and going, my body is SO warn out and the meds don't seem to be helping :( I felt my best hooked up to IVs on Sunday; meds seemed to help the most!! I hope this blood work I'm waiting on shows something that can really help all my doctors know which direction to go!

[living-with-lupus]

My Hives Reaction

As I previously wrote, Saturday I some up to hives all over. Ended up taking zyrtec and benedryll throughout the day; seemed better until early Sunday morning. Starting having trouble swallowing and breathing but wasn't massive at that point, phoned my rheumatologist at that point. He wasn't convinced it was anything I ate; that it's from my body being SO hypersensitive at this point :( he told be go straight to the ER and get meds to calm everything down especially since breathing and swallowing were becoming an issue. Get to ER, good I went as throat wasn't looking good and chest tight! After about 2hrs and 4meds later, things calmed down and I was released. On meds til Saturday for this reaction and hope all is good then!! Saw PCP today and doesn't think this is food related specifically either; he believes due to hypersensitive to anything and everything at this point. He also had me get an Epipen at this point just in case.

[living-with-lupus]

Now Hives

Woke up this morning to hives on me! The only thing I had different was a dunkin donut yesterday ( haven't had in a long time) so not sure if from that, the lupus or still this reaction I'm still dealing with. I thought at the tail end of the plaquenil reaction/rash; but maybe not...always something new :(

[living-with-lupus]

Hoping I finally at the end of this rash; its only been a month! Still pretty itchy and hands/feet peeling bad but WAY better than in previous weeks. Think I'm going to get my new round of blood work tomorrow and see where we are at! Hoping the next medication agrees with me!!

[living-with-lupus]

Rib Pain

Woke up today in massive pain under my left rib, practically doubled over in pain! After crying for a bit and laying back down...it did subside finally. I really think it's due to my costroconditis; at least I hope so (in a way at least!)

[living-with-lupus]

Had a pretty nice day even though the hubby had to work :( Had some fun shopping for me and our little one! Buy the end of the day I was getting tired and my hands were killing me though; needed a break! This plaquenil reaction is taking FOREVER to leave my system; although some of the pain is coming from lupus as well.

[living-with-lupus]

I'm scared. My doctors think I have lupus. I get my ANA test tomorrow. How do I deal?

Hello!! I'm not sure how your prognosis came about but for me its been about 6mo prior to being diagnosed (just officially diagnosed about a month ago) that I've definitely know things weren't right. They finally ran all my blood work, found good rheumatologist and kidney doctor, have issues there to they found. Its different day to day honestly, have good and worse days. Once diagnosed you will go on meds to help, hopefully work! I started this blog on here to tell my story/journey, day to day life AND help those with support and awareness :) please feel free to ask me ANYTHING.... I'm here to help!!

[living-with-lupus]

Plaquenil Reaction Update

According to my rheumatologist I'll probably have the reaction another week or so :( At the major burning and stinging stage still, hoping it heals without scaring and damage!! Gonna try baby oil tonight on the skin and hope for a little relief, especially while sleeping :)

[living-with-lupus]

Rheumatologist sent me to the ER yesterday due to this plaquenil rash/reaction. All they really ended up saying was my skins SO bad still due to the reaction; just not going away! I'm at the point of so stiff, no creams etc are helping; just burning it, sitting and laying hurt as well! This is making me scared to try a new medication once this is all over but at the same time know I need help and meds.

[living-with-lupus]

This plaquenil reaction/rash is seriously like no other! I'm a week and a half into this rash and the itchiness has majorly subsided ( still there some) but not feels like 3rd degree burns in spots. My skin is continuing to peel but where peeling, it burns, is red and blotchy... seriously can't win!! Hoping this ALL passes soon and can try another antibiotic for my lupus; starting to really think the rash and reaction aren't healing easily due to the lupus.

[living-with-lupus]

My Journey Continued....

Well into over a week of this rash, its now at the 'sunburn' stage. When this plaquenil rash all started, I had no idea what I was in for to recovery! My body is now peeling or as I say 'shedding' all over...I'm just hoping this rash fully clears soon. I'd like to wear my short sleeve shirts and enjoy my day some; not feeling 'raw' and looking yuck!

[living-with-lupus]

Retaining Fluid

While still dealing with the plaquenil rash, I'm now retaining fluid in my legs the most. Saw my kidney specialist today and ended up on a water pill for a few days; then will be as needed. Hoping this all subsides soon and can get back on track with meds for the lupus!!

[living-with-lupus]

Swelling a Lot

Taking it easy today as my legs and feet are incredibly swollen and hurt. I'm about a week in to dealing with this plaquenil rash and unfortunately still pretty bad :( I'm not sure if the swelling is part of how my body is dealing with the reaction or something else. Still noticing my legs become blue throughout the day; definitely after a shower, also tingly when walk on them after resting a while. Hoping this rash gets out of my system quickly and get some relief!