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kateelizabeth933
New Member


Date Joined Feb 2016
Total Posts : 7
   Posted 2/18/2016 5:08 AM (GMT -6)   
I am 22 years old and I'm in the process of being diagnosed with lupus of adult stills disease (my mom has lupus so it's looking more like that) I also have CRPS a rare pain disease. I never complain about the cards I've been dealt the only thing I ever say Is I'm not doing well today or I'm in pain and even that I keep it at a minimum especially with my friends I don't want them to worry or baby me. Well yesterday I saw my rheumatologist who said my quality life is not good and I need to start considering going on the next step of drugs like methotrexate. Which freaks me out because I watched my mom struggle with those types of drugs for years and it was the first time this disease felt real and I'm scared. So I tell my two best friends about it kind of explain everything to them one was very supportive and we'll get through this I won't let you do this alone you're okay the other (this was all through text message) says " at least you're finally get somewhere sorry if I'm taking awhile to answer I feel like death I have a really bad cough and my throat is killing me and my heads pounding" I seriously couldn't believe what I was reading. I'm not saying that my friends can't talk to me about their health issues no matter what they are if they're as serious as mine or not. But I think there's an appropriate time for that. And I don't think it's when I'm saying cancer medications are becoming the next step for me and I could lose my hair, if I got pregnant I would have to abort the baby because of the medications. I mean it's serious scary stuff I don't think for someone to bring up a cough after I say that is appropriate. Can I have some insight please on how to handle something like that or if I'm over reacting and just being sensitive. Thank you for any responses.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 2/18/2016 9:57 AM (GMT -6)   
People, especially young people, often don't know anything about Lupus, or about MTX. Until you've had a chance to educate them, don't be surprised. And, unfortunately, some will still be quite self-centered. And sometimes, esp when we feel like your friend described, we are human and we just don't think about what we are doing/saying!!! Time will tell who your true friends are.

I'm concerned, however, about what sounds like an immediate jump from no treatment straight to MTX. I think of the various meds used for Lupus in tiers -

1) Plaquenil (which you will remain on), Prednisone (to address inflammation)
2) Imuran, Cellcept, MTX - we don't know which of these will work for an individual, so it's trial & error - perhaps your Dr will let you try Imuran or Cellcept first before MTX. Imuran did nothing for me, but Cellcept saved me big time!
3) Benlysta, IVIG, plus I think there is something new in trials

Let us know how it goes!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 2/18/2016 1:32 PM (GMT -6)   
If you haven't been welcomed to our forum kateelizabeth, hello. I'm so sorry to hear of your diagnosis Sweetie. Please take a deep breath and try to relax. Lupus really, really sucks, but it's not a death sentence. Plus women with lupus have babies, they just need to see specialists and get extra care.

If you're not on plaquenil, it's usually the first med of choice like Lynnwood said, but it can take months to work which is why you may be starting MTX. I've taken just about all of the lupus meds at one time or another. If I recall MTX took a long time to work also, but it did give me relief for a while. There is always prednisone for bad flares, which I bet almost everyone on the forum has taken, but the side effects are a #*%#.

As for friends, I had my share of co-workers who simply never wanted to hear how I was actually feeling and never asked, "How are you today?" I've been on disability since 2008 and since I'm a quiet person anyway, I don't socialize. Lynnwood lives close to me and I haven't visited her in ages :( You may loose some friends due to your illness, but you may also gain some. There are caring, empathetic persons who WANT to know how you feel. On the other hand I have family members who never ask. Go figure. You will always find friends here on the forum who are willing to listen and are supportive. Also you need to check out another site www.butyoudontlooksick.com and read the Spoon Theory. It's so well known you can probably google Spoon Theory. Lupies have a terrible problem that we can feel worse than dog crap, but look perfectly healthy which makes it even worse for friends to empathize. I am very glad you're here. Love, Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

kateelizabeth933
New Member


Date Joined Feb 2016
Total Posts : 7
   Posted 2/24/2016 2:40 AM (GMT -6)   
Thank you so much for the replies! I have been on plaqunil for two and a half months they've doubled the dose already and so far nothing they say at the three month mark is when they say its ineffective. So that's why my doctor was Saying we might want to start thinking of next options. Because of the mix of lupus and CRPS it's very hard for me to live. And part of the reason their kinda preparing me for the next step is because plaqunil didn't work for my mom and were thinking this type of lupus is genetic. My mom was diagnosed at 21, I got sick at 21. My Ana is neg my mom was neg for years same with double stranded DNA the only thing that points to lupus is high sed rate extremely high CRP (like 30 when the scale here is 1-4.9) high platelets and 2 positive lupus anticoagulants, and swelling over joints some pain breathing and fevers which is why adult stills disease is on the table but since my mom has lupus and had a similar pattern it's most likely lupus. My mom also has myasthenia gravis. I've been taking care of her since I was 12 and my dad and brother left. I became a nurse to specialize in care and now I'm down and out I'm getting married in October which is why stronger drugs scare me. On one hand they could make me feel so much better on the other they could make me look sickly, hair falling out ect. I'm on prednisone now very low dose they literally just bumped me up to 10mg. But I'm still having high fevers and with fevers I get a red hot rash on my face that looks something very similar to a butterfly rash. But goes away when the fevers gone this is one symptom my mom never had. So I dont know in Some ways I feel stuck and I'm not sure who I need to be. I'm hoping there's a new medical trial going on for plasmapheresis via IV rather than a port which could change everything I'm hoping to get in that trial. Thank you ladies for the support and I'm going to look up that spoon theory now!
Xoxo
Kate
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