Just diagnosed with severe lupus!What??? Yeah thats what my doctor said!At first he said borderline that took a quick 180 .Plaquenil 2 a day

Just diagnosed with severe lupus!What??? Yeah thats what my doctor said!At first he said borderline that took a quick 180 .Plaquenil 2 a day

Okay at first my rheumatologist said "you may be borderline lupus...and I was like"WTH is that??After waiting 3 weeks for labs to come back from California .I was expecting a no answers no help no nothing.Because this has been my last decade of answers NOTHING...Instead I got the hard core truth.YOU HAVE LUPUS or what seems worse than lupus.Your numbers are higher than regular severe lupus or RA numbers usually are.I'm giving you a very strong dosage of plaquenil twice a day for 3 months.It should make you feel a lot better and bring down these number so we can give you a real diagnoses....So I'm not what??I'm confused so what do i have?He repeats a very severe case of lupus above the normal numbers but you are walking so we will see.He said "you must have a high tolerance for pain.I said "no I dont I cry in the bathroom or shower or when I'm alone.I can hardly walk and just bought an expensive foot massager to help with the pain I'm waiting on it to come I ordered online!I do have chronic kidney stones so I'm used to pain but.I have ulcers on my eyeballs and in my mouth and other tmi area's,all the way through my digestive track.My small joints finger toes wrist hands knuckles all feel broken.I have a rash across my whole face,thank god for makeup!I'm on tramadol and valium for pain and panic.I'm a hot mess.But after all is said and done.I only left with 1 thought.He said I couldn't or should not attempt to have a baby.I never knew I had lupus last year. I went through an entire pregnancy had a beautiful daughter .I feel like god made me go into remission for my entire pregnancy. Just so i could have something to live for ,something worth this pain. All I ever wanted my girl, my best friend, my life my daughter!Juliet you are my miracle and I will be thanking god every morning and night I got you!

24 Replies

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  • Hello Juliets mom, awful dx but it sounds as if you are in good hands. Take notice of your specialist and look after yourself and your dear little daughter. Bless. ๐ŸŒท

  • All best wishes to you and your darling daughter,take care,love and soft hugs xxxxxx

  • Juliet is a beautiful little girl. Well done!

  • Thank you I love her to pieces.

  • Hello. Getting a lupus diagnosis can be a strange mix of relief - in that you aren't going mad, there is something wrong and being scared stuff because that diagnosis is a chronic illness. I read as much as I could so I knew what I was dealing with. I have mild to moderate SCLE and I take 2 x 200mg a day of hydroxychloroquine- so don't be scared by that medication or the dosage, I think most lupies are on hydroxychloroquine. It's a starting block and other medication is often added as things move forward with various texts etc. Fate meant you had your daughter before your diagnosis and she looks happy and healthy. How wonderful. Take care of yourself too, get a much rest as you can. Best wishes.

  • It must have been a shock for you, I know how it feels.

    Good luck with you meds. Time to look after yourself, read as much information as you can about lupus.

    I too have foot massages, orthotics to go in my shoes, many different contraptions for relieving pain, they all seem to help for a few days.

    The only thing that really seems to help is resting when I need to.

    I was well when my babies were small, I suggest that you rest rest whenever your beautiful daughter has a sleep.

    I hope that your pain improves.

  • Thank you I dont rest much lol..I cant I just think I need to do dished now I need to do laundry everything's a mess.But I been falling asleep sitting up!

  • Oh forget the mess!

    Just the basics, concentrate on your daughter and yourself, just the important things โ˜บ

  • I'll try to I'm the house cleaner nobody else does those thing accept for me.

  • BEAUTIFUL photo ๐ŸŒŸ๐ŸŒŸ๐ŸŒŸ๐ŸŒŸ. You've got some great replies, to which I can add little. Yes, the diagnostic & treatment process usually involves all sorts of ambiguities & contradictions, for patient & physicians...it's a 1 step @ a time thing....a collaboration between you & your medic/s....it's not unusual for this process to take up to 7 years before the alround character of your version of immune dysfunction is reasonably well understood...during those years, your treatment plan meds will be adjusted & you'll get the hang of both when/how to liaise with your Drs vs when/how to self-manage stuff. Am so glad you're here...and I hope you'll keep us posted. Wishing you all the very best ๐Ÿ€๐Ÿ€๐Ÿ€๐Ÿ€

  • Not much to add, other than, beautiful picture and stick with it for you and your lovely girl. It is hard at first. As people have said. But you will find a level when things settle and things will start to make sense. You will be bombarded with information and tests but focus on that little girl. Welcome.

  • Hi Julietsmombless2015,

    Really sorry that you've had to receive this shocking news.

    I'm not sure that you've been formally welcomed into the LUPUS UK community. Welcome! We've got a free information pack for you. If you're interested you can find it here: lupusuk.org.uk/contact-us

    Additionally, we have plenty of publications for you to read through for reliable information about lupus. You can find all of these here: lupusuk.org.uk/publications. You might be particularly interested in 'LUPUS: The Symptoms and Diagnosis'.

    Hopefully after a short while on your medication you'll start to feel better. Plaquenil can take a while to kick in though so do persevere with it! Keep us up to date.

    George

  • Thank you I'm just happy he didn't say"you are crazy " and thats all ..Or"do you feel depressed??I used to always yes "yes ,yes I feel depressed because nobody is listening to me while I know there is something seriously wrong.I hope this plaquenil helps.

  • AMEN TO THAT! Blessings..

  • Like everyone else said... But also look for a rheumatologist who specializes in Lupus. In Canada they recommend Lupus patients take Plaquenil for life. I've been taking two a day for a few years now. It took 18 months to bring my ds-Dna down and it is lower but not normal. I feel much better. I can't advise about babies...see an ob/gyn and tell them you have Lupus and see what they say. Your kidney function and blood pressure are key concerns. There is no question that having my last child caused my Lupus to flare and it lasted three years but I would do it again in a heartbeat. You need more information and advice from experts. The good news is you're not taking chemo drugs or other stronger meds so maybe it's just a matter of waiting for the Plaquenil to work and unfortunately it takes a few months.

  • I already have my baby you cant take plaquenil while pregnant or so he said my doctor.Besides that I'm in too much pain with my ankles just walking with my own self carrying a baby I couldn't do it.

  • Hi Julietsmombless2015,

    Plaquenil is safe to take during pregnancy and in fact, studies have shown that it often improves pregnancy outcomes in people with lupus. Some other lupus treatments are not safe during pregnancy however. If you did intend on having another child in the future then you may want to read more about lupus and pregnancy. We have a booklet called 'LUPUS: A Guide to Pregnancy' which you can view or download from our website at lupusuk.org.uk/publications/

  • Best wishes . Take care.

    Be positive and enjoy baby daughter.

    Lol

  • Hello and welcome.

    Sorry you are having to struggle with the multiple symptoms but good news that it has been recognised you have an illness and starting treatment.

    Hydroxychloroquine (plaquenil) is a usual starting med.I am on this and immunesupressants plus some.

    It will take some time to sort out and regulate symptoms v medications but you will get there and feel a whole lot better and more in control yourself.

    Your daughter is a 100% bonus to your life so enjoy being her mom.

    You don't have to be the best mom in the world just the best mom you can be to her.In other words don't push yourself to hard as you need rest to get better so think of you both in the longer term .Those dishes probably could wait til later!

    Pace yourself and look after yourself.

    Take care

    Effie

  • Hi, the Hydroxychloroquine pill will take for awhile to absorb, that's the reason your doctor gives 3 months to take, then follow-up on the next blood test, he may lower the dose afterward. But, Hydroxychloroquine is the best med for lupus today, we're all worrying at first, but it's very helpful and you will feel better.

    My feet were hurting to walk and I purchased a pairs of Goodfeet support, combined with the medicine, reduce stress, get enough rest and a good diet. You should be able to control your symptoms.

    The most blessing that you're having right now is your beautiful daughter, she's the one give you all the strength to get through your illness and you will feel better in few months.

    God Bless!

  • I just wanted to add that plaquenil does take a long time to work. Some of my rashes and skin problems were better within a month but with other symptoms it took quite a bit longer. Now, 2 years on, I wouldn't be with it. I hope it works for you. And those dishes can wait. When your daughter naps, you must nap. I have three children, who were 5, 8 & 9 when I was diagnosed. Being older they know that I need to rest in the afternoon after school and they leave me to it. Bless them. You must get rest to get better. Best wishes.

  • She has your eyes! She's absolutely gorgeous, your little girl.

    Plaquenil twice a day for your symptoms is only the beginning. He should have put you on some steroids for a short while to bring you some relief until Plaquenil takes effect. But if your lupus is as severe as he says, you'll need a heavier duty drug to add to that. Still - at least he's finally started to medicate you for it.

    All the best to you and the little one, she's adorable.

  • I had an appointment with my kidney doctor for stones.He gave me Norco which is helping a lot. I can open my medication bottles without help.But this is just for while I'm passing my stone then it's back to severe pain.

  • Thank you everyone says she has my eyes,He told me to consult with my pcp about getting my tramadol increased.I'm on 50mg 3 times a day now.

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