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Thread: What a ride!

  1. #1
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    Default What a ride!

    Guess I'm a little shy, because I've tried to write this a few times now! The whole story seems a little crazy. I've spent quite a bit of time looking around over the past several months. This site has already been very helpful. At this point I'm not diagnosed with lupus, but I do think lupus is the closest thing to my condition.

    After several years of night sweats, tendency to overheat easily, bouts of depression, constantly being tired, and feeling as if my ability to remember had flown the coop, I'd simply decided I was lazy and crazy. The onset of most of my symptoms coincided with a big move and starting a combined MD-PhD program. Med students are known for being hypochondriacs, so my symptoms were easily explained away. Finally, it became too much for me. I left the MD-PhD program. A month or so after, I couldn't eat, lost 20 lbs in a month, developed arthralgias and hives, and finally a 6 inch mass was discovered wrapped around my aorta and renal vein. Thankfully it was just starting to impact my kidney, so there's no permanent damage! It took a surgery and several different doctors, but eventually I was diagnosed with idiopathic retroperitoneal fibrosis. It's incredibly rare, and I'm the wrong age and gender, but hey, why would I do anything normal!

    The doctor put me on 60mg prednisone, tapered after a month, and 2000mg cellcept. It worked! My mass is gone, just like magic. My ANA is still 1:2560, have positive ds-DNA, beta-2 microglobulin, and p-ANCA, but my inflammatory markers are back down.

    I'm going back to the rheumy. After a second positive ds-DNA test, I think I qualify for lupus. I guess it doesn't really matter if I'm diagnosed or not, as I'm already on cellcept, but I think it would help my head. I'm still fatigued, achy, and a little bit overwhelmed. I think it would help to talk to a rheumy occasionally. Plus I have a lot of questions about medications for fatigue, reactions to the sun, and diet. I'm going to keep snooping around here, because I'm sure it's already covered, but can the sun make someone tired and achy, even if they've never gotten the butterfly rash? Oh, and my C4 has been consistently low, despite medication. Does anyone else have that problem? Is it anything to worry about?

    Wow! That was a really long introduction! Oops. Hi.

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    Hi kmosa! Keep snooping and enjoy this wonderful family here. I have received tons of help and validation here.

    Wow I had a mass grow in my lymph system under my ARM pit. It hurt for 6 months. It sounds like you are on the right track. Hey if your AI hits your thyroid it will cause all your mentioned symptoms. Has that been checked for antibodies? Hoshimotos thyroiditis is common in lupus. Just a thought.

    Gosh it sounds Luke you have been through a lot. I'm so sorry. We all "get it" here. It's a long rough road for us, but it sure is nice to have loving friends walking with us. So nice to hear from you!

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    hi kmosa. welcome, glad you became a family member, not just a snoop. lol

    yes the sun can do that.
    many people get lupus without getting the butterfly rash.

    everyone is different, and reacts differently.

    please enjoy reading what others have gone through. we are all here to help each other.

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    Hi Kmosa,

    Welcome to our love family of WHL and it's nice to have you with us plus you'll learn so much from the threads, as they all contain different symptoms to different diseases linked to Lupus.

    It sounds like you've have a rough time, fatigue/aching and also tiedness is large symptoms with Lupus we all go through it daily besides the foggyness of the brain i can't forget that one, as it's a terrible issue with alot of member's.

    The sun does react to us differently to the extent of what disease you have and if it's irritating you i suggest you sit in the shade and if the rays of the sun start to affect you get indoors but otherwise i do suggest sunblock and covering your body well, besides an hat and glasses, it all sounds abit extreme but if you don't want to suffer this is what we have to do.

    You could always ask your doctor for cream but when a rash/flare comes out the best thing for moving it is steriod based creams.

    I do hope you enjoy the site Terri xxx

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    Yep love my steroid creams. I am also sporting that movie star look of hat, sunglasses and sunscreen. Even in the shade on a sunny day I will get sick from the indirect rays. I am now a fragile flower. I used to be a rock(grin).

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    Welcome! You've come to the right place! You'll find answers and lots of support here as well as support and a lot of laughs! Check back often, we're always up to something!!
    "I'm going to get healthy or die trying"

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    Hi Kmosa,

    How are you feeling now and i hope your days a less pain free one. xxx

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    Thank you all for the welcome, and thank you especially, Peridot_Gem, for checking in on me. Things are going ok. I developed an infected tooth, and may have fractured the root, or something like that. Those things hurt! It's going to be pulled tomorrow, and I'm really looking forward to being able to recover. A part of me wonders if this has anything to do with being on cellcept, since it is an immunosuppressant. My teeth are horrible anyways, so it's likely just my bad mouth.

    I'm actually not very achy right now. I can stand up without any pain. Recently I've had some trouble with food not emptying from my stomach, plus some seemingly random stabbing pains in my chest. I have to admit, those scare me a little. I've been putting off contacting my doctor about these and other symptoms, because I feel like I am just complaining. After reading so many similar stories on this site, I finally decided to email the specialist who is taking care of me for retroperitoneal fibrosis (rpf). He's not a rheum, but did say both lupus and rpf are hyper immune responses, and while cellcept helps reduce hyper immune activity, he suggested trying a short course of steroids to see if some symptoms go away. He also said different people metabolize cellcept at different rates, and suggested measuring levels of cellcept in my blood to determine if we should increase the dose. I don't want to go back on steroids, not yet. If I start having trouble standing up again, I'll probably try the steroids. It's frustrating being 29, but moving like a much older woman. It's also hard not having enough energy. I used to really be able to hit the books hard, and remember a lot. My memory is much better now than it was before steroids and cellcept, but I'm afraid to start med school again, because I am afraid I won't have the stamina. But if I don't do it soon, I won't have the option of going back to school. I'm not even sure I do now.

    This site gives me hope though. It makes me realize how many strong people there are posting on the message boards. You've all been through a lot, but you keep going. You have built a wonderful and welcoming community.

  9. The Following 2 Users Say Thank You to kmosa For This Useful Post:

    Peridot20_Gem (06-21-2011), steve.b (06-21-2011)

  10. #9
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Kmosa,

    Welcome to our group! I was diagnosed with SLE (among other things) back in 2004. Many of your symptoms resemble my own from back then. Even though your current specialist isn't a rheumo, he/she sounds pretty well informed. The short course steroid regimen can be really effective in knocking down autoimmune disease activity without too many of the bad side effects associated with taking the stuff long term. Short term, it can really work wonders on inflammation.

    I understand how you feel about getting on with your life's plans and going back to med school. My advice would be to just be honest with yourself. If you want to tough it out, and go back, then I say go for it. But if you honestly think that you will not have the stamina, there's no shame whatsoever in making a realistic and practical decision to not go back. All of us here have had the autoimmune wrench thrown into the gears that are our goals and plans in life. Some have been able to stay the course. Other people, like me, have had to choose an alternate route through life. But, sometimes the alternate route can be just as good as, if not better than the original.

    Only you know what is right for you. Don't worry about those who may question your decision, whatever it ends up being, because they don't have to live in your body, you do.

    Once again, welcome,

    Rob
    Last edited by rob; 06-21-2011 at 07:30 AM.

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  12. #10
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    Hello Kmosa,

    Wheather you have a bad mouth or not..that tooth needs removing anyway because with Lupus you can't afford to have infections because it can start other things off, i've also looked up about teeth for you and it all it say for cellcept on quite a few links is to floss your teeth regular and also by brushing.

    I'll add info on cellcept for you and also the link.

    The pains in your chest may be coming from the cellcept. I know how your feeling with this lot going on at 29 because ailments to my Lupus kicked off properly at 18 and stopped me working and lately the lupus is having some right fun with my body and i'm now 42.

    Thank you so much for the lovely complement about the site and we're very close knowing that each one suffers so much and it's lovely having you aboard with us.

    Do takecare Love Terry xxxx

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