Now is it Lupus?

What can I say, so many run arrounds I can not wait to see what they finally decided what is going on. I dont want to have anything wrong, but knowing what is wrong would allow me to know how I should live my life.

Saw the kidney doctor today and now he isnt saying its not lupus. His whole attitude was a lot different this time. Since I went down from 20mg of prednisone to 15mg my sed rate went from 6 to 23! He was very shocked on that. There goal is still to completely get me off of it to be able to see the whole picture. And see what my labs say. Its was nice to actually have my labs show stuff so he could see that there is truly something going on. I am now at 10mg and will see him in 3 wks and then I will go down to 8mg. My labs also showed some protein in the urine so he said that can be seen in kidney nephritis which I was diagnosed with in June by a kidney biopsy. He isnt sure if its kidney stones, kidney infection or both. but boy I feel like someone is stabbing me in the back. Its been so bad I could cry! Also my BP has been super high like 160/100's so now I am on blood pressure meds. The nurse today was really shocked at my BP not sure what it was but she was very quite about it. SIGH! My night stand is starting to look like a drug store! ;) And on top of all that my iron % (i think is what it is called) is low but my hemoglobin is 13 which has improved so hes not doing anything with that right now. AND my B12 is low so now I am on B12 injections once a week for 4 weeks and then once a month..... SIGH! I just so want to know what is going on. Its been such a long 7 months of this and that. They will also be running tests to see if I have myasthenia gravis. I sure hope not.... Right now all I want to know is something so I know what to expect for the rest of my life. But my main doc. is still thinking lupus. And obviously there is something going on. I am just so glad my labs showed something. It makes it a whole lot easier when theres labs backing up how you feel.

My moms work also put on a fundraiser for me. Which went so well. I was BLOWN away by the turn out and everyones kindness. I was able to pay off a few bills and splurge and get my self something. :) I was also able to get to meet a lady in town that has lupus. She was so sweet she took time out of her day to come speak with me personally, that meant so much! The local paper also did a story of my journey so far and the fundraiser. So I am glad I have been able to spread the awareness of lupus to those who don't know what it is. Many people look at me weird when I say lupus and ask what it is. I am happy that I can be sharing and spreading the awareness of lupus. It was so sweet many nurses at the hospital wore stickers with wings on it that said Warriors for and then had my name! I have truly been blessed by so many people, people I dont even know have done so much for me. It has made this journey so much easier.

I am also so thankful for this support group. I know I can come here and vent. Its hard to vent to people who don't know whats going on and know how you are feeling! So thank you all for your support and kind words! Hope you all are doing well and are staying warm (for those who live in the cold states) :)

One thing on the journey with an autoimmune disease is to learn to live in spite of your illness. You can have a full and active life while learning how to manage a chronic illness and that is what lupus is- a chronic illness. Don't let the fear of an illness incapacitate you If your kidney biopsy showed nephritis I am not sure why you keep believing there is no kidney disease- its there the biopsy didn't make it up. But its not the end of the world You have just joined the ranks of those who need to be medically monitored A HGB of 13 wow I would give my right arm for that- mine is currently 8 - on the road to another transfusion. And a sed rate of 23 is normal so is actually good news at this point since you are tapering your prednisone. Not all is gloom and doom- rejoice in the blessings you have

I am slowly learning to live with it. I am working with a disability center to help me to continue attending college. Its been a hard adjustment but I feel like I am slowing getting the hang of it. I dont know why all the docs but my PCP don't think there is anything wrong with my kidneys. I am apparently so good at faking it that I can fake a biopsy!. lol! We tease about it, I have learned in a way that if I cant make fun of my illness and some of the things I go through it just makes me more down. I am so sorry to hear about the need for more blood! That is no fun! Mine was at a 9 so we were shocked to see it at 13! Hope you can get yours back up. Take care! :)

Your biopsy can be off but you can still have normal kidney function so they are being truthful with you. My kidney biopsy was made into a teaching slide for medical textbooks- I always knew I had severe damage BUT they have continued to function for more than 40 years. Moral of the story is that you can still have a normal life even in the face of a chronic illness. and an abnormal biopsy does not equate with dysfunction

My heart goes out to you, truly. It is a lonely journey and not knowing exactly what you are dealing with becomes scarier then finding something! I too at times wish they would find ONE thing that we could focus on but my body seems to jump around with symptoms and lab results. The latest being ....legs swelling and aching the longer I am up. First it was numb , burning feet and now legs. All I get told is to wear compression socks and nothing they can do. sigh..... It sounds like you have support all around you. That validates that you ARE going through tough times. Stay strong.

I definitely understand the frustration it seems like I went over a year feeling like I was dying and not understanding why I couldn’t get out of bed… I was first diagnosed with fibromyalgia and with all those meds I still had issues… My Ana is always positive and always pointed to sle and my sed rate isn’t high but my CRP and other inflammation tests are high even today being on plaquenil and mobic… My joints hurt so bad and I ended up needing knee surgery but my fingers wrists and ankles swell often… The meds have made it somewhat better I’m just thankful that’s as far as it’s gone and the lupus blood tests comes back with indeterminate levels but finally my rheumy put me on the plaquenil and the butterfly rash and swollen joints went down. I pray that each of us can get it under control. It’s so hard to explain because it’s so different in each person… Good luck finding out a true diagnosis but it can take along time and be trial and error I still change my meds monthly

Right there with you. I guess my ANA came back "normal" (I don't know exact numbers yet), but my inflammation so high, and with other symptoms rheumy still going with lupus....for now. He switched me from MTX, after only 3 weeks of it, to sulfasalazine. Just began that yesterday... feeling pretty crappy today. Idk if it's from the switch, or just the disease. Ugh. I just wish I could get a full diagnoses so I can learn exactly what I need to be doing too. Tired, frustrated, and just Blegh. Good luck too!

Thanks all for understanding! Ive been feeling super crummy for the past two weeks and even more so the past two-three days. I tried eating yesterday and about got rid of it. So today is back to the sprite and broth. I am now down to 10mg of pred, and I am not sure if thats why I am feeling so bad or not. See my doc monday and I can not wait to see what he says! Hope you all have a great day! :)

Ya, I'm suppose to be down to only 20mg of prednisone daily, but if I don't take 30mg in (10mg every 8hr ish), I can just feel my joints swelling. So I made my own decision to stay on 30mg for now... I'd rather not be in worse pain... but hopefully this new drug well eventually replace the prednisone. Idk if I'm making the right choice completely, but like I said, pain is the deciding factor for me. I'll talk to my PCP and rheumy more about it in the next coming weeks at appt though.

Just food for thought...if you have enough prednisone to last til next appt, and taking one more will help the sick/pain... Idk. Your choice obviously. I also say this bc it seems one of the things I learned from this site is you know your body best, and to be your own advocate for your treatment. :)

Thanks for the tips! I see my PCP on Monday thankfully. I know I will be struggling through the next few days though. They want to get me completely off so they can see the whole true picture of my illness. UGH! I feel like a guinea pig. lol! ;) I dont know if I am going to make it.... Guess we shall see what they my PCP says monday.

Hi!, staying calm is the first step! The second is waiting , then of course the result of knowing being the third! I was you and now there is a totall change from aug.2010-feb.2011,when my doctor said , "you have Lupus!"Which to this day he is the same doctor and we have built a VERY good relationship! And not forgetting his assistant and also the nurses -oh the gyn. It may seem like you are living in a nightmare now but hold on and Let them take control and give them the time and space to do whatever they have to do . Yes ,it is hard -you don’t have to tell me, I would cry everyday for some relief from pain, stress and just feeling like I wanted to kill myself ! But the wait was so relieveing, just to know I fought for that day for weeks and Now my life turned completely around and Now I say , “I have Lupus and Lupus DON’T have me!”. Am not saying all the days are good nor all the days are bad , I have learned that am in control and schedule (pace) myself on the day to day base now -(especially when the weather change comes-it drive my body crazy, smile)! I do urge you to stay relaxed as much as possible and remian stress free! The flares are undescrible! But when you do get the finial words/results, your ease will be really comfortable , trust me! So right now TRY to focus on anything other then that doctors and the tests? In time the doctors will have the news for you! Just know that we are here to confront and support the moments when you want to vent , talk, or just look at some of the moments we ALL go through with Living with Lupus, You are not ALONE…Beverly L.

Thanks Beverly L!!! :) I am one that always likes to be on the go and doing things, that is the hardest adjustment for me. learning to slow down and take time to rest.