Lupus Support Group

Ok so here I am. It's Wednesday the day before my 49th birthday. Tomorrow, I have 2 appointments, one with my Rheumy to get back the 1 million test results he did plus get the meds for the Lupus. I've been waiting for this day since before Christmas. Had to wait 2 months to get into the Rheumy, then had to get all this extra blood work done and wait another month for the text results. So basically it's been 3 months of waiting. So why am I nervous now? Sure for the first week after my MD told me that her blood work showed Lupus I was freaked out but then I accepted the one more thing to go along with my Bipolar. But tomorrow is the day. The final day. All the extra blood work was to determine whether or not I had anything else that would be working against my immune system before we start on meds to slow my immune system to try to control the Lupus. Well I already know there isn't anything else going on. My MD ran 40 million tests before the Rheumy did. I'm surprised I have any blood left. My anexiety is running really high today. I am having trouble sitting still. My mind is racing. Shouldn't I be past all of this? I thought I had already accepted this.

So on my 49th birthday I get to go and get my final diagnosis get yet another pill to take to go along with the half dozen I already take (I swear I could make a meal out of all the pills) then the instructions again about staying out of the sun, no more ibuprofen, to which I will find out why, then I'm sure more instructions. So that will be Appt. 1.

Second appt. of the day will be with my therapist. Which really I'm glad of since I'm sure I will need but will I have had time to process. Will I know what to talk about?

I want to feel better, I want to not be so tired all the time. I want to not hurt and not swell up. I want to not feel like I can't get out of bed and just have a half way decent day. Between the Bipolar, the Lupus and the Fibro I feel like crap most of the time.

Can someone please tell me if the meds for the Lupus will start helping soon? I just want to feel better. Even if I have to find it all out on my birthday will the anxiety go away and how long does it take to really accept it?

Sorry for the long going on. Just feeling off today.

Susan, I think it is understandable to be a little anxious right now. You have a big day tomorrow. As for lupus drugs, it really depends on what you take. If you end up on Plaquenil it can take a while to build up in your system. Plus, sometimes it takes a while to figure out what work best for you. We are all on a different combos of drugs. Try to have a good day tomorrow. Happy Birthday!

Alison

Susan, Happy Birthday! Hope things go well for you. It does take the meds some time to start to work and for me the first few weeks seemed a little worse with the med side effects (mostly GI) so I hope they kick in soon. It is also like Ali said and sometimes it just takes time to get the right combo. Again Happy Birthday....sorry you are spending it with doctors. Yuck! Have some cake when you are through.

April

So I guess what I'm hearing is that there could be combos for the Lupus and that it could take awhile for them to really work or at least for me to feel the effects. I appreciate the feedback very much...I have to say I was really hoping that you all would tell me they would start working within a week or two and that I would never again hear "the right combos" It took forever to find the "right combo" for my Bipolar. Not looking forward to that again. Oh well when life throws you a curve ball you swing the bat and hope you hit a home run. So I'll try to keep good thoughts and keep going. Thanks again for your input and response I appreciate it more than you know. Thanks for the birthday wishes as well!!

Susan....Happy Birthday tomorrow.....I wish you all the best at your appointment....just tell your doctor like it is...be straight forward. Please keep us posted.

Eva

Thanks for the early birthday wish and just want to get the appointment over get started on the meds and try to get moving on with life. The later this nite gets the more anxious I get. I doubt I get much sleep. I'm gonna just go tomorrow and do what I need to do and hope for the best.

I always think positive and I know that it will go well for you tomorrow....my thoughts will be with you.

Eva

♫ Happy Birthday to you ♫♫ Hope your appointments go great today and that you have a wonderful day I am thinking positive for you!! Let us know how your day goes. ((HUGS)) ~ Julie

Well here is the update. Went and saw the Rheumy today. Definately Lupus. All bloodwork was positive. Liver tests showed some sort of mild elevated something. Supposed to keep an eye on it. Directions: No being in the sun at all, no Ibuprofen of any kind, stop the anti-depressant I'm on and start on cymbalta and one other but I have to get them from my pdoc who treats my bipolar. Didn't tell me what I could take for any headaches told me to talk to my MD. My boyfriend doesn't like him. He's the only one around that takes my insurance though so that's who I have to see. Got overly frustrated with the pharmacy because it took more than 45 minutes to get 1 prescription filled. Plus I had to pay for it out of my own pocket cuz my insurance only pays for 6 a month and since I had bronchitis twice this month I can't refill anymore through insurance until April. Of course the one I needed I have to have. I could only get a weeks worth cuz the whole months worth is more than 100 bucks and I don't have that much. went to the therapist and rambled on and on for an hour about so many things plus I cried about stupid crap. My boyfriend had to work tonite. Really wished he could have been home. So all in all I had a pretty crappy birthday. Oh and they put me on Plaqunil. Since I can't take Predisone he said if I couldn't tolerate this then it limits what they can treat me with. What the hell does that mean? I was just trying to absorb all this and forgot to ask? Does it mean that if there isn't another drug then I'm just screwed? I did ask my therapist that question and she asked me why all the negitivity. Well maybe it's because since I started on all the Bipolar meds alot of meds I could take before I can't take now. Hell I even had to stop taking the antibiotic that I'm on for my bronchitis. It's on my list of drugs I'm not allowed to take anymore. So there you have it. Sorry for whinning so much. I'll be better tomorrow I think. Thanks for listening though.

I am sorry you had such a crappy Birthday and sorry about everything else that went totally wrong yesterday Did your tests show elevated Liver Enzymes maybe? It will take some time for the Plaquenil to kick in but hang in there I was put on Prednisone and I can take it only it doesn't do anything for me, either does Solumedrol IV. I am one of those people that also wondered what I would be treated with if I ever went into a bad flare again. My Dr. said there are many different approaches and not to worry.

We are all here for you. Vent all you want because we all understand.

Julie