I just went to the urologist thinking I had bladder and urethra issues only to learn that they are caused by yet another autoimmune disease, lichen sclerosis, which causes a breakdown and fusing of...
Oh, I am so sorry about your father. You must have so many emotions now that I can't imagine having to do with lupus symptoms at the same time. The sooner you can get in to see a rheumatologist, the...
Don't worry about becoming "Glove Girl." I have to wear them all winter and carry them with me when I go to overly air-conditioned rooms in the summer. Only a few people have commented on them. My...
I'm so sorry, mrskled. I hope you have other people in your life who give you the support you need. Of course, here on the forum, your fellow lupies are very generous with their encouragement....
FMLA is Family Medical Leave Act. If your company employs more than 50 (I think it's 50) people, they have to grant you leave for your own medical issues or those of your immediate family members....
kimberleyrenee- You're right. Going off prednisone doesn't seem worth it to me. However, I'm a compliant patient and my rheumy really, really doesn't want me to take it indefinitely....
I am generally very sympathetic to other lupus/MCTD patients. Some people are disabled and absolutely cannot work. Some of us, like me, have to get up every morning and go to work. Some of us really...
I am into my second week of no prednisone. I went VERY slowly. My last dosage was 1/2 mg a day for three weeks. Going that low really sent me into a flare. Then it was amazing how awful I felt after...
Yes! Psoriasis is one of my symptoms. Many lupus/MCTD patients have skin disorders. There's even a specific AI disease called psoriatic arthritis. I had to add a dermatologist to my growing...
I'm so sorry I didn't see this post sooner. Please call your doctor back. I don't want to unnecessarily upset you, but I couldn't just ignore your symptoms. They match the symptoms my doctors were...
Hi there...I am the original poster for this thread two years ago. I am sorry you are dealing with possible MCTD at your young age. Prednisone helped me immediately. My doctor also added two...
thank you, redrose...
thank you so much, lynnwood and aimsgirl, I will go ahead and make the appt with the pain doc This week's taper to 9 mg has my fingers swelling a little bit, knees hurting some, but I'm OK....
Thanks for reading. I'm disappointed and sad no one commented. I'm not mad. I just think my friends IRL are really tired of hearing me talk about being sick so I stopped, and I hoped someone here...
I'm perplexed this morning. I went to my rhemy last week. He thinks my connective tissue disease is controlled by my antimalarials (Plaquenil and Quinacrine) and therefore wants me to get completely...
Welcome to the forum. Don't feel bad about not being "as sick" as some others. No matter the severity of our disease, we care about others or we wouldn't be visiting here, and we certainly understand...
Thanks for your replies. I left work one day with vertigo/nausea so bad that my principal (I'm a teacher) had to drive me home. Another time my husband was able to come get me. There are many, many...
Have any of you quit your jobs because of lupus/MCTD? Or transitioned to part-time work? When did you know it was time to quit?...
Since I think what you're describing with your fingers may Raynaud's disease symptoms, icing your hands would be quite painful and dangerous. Raynaud's often accompanies autoimmune diseases. The...
Do you take many sick days off of work? I take days off to go to the doctor. I go to work sick so much that I don't feel guilty taking a whole day for a morning dr appt. I have left school (I'm a...
So sorry you're getting the run around. With all your symptoms, some doctor somewhere surely will take notice. I hope you feel well enough to go to the grocery store soon. If you feel that badly,...
Welcome to the forum! I'm glad you found us. There are great encouragers here, and I hope you will find some fellowship among us....
Welcome to the forum! I'm so sorry you have to deal with all this, but you are in good place for support here. Every time I "whine" on here, somebody tells me it's OK. /community/emoticons/wink.gif...
You guys are great. It really does help to have someone out there who understands. My pcp gave me antibiotics and an analgesic for my UTI yesterday. He also told me that my heart monitor confirmed...
Thank you so much for your encouragement. My latest bloodwork reveals that I now have something called a low glomerular filtration rate. It's a 78. Normal is 90. Evidently my kidneys aren't working...
Hi, everyone I'm really struggling today. I told my husband this morning. "It hurts to pee. It hurts to poop. My heart flutters all day long. My leg muscles are weak. I get nauseated every day of my...
I'm having trouble with brain fog as well. I, too, cannot recall words I'd like to use. I will have the concept or definition in mind and cannot come up with the word. It's very frustrating as I have...
My doctor says the plaquenil is to help with that "blah" feeling and fatigue, so I don't think the medication could be making you tired. However, he also told me not to expect results from plaquenil...
I lost 14 pounds the first three weeks on 15 mg of prednisone. Very rare. But my dr scared me to death with stories of moon face and a big belly if I didn't completely eliminate all sugar. I did it...
Thanks, Bill. I will be careful. I'm motivated since I have a college reunion to attend October 24th. I know that's vain, but I REALLY don't want to show up with moon face. I think you're right-15 mg...
Thanks, everyone. My dr said "the first thing we need to try is returning to the original prednisone level (15 mg) and see what happens." He didn't want me to come in yet. So we'll see....I hope I...
I, too, have MCTD. You can check my old posts for my story. I was diagnosed in Jan 08. Fortunately my rheumy is treating me just as any of his lupus patients and not waiting to see if any of my...
I've worked my way down to 5 mg of prednisone after starting on 15 mg in January. Now I'm having increased levels of symptoms - more intense joint pain, my ring finger joints are so big I have...
I was hurting last night, took a Darvocet, and did fine. This morning I took another Darvocet with all my other meds at breakfast. It's quite a cocktail, but doesn't upset my stomach. Now I'm at...
Welcome to the board. I have MCTD also. My ANA was speckled and 1:1260. I have vitamin D deficiency and anemia. My oncologist just put me on 325 mg of iron three times a day, and I'm so worried it's...
I've been allergic to sulfa drugs all my life. My mother says that, as an infant, I broke out in a horrible rash all over my body when given sulfa medication....
Welcome! I have MCTD, too. My story is in the "Newbie with MCTD" thread. You and I were lucky to get diagnosed so quickly. Hang in there. I think we're in for a long journey, but it's not uncharted...
thanks for the encouragement and advice, jules and redrose. I am currently down to 9 mg of pred, maintaining my weight loss (it bottomed out at 14 pounds). My husband and my mom think I shouldn't...
Lynnwood-Thank you for your reply. I will e-mail my dr and tell him what's going on. I just finished my period so it's not PMS. (Although I don't rule out hormonal issues.) I had extreme fatigue...
I've been on prednisone for a month now, and my dr wants me to start tapering. I began at 15 mg and this week have been taking 12 1/2 mg. Should such a small amount make much difference in my...
Hi, everyone! I just joined yesterday and look forward to getting to know all of you. I was diagnosed with Mixed Connective Tissue Disease three weeks ago. I first noticed several lumps on my neck in...