Hi Babs, I haven't been on much lately either. It's great to see you here....
I"m so sorry to hear about Carol. I don't post a lot anymore, but I do stop by to see how everyone is. Carol my prayers are with you, my friend. I'm sending lots of love and prayers your way....
Stacie, I am really sorry about your flare. You sound so miserable. The work thing is a hard call. Maybe your doc can write a letter for a leave of absence for a few weeks or so to see if that helps....
Hi and welcome. There is nothing worse than being sick and knowing something is wrong only to have doctors tell you that there is nothing wrong. It can make a person pretty crazy. I'm sorry that you...
I agree with Stacie. It doesn't sound like your curent meds are enough to keep your disease under control. Be very up front with your doc about how sick you feel. Hang in there....
Robin, check with your rheumy about being on mtx and an antibiotic at the same time. I was told you should stop taking mtx if I had to be on an antibiotic. Definitely call your rheumy to find out and...
I agree that it sounds like raynauds. Bill gave you some great information and I really don't have anything to add. I don't need any additional treatment for my raynuads - I just make sure to keep my...
I agree with all the others about finding a good doctor. When I started taking prednisone, I needed something for my stomach. My stomach got so bad I felt like it was being ripped apart and scraped...
Raven, I'm so sorry the chemo is having this effect on you. Hang in there. Is there anything the doc can give you for the sore mouth? Make sure you are getting plenty of rest. Take good care of...
Hi and welcome. I'm sorry you are feeling so miserable and that you aren't getting any relief. Some people with lupus do tend to get sick more often than healthy people, but I don't think you should...
I don't know of a doctor in MI either, but Stacie had some good suggestions. IT is really hard to find a good doc who looks at everything as a whole and not just certain pieces like labs. Lupus is SO...
Hi Bird lady and welcome to Healing Well....
I'm sorry about your daughter's diagnosis. You've gotten great information. There should be ways for her to still do most things she wants to do swith the UV protective clothing and umbrellas. etc,....
Hi Mkayla and welcome. I'm sorry to hear about your diagnosis but glad to hear that your symptoms seem under control for right now - I hope they stay that way. My symptoms started with some very...
I don't think you are over reacting at all. The bad thing about these kinds of illnesses is that they are often "invisible" to other people and it's hard for some people to really understand the...
I agree about calling your doc since chest pain is nothing to mess around with. The other thing I thought of when I read about your pain was costochondritis. It's very painful and hurts really bad...
(((((hugs))))) I'm so sorry you are going through this rough time - lupus likes to throw all kinds of nasty curve balls and you never know when they are coming. I agree with Stacie that this could...
I'm sorry about the depression - it seems to go hand in hand with this wretched disease. I'm glad you talked to your doc and I hope the adjustment in meds helps fairly quickly. Hang in there - we are...
You described a lot of the symptoms I first had when I started getting sick. I just didn't feel right and felt like I had a flu that I never really got over. The problem is that all of these symptoms...
Ginny, I had some weight loss right around the time of getting sick, but have only had weight gain since prednisone. I pray the med changes get things under control. I know how sick you were in the...
I was going to call this morning, but thankfully I felt quite a bit better when I woke up. Abby's flu didn't last long either, so I guess I got lucky. I do need to call my rheumy though because I'm...
Thanks Kay. Barb, you are in my thoughts and prayers. I'm so sorry you are back in the hospital....
I'm glad you are seeing your doctor tomorrow - she should be able to figure out what is going on with your knee and also run some tests to see if maybe you are in a bad flare up. I'm sorry to hear...
Well, I thought I had escaped getting the flu, but I'm pretty sure I have it today...yuck, I feel awful. Does anyone know when you should call your rheumy? I hope I'm better soon because I don't want...
Thanks. Pat, you had some great ideas and a lot of them I hadn't thought of. We are all doing lots of handwashing and I am using plenty of hand sanitizer. I hadn't thought about the towel thing, but...
So far I'm tollerating the methotrexate pretty well (yay!). I'm on a very small dose still and will go up to 10mg this coming Saturday. Today my daughter got the flu, so I'm really stressed about...
It stinks that you are going through all these ups and downs of prednisone. Do you know if there is any reason that you are not on a daily maintenance dose of prednisone? I know some people are on...
Hi wees, I also wanted to add my welcome. I'm sorry you are going through this. The whole thing can be very overwhelming, especially when you do not have a diagnosis. Sometimes it can take a while to...
Ginny, your flare sounds terrible. I'm so sorry you are going through this. I wish the pred was helping more. Is there anything else the docs can try to get your flare under control? Hang in there...
HI Buttrfli. I wanted to add another welcome....
Sounds like your new rheumy is good and thorough. It can make a huge difference when you find someone who will finally listen to you and cares about finding answers. Let us know what you find out...
I can only tollerate a low dose of neurontin - more than 200-300mg per day does weird things to me. I wasn't sure how much it was helping me so my doc said I could try going off of it, but I did have...
I'm sorry you ended up in the ER. I"m another one who puts off going to the doc. I'm not sure why so many of us do this. I know some of mine probably goes back to when I was in diagnosis limbo and...
Definitely talk to your doc about it. Like Lynnwood said, most of our meds come with a warning not to drink alcohol with them....
Patty, I have also had some nausea when trying to decrease prednisone, especially if I did it too fast. On top of the nausea I also just felt kind of flu-ish. How fast are you tapering? Hopefully...
Ginny, I hope you made it through your wedding okay. I bet you are not enjoying the 50mg of pred. The highest I've been on is 20mg and even that made me feel yucky. Hopefully you have been able to...
Thanks for the replies. Now I'm not sure what it is. Yesterday morning it was extremely painful, red and swollen and felt broken, but by the end of yesterday the pain had decreased a lot and today it...
Last night in the middle of the night my big toe starting hurting really really bad - felt like it was broken. It is swollen and red and very painful to touch. I looked up big toe pain on the...
HI and welcome. I don't have a lot to add to the great info that Lynnwood gave you. As overwhelming as it can be, it can be kind of a relief to get a diagnosis. So many of us were made to feel like...
Well, I took my first dose last night and I seem to be tollerating it okay. I think starting at 5mg was a good idea. I don't think I'll be so anxious about taking it anymore....
Hi Pepe and welocme. I agree with the others about getting your lupus treated. If you are not comfortable with this rheumy, keep looking until you find someone you really like. I finally found a good...
Hi and welcome to the forum. I don't feel comfortable answering your question since I am not a doctor. A pharmacist would be a good place to start. You could call your pharmacist (or any pharmacist)...
Thanks everyone. I talked to my rheumy about it again today and he was very reassuring and spent a lot of time talking to me about my fears. Just to ease my anxiety he said I could start out at 5mg...
Oh no. I don't know what I'd do if my doctor left. I really hope you find another really good doctor. Would your current doc be able to recommend someone to you?...
Ginny, I'm sorry you have been through so much. The drop in platelets sounds scary. I'm glad you didn't end up needing a transfusion. It sounds like the lupus is back in full force which really...
Patty, that really stinks about your stress fracture and bone loss. The prednisone is such a double edged sword. I hope the fracture isn't too painful and doesn't take too long to heal....
Wow, thanks for all of the replies. It helps a lot hearing how the mtx has affected others. I'm mostly scared of feeling really sick, but it sounds like that is not happening for a lot of you who...
Thanks Lynnwood and Fran. I'm starting to have a lot of anxiety about it, but I know some of that is because it's late and I'm tired. I have just read some stories online about people who are sick...
Hello everyone. It seems like forever since I've been here - I can't even remember when I last posted. I feel bad for just kind of disappearing like I did. My life got so busy and I was dealing with...
I just wanted to write a quick note that I probably won't be online much this next week or two. Last week I had actually started to feel better and was starting to be able to do more. Then, Monday I...