I was diagnosed a couple weeks ago and wow it has already been a ride!! At first I felt relief that I finally knew why my body/mind didn't feel well. Then I think it started to digest and I was teary for a few days. Now the questions are starting to pop up. It is a scary time because everything in my world has changed. I just got married in March and we were trying to have children. That has halted until my body starts feeling better. I am wondering how long it will take for the medicine to work.
Does anyone have any good advice to provide me with coping with the feelings of worry about "What is going on in my body" when you are first diagnosed?
I'm Rosie. Seems like we're neighbors in a way...you live about 4 hrs from me. I'm in Rock Hill,SC
What medicine(s) are you taking? If you're taking plaquenil (as most of us are) then it could be as little as 3 months or as long as a year (that's how long it took me) for you to feel its effects. I know its hollow to say, "try not to worry", but reality is, this disease affects people in so many different ways. What I or anyone else deals with may be different from what you deal with. The good thing about this group is that no matter what new symptom, worry or question you have, there will be lots of support and even several people who are having to cope with the very same thing you are. Don't be a stranger. This is a judgement free zone with lots of great resources :)
Awww, thanks so much Rosie! People call me Rosie too:) Nice to meet you, neighbor!
I am on Plaquenil. I have been on it for almost two weeks now, so I will be patient:) I was looking at the calendar and I couldn't believe it has only been 2 weeks since I found out I have Lupus! It hasn't quite disgested all the way.
Thanks so much for the support! It is so nice to have people reaching out:)
Congratulation on your marriage. The first year my emotions were terrible I read and educated myself and continue to do so. Anna a is great at posting info for us.
Welcome to the group, I was officially diagnosed one month ago today, although Ive suspected I had it for about 2 months now. You'll meet lots of nice & helpful people here. This group has been a God send to me. Im also on Plaquenil, and havent noticed any difference from taking it the last month. I'm also on Prednisone, that seems to help a lot with the inflamation. I had a Dr appt today and after a month of the Prednisone, the Dr is cutting the dose in 1/2 for the next couple weeks and I should be off it soon. The thing that worries me is I wonder if the inflamation will come back once Im off it........ Guess we wait & see.
Your not in this alone, yes its life changing but we have to learn to adjust our lives accordingly.
Hi Ann A, I would be very interested to see the best way to chart weather, food and eye if you could share please? Cheers Amanda
Welcome Nates tired mum!
Ann A. said:
Dear Rose,
I was dx 46-47years ago. My oldest child was an infant. 6.5 years later my second child was born. Would you like information about things that you can do while you wait for the medicine to work?
How to protect yourself from sunlight and other sources of UV?
I am so pleased to see you get so many positive responses and welcomes. This is a great group. I don't know if you are also taking prednisone, however many times docs prescribe that as well as the plaquenil as the prednisone can have effect much more quickly. It is usually a short term med while the plaquenil is building up in your system. With those 2 and CellCept, I began to feel better, if not physically, certainly mentally. By that I mean the lifting of the "lupus fog" to a degree.
As difficult as it is to not worry, stress is NOT good for you. Listen to your body, rest when it tells you to, eat when it tells you to, etc. Keeping a journal of good and bad days and the activities of those days can help you to avoid stressors.
Right now you are just trying to wrap your mind around it, I know. And quite honestly if you were in as deep a "fog" as I was nothing will make sense for a while yet. You made the step to find us which means you are a fighter and strong and want to find the best way through your own journey with this disease. Just know we are here to take that journey with you.
I am a new victim...uh, diagnosee...as well. I was diagnosed three weeks ago, today. I had suspected it for more than a year, but couldn't convince my doctor to start testing. I have been on plaquenil (have not taken prednisone) since my diagnosis. I was told it could take several months before I would start feeling a difference. I don't know if it's a mental thing or the fact that I was feeling SO terribly bad, but I have already noticed an improvement in the last few days. I still have a rough start in the mornings, and tire quickly, but am otherwise feeling almost normal for the first time in years! I happened upon this forum during my research saturation, immediately after my diagnosis, and have found it to be a real blessing! It is such a relief to know that there are others who are going through what I have been experiencing, and that I am NOT losing my mind! I have found this group to be so supportive and helpful! It was like finding another family to talk to when your everyday family doesn't really understand what you're feeling!
Lots of luck and many blessings to you...and best wishes and prayers to you with starting your own little family!
Ann, I would love the information on what I can do while waiting for medication to work. Thank you so much for the youtube video as well and for giving me hope on children!:)
Puprle Butterfly – Thank you:)
Flutter – Thank you for the information! We were diagnosed somewhat close, so it will be interesting to compare notes. Thanks for the support!
De Anne – Thank you. I am on Predisone and I have about a week left on it. It has helped a little but I think with the stress of trying to wrap my brain around the news has been hard as well. I’ve had good days and bad days. I am so thankful to have such a great group of people. It makes you not feel so alone. THANK YOU so much for that!:)
Jazmin – Thank you so much! You are right, what a blessing! I already feel a sigh of relief from the group. Thank you so much for the support.
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I hope you all have a beautiful, healthy and peaceful day!! I thank you a million times over for all the positive and informative information.
It will be one hell of a roller-coaster ride over the next few months. Read as much as you can & bookmark all sites you feel were well written so you can easily return to them. As you gain knowledge, you will of course be able to take in more information & more that is relevant to you & your Lupus. My very best & warmest good wishes to you. Kaz (18 months so far)
Hi Rose and welcome! Everyone has told you the best tips. Ann is a fount of info as well as many others. Tez aka Terri hasn't weighed in yet but she too has bunches of info. EVERYONE here has many things to share. I have learned something from everyone. Be kind to yourself and try to take just one day at a time. You will learn what your body needs and doesn't need. Each one of us is a little different so you will learn to be attuned to your own. Gentle hugs, Reet
Hello!! I’m my 4th month I. From being diagnosed but it took 3 years of being sick to get it!! I’ve been on plaquenil and have started to feel the effects now and it’s all looking positive lupus doesn’t have to be bad and the end of life you can still do whatever you want to do in life!! I want to become a counsellor and I’m going to be working from home to make things easier for me… I had a bit of trouble coming off prednisone so I’m back on it and feeling much better for it… The best thing to do is keep a positive mind and do your research as much as possible so you know how to handle the disease and your symptoms effectively and know when you need a doctor and when you don’t e.t.c… I’ve also joined more lupus groups to get more info but to be honest this is my fave good luck!!
Welcome! I have a form of skin lupus and have only known about 3 weeks or so. Educating yourself is very important. But right now just do a bit at a time and don't overwhelm yourself. Internet is good just watch where the info comes from, lots of weird stuff out there. The library is great too. But need to check copyright dates as libraries often aren't as up to date as we would like them to be. Finding this place has been a blessing. Make sure to include your husband in all this. You are in it together. :)
Good morning,dont feel discouraged i was diagnosed five years ago.Im now on prednisone,meloxicam,plaguenil,restasis etc…,when i firs found out all i did was cry,at work i dindt feel energized likebefore.Now that im on on this meds. it helps me get around and deal with my lupus.Just have faith.Big hugsss.
Welcome !! I was diagnosed 6 weeks ago and it is quite a ride!! I am on prednisone and plaquinel it has helped me a lot. I also have Addison desease just found out. Each week I feel a little stronger stay positive and have faith:) this support group is a wonderful place to learn and share.
Wishing you a wonderful day !
Welcome, Rose!
I have been going through serious and I chronic illness for over 25to years, was first diagnosed with SLE in 2002 finally. The one thing that has not changed over my lifetime is that things are constantly changin! So tighten your seat belt, it is going to be quite a ride. The way I like to put it is that if Life is a roller coaster ride and you have Lupus you the next week i can’t move off the couch and I am in tears. Try to go with your emotions and stay sharin here with us. Noone understands like others here that are going through the same things. And yes, stay educated. And open with the doctors. Be part of your health team and stick up for yourself.
Healing hugz, Maré,
Being told you have Lupus is a frightening thing. I've found Dr Daniel Wallace's the Lupus Book has been a great help in answering questions I had. You've joined a helpful support group. Follow your Dr's orders & you'll feel better in no time. Good Luck
