View Full Version : My first message here
05-17-2009, 04:54 PM
I'm glad to have found this site. It seems to be just what I've been searching for these past several weeks after hearing the "official" word about my lupus diagnosis. I've secretly wondered for months if this would be the final outcome. My symptoms have been getting progressively more difficult to manage for the past year. It all started with a stroke last June that baffled all the physicians I've seen. My health was basically fine. I'd quit smoking 5 years prior and was exercising regularly, managing my weight, etc. I had a little high cholesterol and some mild back pain and some fatigue. I thought it was all a part of the aging process. I recently had to take 2 months short-term disability from my job as an educator. My fatigue and pain were out of control. Now, I'm being treated for sleep apnea, B12 anemia, high cholesterol, depression, and lupus. I'm taking alot of medication and that's been the hardest part for me. The methotrexate (2.5 mg, 4 pills once per week) is not a huge does, but I have some pretty bad side effects. I sleep nearly an entire day after taking it, hair is falling out, no appetite, etc. Can't say at this point that it makes enough of a positive difference to keep taking it......I'd love to hear from others who have taken this drug and to hear if anyone else had similar side effects. I look forward to making new connections here with others like me.
I'm Rob, and I was diagnosed with Systemic Lupus five years ago. I don't have any experience with methotrexate, but we have some regular members here who do. Our member who has the username "iseedeadmonkeys" has alot of experience with it, and has a fairly active thread/topic called "It's m day" meaning it's methotrexate dose day. You can use one of the search features here with her username to find her posts. I'm sure some of our other members will be along before too long to share their experience. Anyway, welcome to our group, and please make yourself at home here.
05-17-2009, 06:42 PM
i want to welcome you to the place where you can find answers to your questions, and these answers come from our many compassionate and knowledgeable members. Every person here has been where you are, and we all understand the fear and frustration that you are experiencing. Hopefully, we can help you walk through each step, we can encourage you to stand strong (even when the disease has you beat down), and we can educate you on how to live your life with lupus. I am so sorry that you are going through all of these fears, but I am also so very happy that you found us.
I also take methotrexate (mtx), but i give myself a weekly injection. I have never taken the pills, but it is my understanding that the injection bypasses some of the severe stomach issues. I take my shot on Monday night (hence the thread "its m day"), and i feel like crap on tuesday. My dr. prescribed a "rescue drug" called Lucavorian (spelling?), which i take on tuesday morning and after lunch on tuesday. It helps with stomach cramps, and helps me sleep through the yukky feelings. usually, by tuesday evening i start to feel better and by wednesday, i feel good and so far, i continue to do ok through the rest of the week.
I also take folic acid each day to help with hair loss and mouth sores, etc. I also take a weekly shot of B12 for deficiency.
I am relatively new to the treatment program, although i have suffered with lupus for years, but just got a diagnosis last october. I remember being so scared, but i can tell you that you will get a hold of what is happening to you, and you will learn how to reduce the symptoms. This is why we are here, we all help each other face the fears that we each face on occassion.....this is the nature of this beastly disease.
sorry for the disseration, please know we are happy to have you here, and I look forward to sharing with you.
05-19-2009, 07:46 PM
Wanting to welcome you here...hugs..
I haven't used MTX...but I do like to chat, listen. LOL..sounds like a personal ad.
Oodles of people to connect with here...several from Florida too. me I am just two states up. S.C.
Again welcome here.
05-19-2009, 09:35 PM
Hello Leann :wavey:
Welcome! I'm Lori...Happy to meet you...sorry you've been told you have Lupus.
I don't have experience with Methotrexate, but like Oluwa...I do have experience with listening....supporting. You've already heard from our member, Phyllis, about her experience with taking MTX and I know there will be others to come along soon and share as well.
I've been through the part where you have your very own pharmacy in your home medicine cabinet....I understand the overwhelming feelings of frustration from this. For me the hard part of that, was facing each day knowing that I was dependent on taking all those pills just to make it through that day and not end up in a hospital. I hated the feelings of loss of control over my own body...my life. I hated the fact that I had to take all those pills and oftentimes, still feel like crap at the end of the day.
I do have some hope to offer though...I've been in a remission now for about 15 years, and I only take 5 very small pills a day. That seems like nothing when compared with the 33 that I used to take when I was first diagnosed.
I hope you'll stick around and get to know us...we'd love to get to know you....and hopefully we can all provide each other some support and encouragement along the way.
05-19-2009, 11:59 PM
Welcome! I also have no experience with that particular drug, but we do have some knowledgable members that take it. I hope you feel like you can talk anytime you want to, and I hope you know that people here really do care! Always a friend ~ Angie
05-20-2009, 07:06 AM
welcome to the site...
05-20-2009, 10:03 AM
Welcome to the site and I must say you have found a home. A home for all your questions/concerns/moods/etc. The people on this site never judge and always chime in. They are helpful and you will find will become your cyber family and friends who do actually know how you feel and what you are going through which for me was/is the most comforting.
I too am on methotrexate 20mg (8pills a week on sundays) I do not or have not experienced any side effects as I know many have. I take it on a full stomach and no other meds when I do take it with lots of water as both my doctor and pharmacist stated to do. Sorry you are having a hard time with the drugs but I do wish you health and remission as I know they are both coming for us all...Claim it!
05-20-2009, 06:58 PM
I am Saysusie, moderator/administrator of this wonderful cyber family. You've already met and been welcomed by some of our members and I just wanted to add my welcome to the mix.
I, personally, have not taken Methotrexate. But, my daughter did and she pretty much had the same effects as you do. She took her dose once per week and that day came to be known as her "Methotrexate Day". Like you, she spent that day in bed due to the effects of the drug. However, on the days following her dose, she did fare much better as a result of the Methotrexate.
Rob mentioned our other members who take Methotrexate and the thread about the drug. Hopefully, reading that will give you some insight into how you can deal with the drug!
Welcome to our family, I am so glad that you are here and that you decided to join us:cute:
Peace and Blessings
05-20-2009, 08:25 PM
I'm new here too, but I had to write to you, because I have been out of work as an educato since the beginning of March when my doctor thought I had a stroke. I wasn't seeing much improvement with PT so I decided to got to a neurologist. After a ton of blood tests and a thorough neurological test, he said he believes its lupus, but has referred me to a rhuematologist. He is also sending out a nurse to do IV steroids. I hope they help! I really sypathize with you and hope you the best.
05-23-2009, 07:56 AM
All of these words are so encouraging to me!! Today was my "meth" day and I just swallowed the poison.
I was able to work at school for 5 days in a row this week and that was a victory. I'm a school counselor.......and now I need counseling!! oh the irony~
I welcome anyone to email me who needs a lupus support buddy. I'm a good listener and a supportive friend.
05-23-2009, 08:47 AM
Welcome to the site. Hope you will find support and friendship here.
05-23-2009, 05:11 PM
Just to say hello and welcome to you.
sending you gentle hugs