Hello, New here have Lupus

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Yvonne&Ulf
New Member


Date Joined Nov 2013
Total Posts : 1
   Posted 11/11/2013 11:32 PM (GMT -6)   
Hello, I did not see an introduction area, may have missed it. My name is Yvonne and my forum name is my Service dog Ulf. I have a couple conditions that made determining the Lupus come after years of trying to find help. I do hope to find a place to start processing here and leaning as well as some support. I have read so many contradictory ways it is treated that I wish to know from others in my position the skinny on what helps or does not. I get brain swelling that affects my balance, auditory, vision and daily function during flare ups that was thought to be part of a separate health issue until the right person figured out that was wrong. We hope it was caught in time that my left kidney was not damaged too much. I basically need to know what I am stepping in to because unfortunately I have been across some docs that took me down some paths that I should not have been on and I want to have as much knowledge as I can to be able to make my own decisions about my health with my doctor. I want to also know if Lupus can affect pancreatic function? I am also interested in exchanging notes on others who have SD partners and perhaps I can return your help in that capacity.

Twit
New Member


Date Joined Nov 2013
Total Posts : 4
   Posted 11/12/2013 7:46 AM (GMT -6)   
Hi Yvonne, nice to meet you.  My name is Trish and I am new to this site also.  I was diagnosed 3 years ago.  I am on my fourth rheum. and I am finally happy with how he is treating my lupus. Every day is different, you never know how you are going to feel.  I get flare ups but I don't know of any damage to my organs, yet.  Not to be gross but I woke up this morning and went to the bathroom and had blood in my stool.  Luckily I went to this website and read that it is very important that I contact my doctor.  Right now I am waiting for her office to open.
 
My lupus made it's entrance at a very stressful time and I think that is what brought it on.  My husband and I had his daughter and her five young children living with us.  It was a very trying time and I do believe that if they had not moved in I still wouldn't know I had lupus.
 
I am now taking Methotrexate weekly and it seems to be working. When I have a flare up I have to take steroids.  I really don't like them but they sure work well.
 
about a year after my sister was diagnosed with rheumatory arthritis I was diagnosed with lupus.  Hmm, isn't that weird?  We don't know of anyone in  our family that had either.
 
I also have bicuspid aortic valve which means I will probably have to have heart surgery at sometime in my life.  I am 54 and I'm guessing it's not far away.  I'm very nervous because I also have the clotting problem that goes hand in hand with lupus.  Do you also have that disorder?
 
I'm very fortunate to have a very understanding and loving husband.  It was hard for him to understand the whole disease but he ended up going to a few of my dr. appointments and it really helped him understand and he was able to ask questions about things that were on his mind.
 
Yvonne, do you have someone to help you through this?  I hope so, I would hate for you to be going through this by yourself.
 
GTG, have to call the doc.
 
Take care.

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 11/13/2013 6:06 PM (GMT -6)   
Hi Yvonne and Trish:

I want to welcome you both the lupus forum. I'm sorry to hear that you both have lupus, but you're in the right place for information and support. The folks here are very helpful and have a lot of knowledge. We all support each other and are always here to listen.

Lupus varies from person to person. In some it's very mild to the point where they do not need medication. Others are very severe and need a lot of medication and help. Lupus isn't a death sentence by any means. With medical advancements they have gotten a lot better at treating lupus.

Getting plenty of rest, eating healthy, exercising as much as you can, limiting stress, and following your Doctors orders are the best things for you. I've had lupus for 26 years now, I also have RA, Fibro, the clotting issues that come with lupus, and LGL Leukemia. My lupus is very severe, I've been on high dose steroids for almost 13 years. So, I have all the bad side effects from them, including my bones are so thin that I've fractured 7 of my ribs already this year alone.

I've taken every medication available to treat lupus and RA, except Gold injections. None of the medications have worked long term for me. The best drug for me is really high dose steroids, which I can not stay on long term. In the beginning I wasn't nearly as sick and my flares would come and go. Now days I feel as if I'm in a constant flare day in and day out.

If I can answer any questions for either of you please ask away. I may be a bit late answering, I'm into day 7 of radiation and I have to say I'm wiped out. I check the forum daily, but sometimes I just can't respond on that day, so bear with me. I do have multiple organ involvement Yvonne, so I understand what you're going through. Trish I'm on 35mg of injectable MTX weekly right now, so I too understand having to take this drug as well.

Again, welcome and I'm looking forward to getting to know you better and maybe offering so help in some way. Take care and let us know how you're doing.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Twit
New Member


Date Joined Nov 2013
Total Posts : 4
   Posted 11/14/2013 7:39 PM (GMT -6)   
Barbara,
 
Thanks you for responding so quickly.  My heart goes out to you!  I do have a couple questions and when you feel up to it you can respond, please don't hurry.  I was diagnosed at 51 and I am now 54.  From the time I was diagnosed until now I feel like it's been down hill.  I do however feel that the Methotrexate will help.  I would like to know how old you were when you were diagnosed and how quickly it became worse.  I am doing everything you said to stay healthy except for exercising and staying away from stress.  I work full time and have a large home to take care of.  Saturday's are my day to clean and I think I do a good job of doing a little bit and then relaxing.  Do you think this enough exercise?  During the week I come home from work, cook dinner, clean up and I am ready for bed.  I'm sure you have heard this before but I cannot find the strength nor the time to exercise.  I absolutely love golf but I had to quit half way through the summer because my left wrist has RA.  I helped someone at work put something in her car and since then I have pain in the right side by my clavicle.  It won't go away.  I guess I just want to know how you fit in exercise.  I was told Yoga is great but then I have always had a problem with my knee.  I don't know if it is my ACL, but something goes out of place and I have to push my leg up against a wall and straighten it so it goes pops into place.  I'm afraid if I do yoga that will happen.
 
Sorry for rambling on but I am so glad you responded and it feels great to talk to someone.
 
My friends are telling me how many Lupus commercials they are seeing on TV.  This is great because we all want everybody to be aware of this disease.  It's a start, right?
 
God bless you and stay in touch when you can.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 11/14/2013 8:04 PM (GMT -6)   
Well, exercise doesn't have to be a huge exertion! Do you walk or stand any at your work? Even adding a lap around the office - just enough to get your blood moving - can be exercise if it's more than you are doing now. Or walking to the end of the driveway or down the block a few houses.

I was diagnosed in 2002 and did feel like I went downhill a couple of years. But eventually we found the medications that worked for me and things started getting a whole lot better!

Usually a rheumy will start us on Plaquenil, it's an anti-malarial drug that helps slow the progression of Lupus. Then an anti-inflammatory - if the NSAIDs don't work then you may be put on prednisone. But then something is added to help things get better - common options are Imuran, Cellcept, MTX - different meds work for different people.

My Dr started me with Imuran, which did nothing for me - not good, not bad. Then we tried Cellcept, which turned out to be my miracle drug that gave me my brain back. (Went from post-PhD engineering research to not be able to follow a 30-minute sitcom!)

Hope to see you around!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 11/14/2013 8:28 PM (GMT -6)   
Hi Trish:

Thanks for you well wishes to me. Lets see if I can answer your ?'s. First, it sounds like you're taking on actually to much and not listening to your body. Lupus is a hard disease to control at times and we have to be VERY attune to our bodies.

It sounds like you should tired working full time, cleaning a large home and preparing meals. For me I'm very limited in how much I do around my home. My hubby of almost 29 years does the bulk of it normally. I'm a clean freak LOL and when he doesn't do it the way I like it, I go over it again. He does all the cooking here in our home as I never know from day to day if I'll be able to do it.

My exercise comes from doing pulmonary rehab 2 times a weeks. I also do stretching for my muscles that are very tight, and I do Physical therapy 2 times a weeks. I do exercises to help with my chronic Achilles tendonitis and my low back pain. I also try to get a massage every 14 days and my massage therapist also helps stretch my muscles. Since I have Fibro in addition to the RA and Lupus, my muscles burn and ache 24/7.

When having a bad day and feeling very unwell, I make sure all I do is rest. I do not attempt to exercise, clean, go out anywhere, or do anything but sleep. If we ignore our bodies when it's telling us we need rest, we only make our flares worse. I would suggest that maybe you make yourself a toned down schedule for cleaning of your home. Try to make meals that are easily frozen and can be reheated. Or use a crock pot for meals. The stress that you're dealing with also needs to be lessened if at all possible.

These types of things set us off in a flare. You need be very careful not to take on to much and if you're not good at saying NO, you need to learn to be able to say it. Overall, you might want to consider cutting back at your job for a bit and see if that helps some.

I was 22 when I started showing signs of lupus. I was 35 when the officially said I have it. I truly believe letting me go 13 years w/o treatment is partially why I'm so ill. That said, I guess I really started going down hill after I had 3/4 of my colon removed in 2005. I was 40 at that time, I'm now 48 and am beyond sick. Of course, I've got the two AI diseases, the Fibro, and the LGL Leukemia. I've also had issues with major blood clots twice now, and am on blood thinners for the rest of my life.

I've also been accepted into a research study at NIH (National Institutes of Health) in the Infectious Disease Clinic. I've been suffering with severe problems with warts. My thumbs are deformed from them, I can't fight off the virus as I have NO immune system at all. I'm currently undergoing radiation therapy to attempt to kill the warts.

The Dr's believe that even though I've been on immune suppressing medications since 2002, I have an underlying Immune Deficiency Disorder of some type. I have no B cells at all and my T cell count is only 5. My T cell count is lower than the average AIDS patients. The Dr's have no idea why, so I pick up every virus, infection etc. With this going on I was told that I must be very careful about infections, one literally could kill me in a heartbeat.

I nearly lost my life in June 2011 from pneumonia in both lungs, ended up on life support for 5 days. They weren't sure I would pull thru, of course, hubby told them I was a "Tough old bird and I'd be fine" and of course he was right.

Now I'm not a Dr or a medical professional so I'm only offering my opinion. However, you're early on in your disease and I'm not quite sure that your worsening per say. I think maybe that you've just not been stabilized yet. For many once the disease process is controlled they do very well. We have several members here who are now medication free and have been for some time. Then we have others who are in the middle of the road, and some who seem to flare all the time. Lupus is a toss up, no two patients are the same. So it's really hard to predict how one will do vs. the other patients.

I'd suggest you try not to worry to much about worsening. It's a good sign that you have no organ involvement as of now. I would continue on with your treatment and give the MTX more time to work. Keep a journal of your symptoms and when you're uncertain if it's Lupus related call your Rheumy or ask here. I think you'll do just fine and you have to think positive and listen to your body, it will let you know what you're NOT doing right.

If I can help in anyway let me know. Take care and be well.

Hugs,
Barbara

PS.... Did your Dr get back to you and did they figure out why the blood in the stool?
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.
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