View Full Version : Hi, just wanted to introduce myself
05-13-2008, 05:15 PM
I first came to this site about a month ago and I introduced myself, but have had trouble getting back in til now. I thought I would reintroduce myself.
I was diagnosed with SLE in 1998. I think I have had it longer than that but the doctors did not know what was wrong with me. I was put on Plaquinal, an NSAID, and prednisone for about a year. Then I went into remission. I went off all meds for a year or two then started having joint pain in my hands so the rheumatologist put me back on Plaquinal and the NSAID. I have been doing pretty good, however my ANA is always positive on my quarterly appointments to the rheumatologist. But about a month ago I had a flare. I think it was stress related. I all of a sudden remembered how bad full blown lupus can feel. I got in to see the rheumatologist and got a cortisone shot as well as a prednisone taper. They did the normal blood work and I am very vitamin D deficient. So I have to take a prescription strength dose of Vitamin D weekly. I go back to the doctor on the 21st to see if she is going to put me on prednisone for longer. I am really fighting that. I also am anorexic and the thought of the weight gain from the prednisone only adds more stress.
I was just wondering how common a vitamin D deficiency is with a lupus flare?
I look forward to getting to know everyone here.
I am a 47 year old female living in southwestern Ohio. I have two grown kids so it is me and my husband and four horses.
05-13-2008, 08:41 PM
Marcia, welcome to the family. I'm sorry to hear of your flare. Unfortunately with this disease one never knows what is going to happen. I certainly understand what you mean about the weight gain associated with the pred, but please be strong and try to stay focused on getting better. Take care!
05-14-2008, 05:42 AM
Welcome to this lovely friendly site! The wonderful thing about it is that one gets good advice from some and good friendship from some as well as a good dose of support from all! Its lovely to have you with us!
Unfortunately I am fairly newly diagnosed (Feb '08) so I'm on a huge learning curve myself so I'm definately one of those who can't give too much advice. I've just turned 48, so we're of a similar age. It seems to me that its a 'popular' age for having lupus manifest itself clearly. I, like you, have also had lots of lupus symptoms for a good few years and i had no idea what lupus was. Then came the flare with a high temp and a stiff sore almost immovable body!
Well, I can move again, with some joint pain but I'm ok.
I'm from South Africa so I find I'm always online while America is sleeping.
Good to meet you Marcia!
05-14-2008, 10:18 AM
I'm a newbie here also. Just wanted to welcome you back to this site.
I've had my ongoing battle with Lupus for 26 years now. I'm quite close to your age, married, with 2 kids, a daughter 12, and a son that will be 16 this summer.
I was diagnosed with Lupus at age 18, right out of High School. I had a very severe case from the start and had to go on high doses of Prednisone right away. Eventually my doctor put me on Imuran combined with the Prednisone, cuz he was having success getting patients tapered off the Prednisone easier with the Imuran in their system. That worked really well for me for quite a few years. I know no one wants to be on the Prednisone cuz of the nasty side effects, but sometimes it is the best course of treatment to get things in control with flares.
You mentioned you're anorexic, does this mean you are at your normal weight now, or very underweight? I have always been very small....5'2 and barely a hundred pounds, so rather than gain weight with the Prednisone, I've had the opposite effect, a hard time gaining weight and keeping in on. I know I'm in the minority, here, with that one. When you were on the Prednisone in the past, did you have a lot of weight gain? Does the Prednisone increase your appetite? It had the opposite effect on me, making me feel no hunger at all. I would have to force myself to eat. I never got any normal signs of hunger. Are you able to do any exercise, like taking walks or swimming? Swimming was the only exercise I was able to do for years because of my joints. Just curious, do you ride your horses? I think it would be wonderful to own horses and have a place to ride.
One thing I have learned thru my years with Lupus and all the many flares, is that one of the best things you can do to avoid flares (or get thru them quicker sometimes) is to reduce the stress in your life as much as you possibly can!! And I know that's easier said than done, and there are always stresses that are inherent in our daily lives, but if you try to recognize things that are causing you intense stress (for me it was people that were not supportive of my illness and were always negative thinkers) and reduce or remove those things from your life. The more I kept stressing and worrying, the sicker I got. When I made some readjustments to my life and daily routine, even just little things, I began to have fewer flares. So bit by bit, I figured out what was good for me and my body and went in that direction. Do you have to work outside the home? Through the blessing of Social Security Disability, I have arranged my life so that I can be a stay-at-home Mom. This arrangement has been the best thing that could have happened to me. I now have a much more relaxed lifestyle, set my own hours, (with the exception of my 24/7 job with the kids), and get to be there when my kids get home from school. I love it!! :D
As far as the Vitamin D deficiency, I don't think it is associated with a flare. Thru the course of my Lupus, I would be deficient in different vitamins or minerals at different times. Even though I ate a balanced diet and took a prescription multivitamin and extra Calcium and Vitamin D, there were times when I would be low on certain vitamins. My doc felt this was because of the stress this disease puts on your system and, at times, the inefficient way my body was functioning, as well as the Prednisone. And with Lupus, because of our decreased amount of contact with the sun, we are even more at risk of being deficient in Vitamin D.
I hope this information is helpful. I'm very sorry you've had a bad flare and I hope you and your doctor can get things in control quickly. You should share your concerns with your doctor about the weight gain while on Prednisone. Make him/her aware that if you do have to take more, that as soon as things are more stable with your Lupus, you want to taper off.
Good luck and I hope you are feeling better soon!! :lol:
05-14-2008, 11:55 AM
Vitamin D deficiancy is very common with lupus,,, the only true natural source of vit D is sunshine, yes it comes in some fruits and veggies but mostly it is provided by sunshine, since lupuies have a problem with sunshine thus a vit D deficiancy, this can also cause joint aches and pains
05-14-2008, 12:40 PM
I just wanted to welcome you to our family. You've already been given excellent advice and an answer to your question regarding vitamin D and Lupus. As you can see, our members are very willing to share, provide information and make sure that you know that you are not alone.
Peace and Blessings
05-14-2008, 02:23 PM
Hi ya Marcia and welcome
When my joints first started to swell and hurt my doctor slammed me on the Vit D and told me to never stop taking it.
We've played with different medications till we found arthrotec 75 which cuts the pain way back but causes swelling in the legs and feet....go figure!
I've also been taking plaquenil since December, but it's not doing a blessed thing.
Sorry you are flaring back up again...we're here for you :) just take it one step at a time.
My sister has been in remission for many years and is showing signs of coming out of remission.
That reminds me I'll have to call her tomorrow to see if she got her results yet. They should be in.
I'm not fully diagnosed yet, my sister is and my mother had lupus as well.
Hang in there, and let us know how you are doing.
05-15-2008, 12:25 PM
Thank you all for the welcome,
It is nice to be with others that understand things like "brain fog" and just what it is like to live with lupus as well as the medications that are needed to keep it at bay. I guess I am sorry that anyone has to have lupus, but it is nice to know that there is a place to share struggles and triumphs.
Thanks for all the information. I appreciate it. As for the question regarding my weight, for me I am at a okay weight, I am a little under what my doctor would like me to be, but I am no where near any sort of inpatient weight (been there, done that, don't want to do it again). I know that both lupus and anorexia are serious conditions and it may seem trivial to some that I would be so worried about weight gain with the prednisone when I am hurting so badly with the lupus. But it is a beast I cannot simply turn off. I can manage my weight and I know that I am less likely to flare if I am at a higher weight so I give myself a little wiggle room.
I go back on Wednesday and see my rheumatologist. I will see what she has to say about my vitamin D count. I am sure she will draw more blood to see if the count is up from last month. I think that the cortisone shot, the prednisone taper and the vitamin D prescription have all helped. I do feel much better than I did two weeks ago, so maybe the flare was short lived and I can once again enjoy being in remission.
Thanks again for the warm welcome.
05-15-2008, 02:37 PM
Just to let you know, I understand, completely, about the weight issue. I was a professional model for most of my life (from age 15-36). Inherent in that business is several serious eating disorders. My personal preference, at the time, was bulimia and laxatives and hours and hours and hours of aerobics! My "body buddies" (as we called ourselves at the time) did not binge and purge...we just purged every single thing that went in; be it an apple, two potato chips, coca cola - just everything. It's a wonder we didn't die from malnutrition or starvation. Ah, but we were thin and we looked good to the camera! What fools we were!
Anyway, like you, my doctors are still, to this day, always concerned about my weight. I have just, in my 50's, gotten to a weight that they are satisfied with and if I lose 1-2 pounds, I am questioned like a criminal. I am 5'10" tall at (finally) 150 pounds. This is still rather slim for my height, but it takes a lot of effort for me to keep that 150 pounds! I still have a healthy fear of food (more like and unhealthy fear of food) and I think that is part of our eating disorder that never goes away, does it?
Wow, aside from my therapist, I have never admitted that part of me to anyone else. I just wanted you to know that someone here truly understands that part of your struggle also! So, you are not alone!
We are here for you, whenever you need us and, as you can see, there is always someone who is understanding and caring!
Peace and Blessings
05-15-2008, 04:53 PM
Thank you so much for opening up to me. What you had to say regarding weight and eating disorders helps a lot. I am 5'9' and my last weight was 119. I had a therapist last year that wanted me up to 150. I am so glad you have been able to get up to a goal weight. I know in the long run with the lupus is really is the best thing. Being at a low weight makes it so hard to fight infection and there are very little fat reserves to draw off of. I just have a hard time applying that to myself. I can so easily tell someone else those facts, but when I look myself in the mirror I see where I need to tone or lose. In the process I am setting myself up for a huge downfall.
I do appreciate your openness. It helps to know that you understand.
05-16-2008, 09:13 AM
Yes, 119 at 5'9" is quite thin. When I was modeling, I fluctuated between 115 and 120 at 5'10". I remained at that weight until I hit my 40's..fortunately, my metabolism slowed down and I was able to put on weight and keep it on. I really don't like myself at 150 (if it were up to me, I'd be down to 130 at least). You and I both suffer from poor body image, meaning, when we look at ourselves, all that we see are the areas of fat that we need to get rid of. Everyone around us tells us that we look fine, but we see problems that we hate. However, after enough hospitalizations, I've realized - as you said- that in order to maintain some reasonable health, I have to keep the weight on. It is hard to do because, as I mentioned before, my eating habits are still deplorable :lol: Still, to this day, when I eat what I think is too much, I think about purging. I don't do it, haven't done it in over 20 yrs..but I think about it.
Keep at it, you and I can help one another in this particular struggle because it is one that never really ends! I wish you the very best.
Peace and Blessings
sick n tired
05-17-2008, 06:52 AM
Welcome to the family...I know that I am late to be posting on this one, but better late than never. :)
I look forward to getting to know you better.
05-17-2008, 10:40 AM
This forum is very informative and I hope you stay and share. There is a lot of information here and we can bounce problems and ideas off of each other.
05-17-2008, 02:32 PM
Hi, Marcia. Glad you found your way back to us! Welcome to the group - you'll find a lot of support here (as you can already see!)
05-19-2008, 12:29 AM
Welcome!! Glad you found us.
05-20-2008, 01:39 PM
Welcome, we look forward to getting to know you too, Marcia
I have read also, like Teriod, with IT(Lupus), no sunshine...no Vitamin D. I would also add being an anorexic probably has doubled the risk of ending up deficient due to your diet. I've retaught myself to associate the word diet, not meaning without food, not being restricted but to associate the word with healthy nutritious food. Do you include any amount of fish, eggs, fortified milk, and cod liver oil in your diet...? Excellent sources of the D...
I am a self recovered anorexic/bulimic...literally spend half my life in the cycle. I am 47 like you. I know hunger. I know discipline. I know control which really is, in an ED world... is out of control.
I was like you. Anything that would cause a weight gain I would not prescribe to it. The prednisone will probably cause weight, the gain will probably cause you stress and an increase in depression. Then it becomes a big vicious circle to control. Like controlling hundreds of plates spinning on poles...
You will have to find a way through it and not around it, which is temporary.
There are no magic words, no ah ha moment to change our thoughts regarding ED as you know. We know the answer, we have the tools, we just have to use them. Stress feeds anorexia and it also feeds IT...
It's hard. I understand. I know.
Keep looking for your wellness. In a book, in a conversation, in your thoughts, in this forum. This forum is a great find...
05-20-2008, 04:09 PM
Thank you so much for your response, particularly your insights on lupus and anorexia. The foods you mentioned that are sources of Vitamin D I am lack in eating. So that is probably where I have gotten myself into trouble. I have a phobia with dairy so that really hits me hard. Since you have come through anorexia you know the struggle of trying to just do the next right thing. I constantly think I am not doing any harm, but the test prove otherwise. I have had times when my weight is not an issue, I have never been "overweight" but I have been at goal or even at the upper end of my ideal weight range and been fine with it. However, when I get into times of stress or I feel that I am out of control the anorexia goes nuts. I know at age 47 and post menopausal due to a hysterectomy 9 years ago I should expect to be carrying a little extra weight. I KNOW all of this, but somehow I BELIEVE it does not apply to me. I do see a dietitian and a counselor, but I have got to find the answer from within.
Thanks for being so supportive. I have felt very welcome and am very glad I have found this forum.
I see my rheumatologist tomorrow, I will be interested to see what she has to say.
05-20-2008, 05:25 PM
So sorry to jump in late to the conversation, but I wanted to say hi, too!
It never fails to amaze me the wonderful and brave people we have here on this site, all trying to do their best for their bodies and their lives. I see you are another one of them, Marcia, and I think you will find lots of company here!
05-21-2008, 08:00 AM
We, you and I know it isn't about food. It will click for you.
To end an ED it takes a lot of self nagging and who likes to be nagged, eh? Changing our self concept, digging into our minds, the perseverance and making small changes which lead to big changes to overcome an ED. Very hard...a lot of stumbling, back to the old ways..sometimes the old way is easier, eh?
I hope your Rheuma had good things to say today, let us know.
05-21-2008, 04:28 PM
I got back from the rheumatologist a little while ago. She told me that the swelling was down. I told her I am feeling much better. She did suggest that I go on another med, methotrexate, but said I would have to come in for monthly labs if I took it, so she gave me the option to start that or just wait and see how I continue to do. I told her that I would just wait and see what happens. I have an appointment scheduled for 3 months from today, but if I am having any problems I am to call and get in to see her. I had also lost 4.5 pounds in the three weeks since I saw her last. I have got to get this weight under control. I am headed for disaster if I don't. But it is not about the food. I have got to get to the root of what is driving the anorexia. I have a good therapist but I am one of his first anorexic clients so he has learned from me, not that there is anything wrong with that, but sometimes I feel like a guinea pig.
I just want to thank you all so much for your support and your welcomes. I am looking forward to offering my encouragement or a listening ear.
05-21-2008, 05:00 PM
I'm glad that you're feeling better. I think you were wise to give yourself some time and see how you do. You may not need methotrexate just yet, and if you find you're doing so well you can always go on it later.
I don't know much about anorexia, but there's enough folks here who do. I hope your therapist is able to give you the support and guidance you need.
06-03-2008, 09:38 PM
Wondering how goes life..thinking about you...
06-30-2008, 05:35 AM
Still looking for you....
How is your weight...stabilizing yet?
It has been a month, how did your monthly test come out?
Do you want to take more about ED's with me on the side. How I battle it. I can share my insight, my blog, my journal with you? With IT, (lupus) and an ED we are alike in that way...
I am here for you..