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I have been reading the posts on this site for a very long time, I just have not decided to post until now....in other words I was lurking :)

I am Angel...I have been diagnosed with SLE since October of 2006. I have been sick with Fibromyalgia since 1996 when I was 23, but in discovering that diagnosis, my Rheumatologist just kept finding odd things in my blood work...all "borderline" numbers (I hate the word borderline lol :)), as well as many, many symptoms that were like tiny puzzle pieces that no one could ever put together.

Anyway, without going too far into my 12 year journey of over 100 doctors and specialists, no insurance for 4 years, SOMEONE finally figured out that I definitely had SLE.

I have been to some of the best hospitals here in Alabama (like The University of Alabama at Birmingham) and I finally found three doctors that all figured it out at the same time! 8)

Since 2006, I have been in the hospital six times for various things all related to SLE (or so I am told). I had been put on Prednisone 80mg per day for almost 2 1/2 years. Boy did that stuff mess me up! It helped with inflammation, but it also caused a very bad vitamin D deficency, osteopenia, and I had to have double cataract surgery @ 34 because of the long term use of high doses of steroids. So I weaned myself off of it with my new Rheumy's help. He immediately put my on Plaquenil. I have been off of Pred and on Plaquenil for about 6 months and I just get in these flares (most all end with a hospital stay) that WILL NOT GO AWAY! I am in one of those now :mad:

Anyway, my medication list and list of conditions has just kept growing all this time....I had to quit college 3 quarters away from my bachelors degree, I had to quit my job also....all of the severe flares, doctor and hospital stays equal absences....I am now in the process of applying for disability. I have recently started having seizures and a bunch of strange neuro issues (all on my left side) that we are still in the process of figuring out. So now, I can no longer drive....arrggggg!!!!

I apologize for how long this is, but this is the foundation of what has been going on with me and the reason I am here....I really have felt isolated even though I am with my boys (five and eight) every day and I have a wonderful husband who is really trying to understand all that is going on with me....

I am so glad to have the chance to belong to a community of wonderful people who understand the many challenges of this disease...thank you for having read through this;)....you have a very good attention span hehehe :)

Looking forward to getting to know you all :)

 

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Hi Angel,
Welcome to the site, it really is a great place for top rtae info and support.

I am reallly sorry that you are ahving such a rough time but it is really good that you have found this site, there are some really nice people on here with a great deal of experience of all these complicated issues.

I really hope it helps you feel less isolated coming here.
You can also talk directly to people in the chat room. Peolpe are alsways welcoming!

I hope things do start to get better for you soon.

Take Care

Cassie :)
 

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I understand lurking...

Hello Angel, I have only just joined this forum (this week) and am learning things every day. I was tempted to 'lurk' and had it not been for my husbands nagging I probably wouldn't have joined yet!!

It sounds as if you have had an incredibly long and difficult journey but that you are navigating it with courage and strength, what a brilliant role model for those children of yours.

Take care of yourself, hopefully the plaquenil will lessen your symptoms, though it can take quite a while to 'kick in'. I have been on it for only 2 and half months and not benefitting yet. A very knowledgeable Caribbean doctor told me it takes often 6 months and beyond... so hang in there and let me know how you get on.

Be kind to yourself

Claire x
 

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Hi Angel and welcome:)
Am I right in thinking you were consistantly on 80mg of prednisone for over two years......OMG:eek:
Most poeple here are managed by bursts of high doses of steroids though some require maintenance doses of much less than that.
Commonly immunosuppressants are used to enable less pred usage.

Your new rheumy sounds like a keeper.You did fantastically to get off the steroids after that time.......I'm winding down myself currently on 5mg of prednisalone, and it can be hard.

I'm sorry to here how much lupus has disrupted your life. It's really hard to come to terms with I know and the neuro symptoms can be so scary.
You are bound to come across somebody else on the boards with similar experiences so stay in touch.

Very best wishes
 

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Hi Angel

Welcome to the Forum :) Im sorry to hear you have had such a difficult time with your Lupus. Those flares sound really awful and obviously very severe to make you end up in hospital most of the time :worried:

I hope they figure out the seizure activity soon for you. Thats such a shame that you cant drive. I would be lost without my car.

That is an enormous dose of steroids for such a long period :eek: I have been on low dose steroids since 2005 and have also developed osteopenia. I couldnt imagine the effect of that dose on a daily basis :hugbetter:

The very best of luck with the neuro investigations. It's hard to be so ill and try and look after little ones at the same time. Its great that you have such a wonderful husband :)

Nice to meet you Angel and I look forward to getting to know you better. Keep us updated on your neuro progress.

Take care for now
Joan:rose:
 

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Hi Angel,

Sorry to hear it took so long for you to get here. I just got here myself & I'm glad I did. I've been reading some of the postings & I've got to tell you...I don't feel like the Lone Ranger anymore! Reading through some of these things has already helped me understand this a bit more. I've been through almost 5 years of horrendous pain complicated by people (including doctors AND myself) thinking I was a hypochondriac!! If I'm reading all this stuff right, now that the pain is gone, it's just a matter of time to get my mind & bod straightened around. My doc tells me I may have to be on a low dose of pred for the rest of my life. I'm not crazy about the idea, but everytime I try to get off the 5ml of pred, I'm slammed back into another flare within a day or 2. Right now, I'm concentrating on getting my head back together. I've been in such pain for so long that, now that there's physical relief, I'm beginning to realize that it's messed me up pretty good upstairs. Try not to let the physical flares get you down! I think, if I've got this right, that our mental state of mind is just as important in minimizing flare-ups as our physical state is. It sounds like you're going through a lot right now and this is a great place to "dump" if you need to. I write a lot, too. But it seems to help to get some of this stuff out!
I'm not going to say "Good Luck" because we're all lucky to be alive & have the ability to communicate to eachother!! I will say, I HOPE YOU HAVE A GREAT DAY JUST FOR TODAY!
"See" You Soon...
Sue
 

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Hello Angel,
I am glad you introduced yourself.
Now that you have found some good Docs. they may well introduce other treatments. That was a horrendous dose of steroids, and I am frankly surprised and curious as to why you were not prescribed immunosuppressants to help you manage on much safer doses of steroids. You have done wonderfully well to get off them!
You may well find your symptoms stabilise in time, so you may be able to pick up some of your plans again.
x Lola
 

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Hi Angel,
Welcome to the site. I am glad that you finally posted and hope to see you in the chat room soon. I am sorry you have had so much trouble with finding good help for you disease management better.
 

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Discussion Starter #9
Thank ALL of you!

You all are so wonderful that even through your own pain and problems you have reached out to me:)

I just had an appt yesterday with my rheumy and he decided to give me a cortosone shot in both of my shoulders and I didn't even go because of them! :hehe:

He thoroughly examined me and pronounced that the blood tests from my last appt (not my last 2 hospital stay's after that) showed that my SLE wasn't "particularly active" right now! :mad: I wish someone would tell my body that!

I did go to the vampire section of the hospital and get about 8 vials of blood taken b/c he now thinks I have MCTD with SLE being my primary problem. He said that my muscle tone, "floppy knees", and tendonitis with rotator cuff "injury" (I haven't done anything to injure my arms) is due to something we haven't "quite put our finger on"....arrrggg. He said the muscle stuff may be something called polymyositis (sp) ....never heard of it until now....now I am freaked when I read about the MCTD....it sounds so much more serious than "just SLE".

As you may be able to tell my posts tend to be long so I apologize!

I did want to address the 80mg of Pred a day....yes....for 2 1/2 years. I have already been told the quality of care I got at a Dr. I was seeing when I had no insurance was negligent. REALLY NOW? :hehe:

Again thank you all! And your attention spans!
 

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Hi Angel,
Welcome to the board. You will find people here with a HUGE amount of knowledge. The moderators are superb....a lot of wisdom in them.

I can relate to a lot of what you have gone thru. I was maintained on 80 mgs pred, not as long as you, and did an inpatient pulsing with major complications. So, you have gone thru a LOT with all this. I admire you for dealing with the "shake and bake" of withdrawal. It took me nearly a year to get my pred down to the 1 and 3 mgs alternating days.

I'm glad you are here, and hope we are able to add to your life in good ways.
Sally
 

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Sally,

Thank you very much for your kind words:)

I just decided right after the cataract surgery @35, I had enough of Pred. I had tried to go down on the dose several times, but always ended up back on 80mg. As soon as I started on Plaquenil 400mg, I got off the pred within 2 months....Although the pred actually helped more than the Plaquenil, the side effects were just making me even more sick!

I am very glad I have (by reputation) one of the most knowledgeable and qualified Rheumys in the state, if not the country. He has authored more than one research paper :) He has almost zero bedside manner, but I think his knowledge more than makes up for it. I couldn't believe it when I actually made him laugh the other day! :lol:

Anyway, thank you again...I hope your doing well. :)
 
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