View Full Version : New to this forum

03-21-2004, 05:18 PM

I have LSE Lupus. I've been sick off and on since I was ten yrs old... I'm now 32.

It took this long to finally get diagnosed. I have found that most doctors aren't very educated on diagnosing lupus.
I went most of my childhood and early adult life being mistaken for hypocondria by my family and the doctors knowing it was not that... but since they didn't know what it really was... they would just treat each new symptom as it arrived. And finally they quit running tests to see what was making me sick.

I've had everything from swelling in the joints arthritis, skin rashes, pnemonia, paracarditis, to waking up with collapsed lungs from inflammation, you name it.... I've had it. It's been incredibly frustrating.

I think when most people find out they have an illness they are probably stunned at first... and may even get depressed. I on the other hand was so sick of being sick and not knowing why... that I was (Not Happy) but releived that what was wrong with me actually had a name!

Now when I go to the doctor I don't get the 'deer in the head light look" anymore when they see my medical history. Instead they seem to listen to me now when I tell them soemthing is going on with my body. (not all doctors but the ones who are familiar with SLE).

I'm a very possitive person (always looking on the bright side)... and this is the first time that I've reached out for support. I'm the kind of person that thinks I have to accomplish it all... all by myself.

However, for the first time... I'm feeling a need to have some kind of support system... I've recently moved across the country from Chicago to sunny Santa Barbara County Ca.

I've moved away from all my family and friends because the job market was better here and I am a single mom with three daughters.

I get up at 4 - 4:30 am... Go to work come home at 3:30pm.. help kids with home work for about two hours.. while I'm trying to clean and cook dinner... then there's the dinner mess, laundry, all of the things I'm sure you are aware of with having kids.

I'm doing this through a pretty relentless flare up right now.

I'm lucky if I have 1 out of 10 days that I'm not sick, fatigued in pain. Lately it's been kidneys, uti's, very fatigued, raynauds syndrom, etc... With that... I still get up and do what I have to do every day ... with out fail. In today's economy, I have no choice but to keep going... and with the demands on the schools right now.. well, that means more demands for the parents as well when the kids get home from school.

Since I'm new to the area, I'm lacking in the "support system' area... you know the one.. the one that tells you "it will get better, hang in there"!

Always, I've been the strong one of my family... the one who holds everything together, never giving up and never breaking down, (not even when I'm sick).

Now it's different for some reason, I feel like I need to fall down and break apart for a little while... I haven't yet ( at least not completely)... but I feel it coming.

Im probably "babbling" through typing right now and if so I'm sorry for that... I think what I probably need most in my life is a really good house keeper or nanny to help take some of the stress off... I feel like I'm going non-stop all of the time. But hey, let's be realistic here... what single mom can afford a nanny? I make more than most single mom's but not enough for the real luxurious life style.

K... I'm done babbling.... Any one else out there as frustrated or worn out as I'm feeling right now? If so .. PLEASE let me know... then we can vent to each other about it.[/img]

03-23-2004, 09:52 AM
Hi Michelle: :lol:
Welcome to our forum. I think that most of us understand what you are going through...trying to hold it all together, even though you are extremely tired, always sick and even depressed. Also, we've all gone through the miriad of doctors who look at us as if we are crazy until we are finally diagnosed (I, like you, was happy to finally have a name for all of the things that I was going through!)
I was sickest with LUPUS (and all of the other diseases that tag along with LUPUS) while I was working full-time, working on my masters degree full-time, had two young children, a home and a husband!! I look back on those days and often wonder..."What the hell was I thinking? How did I do it? WHY did I do it?"
I guess I did it, like you, because I had a goal and I HAD to do it!
I think that it would be an excellent idea for you to hire someone to clean your house..at least once/week. You won't believe how much stress just that one thing will relieve. Instead of obsessing about what has to be done, you can make a list for the housekeeper instead! Then, you will have a bit more time and energy for your children. But do consider this...perhaps, once in a while, hire a babysitter for the children while you lock yourself in your room and get total and complete rest!!! (I had to do both of the above many, many times throughout this disease!). I gave the babysitter strict instructions that I was not to be disturbed unless it was an emergency..to pretend that I was not at home!!
What medications are you taking for you LUPUS, Pericarditis, Raynaud's etc.?
I truly commend you for your strength, your outlook and for the wonderful job that you are doing as a single mother! You have much to be proud of and I think that you are a phenomenal woman!!
Remember...you are NOT ALONE with this illness! We are here to help you and to listen to you and to give you support and comfort!
Keep In Touch :P
Peace and Blessings

03-25-2004, 08:55 PM
Thank you so much for that reply. As I read it I literally started crying.

Those were the most encouraging thoughtful words that I've heard since I've moved away from home. Thank you so much for that.

To answer your question about the meds that I'm taking... well, I've been refusing most of them lately and trying new things that have had possitive results.

I was on so many medications at one point I could not even keep track of them and to be honest... I didn't feel that the majority helped me at all. I feel like my whole life has been meds and hospitals. And I decided to take charge by exploring different avenues.

Right now I've become a vegitarian, I take cranberry suppliments... (this helps with the kidneys more than any meds I've ever taken), meditation and relaxation therapy. I don't drink pop, or eat yeast... As you probably already know.. Lupus can cause an allery to yeast and if you eat it (I'm allergic to it)... you're probably not going to feel very well for the rest of the day. Further I stay away from sweets and watch my carbs because the yeast that is already in the body feeds and grows off of it.

I do take (some) anti inflammatories, IBprophin 600-800 mg only on days that I absolutley have to and Bextra.

I guess I'm looking at medications like this right now... If I absolutely need it, I'll take it, but if I can work through it naturally ... then I will.

I think too... that another reason is because when I have a few good days and am feeling good...or when I'm feeling good for a long period of time.. I know that it's not medication induced... it's that my lupus has taken a time out.

I'm finding that since I've quit taking so many meds...I have just as many good days and just as many bad as when I was taking medication.

Which makes me wonder of course how much consistantly taking medication really helps. (I know that the steriods have to be consistant to be safe and I think that detours me from taking them as well).

I don't know that the semi-natural way is the best... but it does help me more than consitantly taking meds. I'm certain that everyone is different... and I am finding that lupus effects everyone different. Bottom line... I think anyone with a chronic illness should get in tune with their bodies and do what works best for them.

Thank you again for your reply. Please keep in touch with me as well! :)


03-26-2004, 08:25 AM
You are ABSOLUTELY right....knowing your body is just as important as knowing this disease. Good for you for listening to your body and doing what is right FOR YOUR BODY!!!!!
I agree, if you are able to manage your disease without a lot of medications, then you are also able to control the quality of your life. It sounds to me like your body may be on its way to remission (remission, in lupus, only means that you are managing your disease without a lot of medications...it does not mean that the disease has gone away!!).
Some of us have to do years of medications before we can get to where you are! I truly admire you!!!
Continue to take good care of yourself......We are here for you!
Peace and Blessings

03-26-2004, 08:45 AM

I was wondering if when you became a vegitarian you started to feel better and your labs got better.
I went to a "holistic" MD by request of my husband who told me to become a vegitarian with no meat protien at all. If I did't I won't live to see my children graduate high school. I talked with my Rheumatologist and she told me there has been nothing to prove that it works.
I was just wondering your thoughts on the subject and how can I do it. It is very very hard for me.



03-26-2004, 08:47 AM

I was wondering if when you became a vegitarian you started to feel better and your labs got better.
I went to a "holistic" MD by request of my husband who told me to become a vegitarian with no meat protien at all. If I did't I won't live to see my children graduate high school. I talked with my Rheumatologist and she told me there has been nothing to prove that it works.
I was just wondering your thoughts on the subject and how can I do it. It is very very hard for me.



03-27-2004, 04:26 PM
Hi Kitty,

I did start feeling better on certain levels. First I would like to say that if you have Lupus Niphritis it is recommeded to lower your protien intake. I have been having kidney problems and will be undergoing testing for nephritis very soon.

My labs didn't really get better, but I have been able to digest my food ten times better. The fatigue isn't as bad as before because as you know - your body has to work pretty hard to digest meat.

Does anyone out there feel that way after they eat? My belly would get bloated, I'd feel incredibly fatigued after every meal. After I stopped eating meat... both of those symptoms got better.

If you are going to become a vegeterian I highly recommend talking to a dietition first! Becoming a vegiterian can be more harmful than good for you if you aren't sure of the foods your body needs in place of the meat.

03-27-2004, 04:35 PM
Susie you are very sweet. Thank you.

I did forget to mention one thing to you that you asked about in your 1st response.

What I take for Raynolds... A very hot shower! As often as needed. If it acts up at work, I have a heater on my desk blasting directly on me.

Also, I wanted to ask you about nephritis. It's looking like I most likely have it.. my C3 is low, blood in the urine, swollen eyes etc...I'm going to have the testing done soon, including a scope. But what I can't find out about is the prognosis of nephritis. Also, I really want to stay away from steriods and the only treatment that I've seen that actually helps nephritis is steriods. Does anyone know of other treatments? Maybe I should see Kitty's holistic doctor. From what I've read about Nephritis I have to admit... it looks pretty scary.

Susie, thanks again for your thoughtful and encouraging words.

03-30-2004, 11:19 AM
Mmichelle - Just wanted to wish you the best of luck with everything. I have Nephritis right now. Even though I am also doing traditional western medicine (Prednisone & Cellcept - didn't really have an option), I have always seen the value in Natural medicine. I have flip=flopped between vegetarianism & limited natural meat consumption, and I feel better when I eat at least a little meat - it helps my anemia a bit, too, which helps my energy level. However, I only eat hormone-free meat & organic food.

Anyway, I wanted to say that now that you are on the West coast, you have access to a larger number of Natural Medicine Practitioners. There are a lot of options for practitioners, and they can replace or supplement your western medicine, but it's important to be well-informed. I would suggest that you look for someone that is a Naturopthic Doctor, they usually have an ND after their name, and that has graduated from a good school of Natural Medicine. There is a great school in Seattle, Washington, called Bastyr University, and is very well -known and produces good doctors. There is a good school of Oriental Medicine in Portland, OR, too. I don't know of good schools in California, but what I did to find the right practitioner was to interview several until I found a right fit. They all gave free 15-30 minute consults for the first time. Also, it depends on what you are looking for - someone licensed in Acupunture & Chinese herbal medicine, too or just Naturopathy.

I think it is interesting that you have done so well without steroids, etc. My Naturopath would say that indicates you could respond really well to Natural Medicine & herbs.

Anyway, sorry for the long post, but I really wish you the best in your search for the best treatment for Nephritis.


03-30-2004, 03:27 PM
Hi Missy,

Thank you for your reply and for your advise on finding the right doctor.

I don't know that I've done better without the meds as someone who is on them. I was in remission but since I've been out of remission for about a year or more I feel like I have more bad days than good. However I don't have any more bad days than someone who is taking a lot of meds. I guess I feel like the medications for the most part mask symptoms with new symptoms.

I'm sorry to hear you have nephritis. Nephritis is new to me and from what I've read about it it seems like you either have to take the steriods or medication with bad side effects or die. I have to admitt Nephritis scares me.

Do you know what the long term prognosis is with Nephritis? I can't find any studies that report past the first five years of diagnosis.

If you don't mind me asking what were/are your symptoms of Nephritis? Mine started with UTI's about every 6 -8 weeks. A lot of blood in the urine then Kidney pain, now I have swelling of my face hands, feet...

I wish you the best and appreciate all of your advise.
Please keep in touch and take care.


03-31-2004, 02:14 PM
There has been extensive studies and a lot written about the treatmentof Lupus nephritis and there are a lot of opinions regarding the best and safest approach to the therapy. A patient with Lupus Nephritis presents a complex therapeutic approach. Treatment of Lupus nephritis is prolonged, complex and potentially toxic. However, prognosis and outcome of the disease can usually be improved, dramatically, by treatment. It is very important for your doctors to accurately asses the type and severity of your renal involvement. If you have mild glomerulonephritis (Type 1 and Type II WHO classification), you will generally have a good prognosis and may not require therapy or you might respond well to short courses of treatment. More severe forms of lupus nephritis (Type III, IV and V) require aggressive therapy with cytotoxic (cyclophosphamide, mycophenolate mofetil, azathiaprine, tacrolimus), high (pulse) doses of steroids. In some resistant, difficult and severe cases of renal involvement, patients are treated with plasmapheresis. I know that once you start treatment, you will want to see improvement and stop the possibly toxic treatments. Treatment for Lupus Nephritis is usually long, but it can be stopped at such time as immunological tests are back to normal, proteinuria disappears and renal function is stable.
As far as the prognosis of Lupus nephritis, it is pretty much as you have found; five year survival of treated patients with Lupus nephritis from 1990 to 1995 was 82%. That means that only 10-15% of patients with lupus nephritis progressed to end-stage renal failure. Renal failure supervenes usually within the first decade of follow-up. Even patients in renal failure have the option of A proportion of Lupus nephritis patients in endstage renal failure st renal transplant and the recurrence of Lupus nephritis in renal transplant cases is rare.
So, even at its worse..Lupus Nephritis can have a promising prognosis. What stage (TYPE I, II, III, IV or V?)of nehpritis are you in?
I know how frightening all of this can be. We are here for you

03-31-2004, 08:04 PM
Thanks, Saysusie for all the info - you are always a great resource. Mmichelle - I really had no symptoms of nephritis other than increasing severity of anemia over the course of 9 months, which I kepy bugging my MD about, but they kept saying, "we'll test it again in a few months" since I appeared so "healthy" (I always had viruses, too). Anyway, I asked them to re-do the bloodwork two months early since I was moving, and I noticed I was going to the bathroom more frequently, but no pain or anything else. I guess my urine was a bit cloudy, but I didn't see it because I was taking vitamins to try to get my iron level up! I was Rxed antibiotics for a UTI in the meantime, got soooo sick on them, them found out it wasn't an infection after all, and my anemia was almost at transfusion levels. Good thing I had them test my blood early!

I see the nephrologist in my new community for the first time Monday, so I'm hoping to learn more and now I'm going to ask about the severity (now that I know about hey Type I,II, etc). I know that things have improved for my kidneys since I started the Cellcept, as the amount of protein in my urine has decreased and my creatinine clearance has increased. I find it a bit frustrating, because the kidneys affect so much - I have high BP. And Doctors are weird, too. The Rheumy doesn't want to get into the kidneys, but refer you, and you have to ask your GP about the blood pressure and attributed meds, but they don't want to touch the Lupus stuff. It keeps me really busy running to all the appointments! What I think is weird is that I have kidney pain NOW, when I didn't have when my kidneys were worse and undiagnosed. I'll have to ask about that on Monday, too.

Take care and keep me updated about your kidney! And thanks, again, Saysusie - this is great info to share with my husband, who can get a little confused by it all -as we all do.


04-09-2004, 08:35 PM
Hi all - My doc called today, and told me I have SLE, and he's referred me to a Rheumatologist - whom I have not yet seen. I don't know about this disease, except that the concept of my body attacking itself really has my head in a twist. And then, there's the whole fertility issue. My husband and I have been trying for a while - I have miscarried, which I hear is pretty common among us SLE folks. OK - enough rambling.

What do I ask the rheumatologist when I see him? How do they find out if my organs are affected?

Iím scared, and I donít know anything about this diseaseÖ

Thanks -

04-21-2004, 06:58 PM
Catiedid -

They'll do lots of tests at the Rheumatologist and ask you a lot of questions about symptoms, as well as examine you to determine if you have organ involvement. My kidny specialist told me that about 50 -75 % of SLE sufferers have kidney involvement at some point, but it can range in the amount of problems it causes quite drastically. I have Type 4 Nephritis, the worst you can have, and the kidney doc said I'm a long way form dialysis and I think I'm doing pretty good! If you're like most of us, it'll be somewhat of a relief to know what is going on after years of feeling not quite right. I have read that SLE causes an increase % of miscarriages, but so much else plays into miscarriage, it's hard to attribute it. My Rhuematologist also did another test that saw if I had an increased chance of clotting and/or miscarriage. You could ask about that test, too. I can't remember what it's called, but I have it with my labs in my filing system if you need it.

Good luck and take care,