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monicakelly1
06-25-2006, 05:40 AM
Hi from San Francisco!

So glad I found this site. I'm 37, single, and a month and 1/2 ago, I was as healthy as can be!

Since then, I have been diagnosed with Stage 4 (?) Lupus, and have so many questions!

I started with the joint pain, low fever, then swollen joints, face rash. Within days, this moved on to difficulty breathing, chest congestion, sore throat, extreme fatigue. I was prescribed prednisone, which seemed to create more problems for me - constant headaches, tinnitus and edema (gained 25 lbs in 7 days!). Joint pain changed to muscle pain. My thumb has been numb for 3 weeks now and every 30 minutes or so a tingling sensation goes up and down my right arm.
Creatinine level went up to 1.6 - had a kidney biopsy. Now I am completely anemic and have high blood pressure!

I've been taking 40 mg Prednisone for almost 2 months (isn't this too long to be on steroids?)
1000 mg of CellCept (for3 weeks)
400 mg of Plaquinell (for 6 weeks)
When does this medicine start kicking in?

Questions:
1. How many stages of lupus are there?
2. Do you feel overmedicated/ over prescribed? How many different drugs can they pile on? Do they all work together?
3. Has anyone had any luck with any natural remedies/alternatives?
I feel like my doctors only prescribe medication and don't tell me to eat differently - which I find odd. Wouldn't this go hand in hand?
4. Besides a full medical disability from work, is there any financial support / public grants for lupus?
5. Would you recommend an anti-inflammatory diet that makes you feel better during a flare? I seem to puff up (edema) every afternoon and I'm not sure if it's my diet or not.
6. Has anyone had any luck with acupuncture?

Everyone tells me to lower stress levels, but as the medical bills are rolling in, it's tough. I have insurance, but since I only used to go to the doctor annually, I don't have the best coverage! I learned the hard way about out of network doctors, and what's covered and what's not. If I have to live with this for the rest of my life, it won't take long to be completely broke!

It's really nice to have someone to chat with and ask these questions.

Thanks!
Monica

SoleSinger
06-25-2006, 09:02 AM
Is it stage 4 nephritis?? If so there are 5... I don't know about other types...

How many meds can they pile on? Well... I take:
Prednisone (Started at 80mg a year ago now down to 5)
Plauqenil (Just started this one, they say it takes between six weeks and four months to start feel effects)
Cozaar (100mgs)
Lisinopril(40mgs)

I take the previous two to keep the protein in my blood not for high blood pressure...

Cellcept (3,000mgs)
Synthroid (.075mgs)
Klor-con (40 MEQ)
Lasix (80mgs/day)
Metolazone (2.5mgs)
Zocor (40 mgs)
Trazodone (100 mgs)

Plus I take a calcium supplement, a vit D supplement, a prenatal vitamin inorder to keep my iron at a steady level, and vit C.

The problem with natural remedies is that if you have kidney involvement, a lot of them are hard on your kidneys which is why they steer you clear of them... I thought it might be a hoax... But the homeopath told me that, too shoot!!

As for diet, the key to Lupus is all about balance... Sure there are certain things that they say to avoid, or limit.. Soy, alphalpha sprouts, nightshades too much red meat... But, I was told at least to keep a good balance of everything...

SALT is important to limit... But don't drop completely... It's a fine line to keep all of your electrolytes balanced and that's important!!!

I'm sure someone else will be of more help, but I wanted to say hi! And you are not alone! It's TOTALLY frustrating!!! People tell me to lower my stress level all the time... But then, I tell them my BP already goes as low as 70/30... If it gets any lower I'll die!! I NEED the stress!! LOL!

:lol: :lol: :lol: :lol: :lol:

ButterflyRN
06-25-2006, 06:42 PM
Oh the amount of meds they can give you. Here's what I'm on

1. Prednisone 30mg/day (I've been on that for 3 months now)- to answer your question I've been on it for 16 years. I've gained 25 lbs- watch the salt intake (don't go over recommended 2400mg/day)
2. Plaquenil 400mg a day- this med takes a few months to actually start working- it has to build up in your system
3. Cellcept 1500 mg twice a day (for protein in my urine)
4. Atacand 16mg q day ( for protein in my urine)
5. Potassium 40 meq a day ( my kidneys loose it)
6 Magnesium 800mg a day ( my kidneys loose it)
7. Lasix 40mg a day (most recently put on for increased swelling in my ankles- due to the cellcept they think)
8. Calcium
9. Actonel- thanks to the prednisone
A couple of months ago I just finished up a cycle of cytoxan and rituxan IV for the lupus nephritis. I have stage 4 lupus nephritis which I've had since I was 12 and it flared up over the last 6 months.

Oh the joys of lupus.

Eat lots of fish - the omega 3's are great for anti-inflammatory

Well I too like solesinger know that others can help you more with some of your questions! Welcome to our family and we look forward to talking with you and giving you lots of support!!! :lol: :lol: :lol:

monicakelly1
06-25-2006, 07:10 PM
Thanks for gearing me up for probably more medication to look forward to! My list is nothing compared to yours. I'm seeing my nephrologist tomorrow. I believe he wants to add to my list a medication that stimulates my bone marrow to create more red blood cells. (for anemia)

I know it varies with everyone, but how long did it take after you were first diagnosed to get on the right medication and start feeling normal again? It's been 2 months for me and I seem to feel worse - Well not really worse - I just get different symptoms daily.

I'm worried it this doesn't end soon, I'll have no hair left! I lose handfuls of hair every day.

Thanks again for your support! :D
Monica

SoleSinger
06-25-2006, 07:34 PM
This is a tricky question...You will learn, that your definition of "NORMAL" will be different from what it once was... I was dx'd July of last year, and I still feel like crap most of the time... At least, compared to how I used to be... It's different for everyone, but for me good days are when I can go out without my cane, and I'm not in TOO much pain, and I'm not TOO dizzy, and I'm not TOO tired, and I don't need my glasses, and my stomach isn't bothering me, and I'm not twitching, and...

Normal is definitely relative...

For your hair... Try Nioxin shampoo and scalp therapy... It's expensive, but you don't need much and it helps keep hair in your head... It also sometimes helps with sores on your scalp if you get them... But make sure that you have a leave on conditioner and deep condition once a week because it dries your hair out significantly. The prenatal vitamins are also very good for your hair and nails! (As well as giving you more iron than regular multivitamins...)

Your nephrologist may just put you on an iron supplement Which are really cheap at the grocery store...

Anyway, good luck! and let us know how the nephro goes! And don't be afraid to ask away!!!

ButterflyRN
06-26-2006, 07:49 AM
Another shampoo/conditioner that I use is made by Aveda called Scalp Benefits. It too is a little expensive but works well. I also tried the kind that SoleSinger uses. It too is good.
Just to let you know I've also had issues with anemia in the past and have been on a sub-q injection called Procrit to help boost RBC's. I'm sure that many others have also been on Procrit.
Good Luck at the nephrologist and let us know!

monicakelly1
06-26-2006, 11:09 AM
I found a lot of different Nioxin products online here:
http://sn2000.com/cgi-bin/shop.cgi?command=nioxin

Which one should I get? Can I just get the shampoo and use my own conditioner, or do I need to get the whole program for it to start working?

There are shampoos, scalp therapies, scalp treatments, follicle boosters, recharging complex, intensive therapy and a starter kit.

What would you recommend?

Thanks!

SoleSinger
06-26-2006, 11:18 AM
The essential ones are the shampoo and scalp therapy (The conditioner)... They don't work alone... The other treatments help, but aren't essential... And if you ARE only going to get one, get the scalp therapy... But, again, it doesn't work as well with out the shampoo and the shampoo I find doesn't work at all without the scalp therapy...

Sheryl
06-26-2006, 01:40 PM
Hi Monica -

"Welcome" to the lupus message board and a great group of supportive people. I only put "welcome" in quotes, because it seems strange to welcome someone to a disease. :?

I too was healthy as can be just three months ago. Scary how suddenly things can change, isn't it!?! I hope that your issues can be brought under control soon! I know what you mean about costs - in the first couple months just my office visit and prescription co-pays were crazy! Hopefully when everything gets sorted out, you should be able to reduce the number of visits and tests.

I don't have any specific answers to any of your questions, except I have started with acupuncture - have only been twice, so I don't think I can say whether its helped or not yet.

Regarding the tingling and numbness, you might want to ask your doctors about antiphospholipid syndrome, which is one of the "overlap" conditions seen with lupus.

Sorry I don't have more specific answers, but I'm sure you'll get lots of feedback here.

Sheryl

MR_Jill
06-26-2006, 07:44 PM
I can't believe how many medications everyone takes!! I had no idea. I am only on plaquenil, and I have been pretty desperate to get off of it, I guess I should have been thanking my lucky stars!

Anyway, Monica, I have talked on this forum before about diet, and I'm sure that some readers may think I am crazy...but I truly believe that diet has a great affect on us when we are dealing with Lupus.

I started a whole food vegan diet a few months ago, and feel great! i have gone from taking 200mg twice a day of Plaquneil to 200mg once every other day...and hopefully will soon be off any and all meds. I dont recommend lowering or tapering off of any meds without consulting your rhuematolgist first, but I do recommend that you read Dr. Joel Furhman's book "Eat to Live". There is also an ebook online you can find called "The Lupus Recovery Diet" written by a woman who has been in remission for 10 years. I'm sure not everything works for everyone...as we all know how this disease affects all so differently...but so far it has worked for me and if I can share that and help someone else..that is great!!

I was so desperate to be 'rid' of this disease and to be off medication that I was willing to try anything..even if it meant an extreme diet...so far it has been worth it for me. Basically I do not eat any animal products whatsoever..I eat mostly veggies, fruits, whole grains (excpet in my case wheat..) some legumes, nuts and seeds....I do not eat anything processed or refined, no caffeine, no sugar, salt...etc. plus i omit the usual alfalfa sprouts and corn. I eat soybeans, but not soy products as they are high in sodium abyway. I also take a vit D supplement, a multi-vitamin, and fish oil. Someone said that Fish oils are great for inflammation...they are right! but eating a lot of certain types of fish can be risky due to mercury and other toxins....it is key for us lupus patients to avoid adding any toxins into our bodies! You can find fish oils that are highly concentrated and claim to be purified so that they dont contain mercury or anything else.

It is extreme I know...and i know that many of my friends think im crazy..but they all know that when faced with the alternative...which was feeling like s***t all the time, it is worth it! I hope this helps!

monicakelly1
06-26-2006, 10:22 PM
Thanks for the diet advice. I've been seeing a nutritionist who has given me a lot of the same advice. It's easier to eat well these days, since I am never really hungry.

Diet plays a huge role in a "healthy" person's life - It's odd that my doctors don't focus on that at all.

Glad to hear that you're only taking plaquinell. It gives me hope

I just saw my kidney doctor today, and he said I have the worst kind of lupus - whatever that means!

I'm going to an acupuncturist tomorrow - I feel so "new age", but I've heard really great things from many people about the results. I'll let everyone know how it goes.

I just found a string of emails through MR_Jill about someone named Brett going the "natural" route - How would I email Brett to find out how it's going?

I just can't imagine being on drugs for the rest of my life. Sometimes I really feel like the side effect of the drugs are worse than this crazy disease!

Is it the plaquinell that is causing problems on my skin and hair? I thought it was all the sunscreen I've been wearing!

Thanks everyone!
Monica

monicakelly1
06-26-2006, 10:31 PM
Forgot to mention to Sheryl - I asked my doctor about the antiphospholipid syndrome and he added that test to my next blood test, so we'll see if I have that too! I'm hoping the tingling is just a pinched nerve or something.

Monica[/quote]

SoleSinger
06-26-2006, 10:39 PM
The problems with your skin and hair may be due to your kidney's not processing correctly... When I was first dx'd my albumin level was at 0 when it should be between 3.4 and 5.6.... If you are losing protein it will do a number on your hair and skin!! But, it gets better... It could also be a reason for your hair loss, too... I'm sorry about your Lupus... :(

Keep us posted!

catlady4520
06-26-2006, 11:09 PM
I know what you all mean by the number of meds. I work for Express Scripts so have good prescription benefits but I still spend quite a bit every month. Here's my daily list:

For Lupus:
Cellcept - total of 2000mg a day
Plaquenil 200mg - 1 2x daily

For all the other things wrong with me!
Bromfenex
Benicar Hct 20mg
Doxepin 10mg - 2nightly
Baclofen 10mg - 2 nightly
Lyrica 100mg (1 3x daily for seizure (from the lupus)
Nexium 1x daily
Gabitril 4mg - 5 daily for seizures
Flonase
Synthroid
Ambien CR 12.5 (headaches from lupus)
Oxycontin 20mg (currently 2x daily from post-op staph infections from hip surgery)
Percocet 5/325 - 1 3x daily for same as above
Estradiol 1mg - menopause
Calcium
And a one a day weight smart vitamin.

Sheryl
06-27-2006, 07:39 AM
Forgot to mention to Sheryl - I asked my doctor about the antiphospholipid syndrome and he added that test to my next blood test, so we'll see if I have that too! I'm hoping the tingling is just a pinched nerve or something.

Monica[/quote]

I hope you don't have it - but it's better to know than not know, in my opinion. By the way, I'm only on plaquenil too.

I think it's "just lupus" that makes our hair fall out, not the plaquenil... but if it doesn't stop soon, I'm going to be bald> :roll:

Keep us posted on how you're doing!

Teresa
06-27-2006, 03:16 PM
I too like others had tremendous hair loss. My Dr hear at UCSF said that they have had good results with cancer patients taking high doses of B -complex. So a few years ago I started taking a super b complex twice a day and my hair came back. I had course hair and now it is fine but it is all mine. Now I guess I don't really know if it was the complex but I'm afraid to stop taking it because I like my hair. Also my mom has reuatoid (sorry about the spelling I can't think of how to spell it) arthritis and she is taking the complex and got her hair back too.

The cost is cheaper than all the shampoos and conditioners for hair loss you might ask your Dr if you can give it a try.

monicakelly1
06-27-2006, 03:36 PM
Thanks Teresa! I'll check with my doctor. My hair is wavy, but was always pretty fine, so now I have crazy thin flyaway hair! My mom keep telling me to stop focusing on how I look, but I feel like I'm morphing into someone else. It's weird. I have to stop being so vain. 8) I tried to lift light weights this morning, and almost passed out from this anemia. Oh well - I'll try again next week.

Missy
07-02-2006, 04:37 PM
Hello -

Type 4 lupus nephritis is the worst kind of nephritis you can have - I was on twice the dose of Cellcept you are on at my worst (also type 4). Now, I'm down to 1000mg a day. Type 5 nephritis is a whole different ball game and can be better or worse.

Anyhow, my hair got sooooooo much better after reducing prednisone below 10 mg a day - even better at 5 mg. I'm now off! Except for days I need it for other reasons. MY hair is now the same it was before lupus.

I'm also on plaquenil, lisinopril (for high bp) - everything else I got off of! So there is hope!

I've also been doing acupuncture since the beginning, and I think it's really helpful for me. I notice a big difference when I don't go for a while. Yoga also helps with my stress and to focus myself.

The diet thing did not work for me. I think this disease is too complex for one solution for everyone. Just be careful with any drastic diet changes, as I had some major problems when I tried a similar diet.

Wishing you wellness,

yaya
08-21-2006, 07:32 PM
Hi, My name is Marcie and I have Lupus or maybe I don't. I ask my doctor at every visit if it (lupus) has gone away yet and every time she says "No and it's not going to.". I was dx in Jan 2000 at 40 when I had a complete hyst. My ANA was high and my Gynocologist is the doctor that put it all together. I have always been sick even as a child but I still can't seem to accept this "thing", this "condition" that I can't control even though I now have a "name" for it. I'm presently taking the following meds:

Synthriod 100mcg
Effexor 225 mg (for hot flashes since I can't take HRT because of prior blood clots)
Norco-pain
Xanax-anxiety
Elavil-Leg/Body Spasms at night
Plaquinel
Prednisone
Ambien
Imuran
Others that I'm sure I have left off.

I have tried repeatly to stop taking the Prednisone but that is the only thing that will keep the joint pain under control.

Just when I think I'm getting better the weather changes or I have an especially stressful week and I'm quickly reminded that "it controls me and not the other way around". I am blessed (or not) with my own business. I'm 45 with a wonderful husband (business partner), a 25 yr old daughter, 13 yr old son, and 2 yr old granddaughter. I feel extremely guilty because my daughter also has Lupus and I'm afraid my granddaughter and son have it also. My husband is very understanding but I feel like I have let him down also since I usually have no energy for anything except resting when we aren't working. It's a good thing we work together or we probably wouldn't spend much time together because I'm alway so tired.

I just keep thinking that I'll be able to manage this "thing called Lupus" but that hasn't happened yet and that really bothers me at times.

Thanks for providing a place to vent. I'm normally a very private and quiet person and it's hard for me to open up to others.

Thanks again.

Yaya

browneyedgirl53
08-22-2006, 12:20 PM
Hi YaYa,

First, I want to say welcome. You have found the perfect place to share, we're all about in the same boat. And yes, we wish everyday this would all go away, however; our goal is to make our lives as optimal as we can with what we have......and sister, you have a whole lotta love right here!!! And this is the ABSOLUTE BEST lupus support site on the planet!!

We're here to listen, encourage, laugh with, cry with....and hold your worries in our hands if even for a short while, so you can catch your breath.

Hang in there, and hold on. We're all here for each other. So kick off your shoes, and stay a while....we'll make you feel right at home.

Much love,
Browneyedgirl

p.s. For many years I worked for a greek family, and when their grandmother came to visit; you would here loud shots of joy....and they were all screamin' YAYA....and one of my all time favorite movies is the
Secrets of the YaYa Sisterhood - so you're a rock star, in my book.