Lupus Foundation of America - Lupus Treatments http://ft003159.fusetalkcommunity.com/index.cfm?forumid=1 FuseTalk Hosting Executive Plan its all about the clots!!!!!!! (this one's for you roe and jan......... well everyone) http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9846 2010-09-06T01:26:43 -05.00 Bonbon 13 http://www.reuters.com/article/idUSLDE67T0FC20100901

hey roe, yr md sure was ahead of the pack!

hey jan did you know about this already...?

(i know my platelet count was consistently elevated before i got on the kineret and they came right down and that was supposed to be a big boon to being on the med.)


]]> cytoxin http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9824 2010-09-04T22:36:06 -05.00 cupcake4488 6 affraid to start on this treatment. I know it is the weaker of the chemos out there but my immune system is already shot and I can't afford to get a major infection since that could kill me. It jsut seems like every time I think I have the cytoxin thing figured out, im still trying to find a doc to write for it. My ID wont, my neuro said he would but would rpeffer not to plus the travel issue, i couldn't afford to go every 3 wks for ivig and every 4 for the cytoxin when i live 3 hrs away, no money tree in my backyard.

I have given all my records to the oncology dept at another hospital and they were suposed to call me back and let me know if hte doc there would take my case or not, as of now i haven't heard back from them which makes me a little nervous since the docs at this place are known to have an ego problem (go figure) It jsut seems like nothign is going smooth with this and now my infection in my foot may be coming back which will push my start of cytoxin back again, i dunno maybe its a sign.

so any adivce or those that have taken this how bad is it really?

]]> Starting Cellcept http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9819 2010-09-04T13:53:31 -05.00 CourtneyLeigh 6 I saw my doc. this week and they are starting me on cellcept (4 x day) to treat the nephritis.  Both my rheumy and kidney doc. are keeping me off steroids..... perhaps because I did not react well the first time and it was doing more harm than good. 

I'm trying NOT to read about the side effects for cellcept, but I am curious if anyone had success with this drug.  My docs are giving it 4 weeks.....if my tests don't improve, they will start me on cytoxin injections in October. 

Thanks for any input

-Courtney

]]> Steroid Injection/Headache http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9803 2010-09-03T17:15:17 -05.00 Kathryne 3 After being diagnosed last month, I spent a week and a half at home, a week in the hosptial, another week at home. I returned to work part time last week, and just this past Monday I went back full time. Sunday before returning to work full time, I developed a severe head cold. Yesterday I saw my rheumatologist, who gave me a steroid injection. This morning I woke up with the worst headache of my life. I've spent the day in bed and it's finally subsided. Is this a typical reaction? Any idea how long it takes for the medication to kick in and start helping with the flare? Are there other side effects I should be prepared for?

]]> Plaquenil http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9793 2010-09-03T10:25:19 -05.00 2Nsunshine 6 Just wondering how long it took for the Plaquenil to kick in for each of you, and how did you know it was starting to work?  I'm getting impatient

Thanks,

Amy

]]> Drug-induced hyperpigmentation may warrant change in therapy http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9791 2010-09-02T19:11:50 -05.00 Anthony 3 Drug-induced hyperpigmentation may warrant change in therapy

Another class of agents that are notorious for producing hyperpigmentation is antimalarial drugs, such as hydroxychloroquine, Dr. Chiu says. The antimalarial drugs are prescribed for treating autoimmune diseases, such as lupus. "It can cause darkening of the skin," he says.

link

]]> Rituxan Infusion http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9784 2010-09-02T12:41:49 -05.00 Khealey1 3 Hello all,

 

I was officially diagnosed with Lupus about 6 months ago.  I’ve been experiencing various Lupus symptoms for two years.  I have taken all medications for Lupus with no success.  My last flare-up I was off work for 3 months.  At this point, my doctor wants to try Rituxan infusion.  Has anyone had success with this treatment and what are some of the side effects I should expect?  Any information would help.

 

Regards,

 

Kasey

]]> Going off Prednisone after 30 days http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9775 2010-09-02T02:04:08 -05.00 Andromeda 12 I've been on prednisone for 30 days (20 mg a day for 2 weeks and then 10 mg a day for 16 days) and I'm to stop taking it this weekend.  I cannot wait to stop this drug but am also afraid of what I will feel like without it.  Although it gives me energy like Super Woman, it aggitates me and gives me horrible insomnia!  I have hardly had any sleep for the past month.  My question is what am I going to feel after 30 days of prednisone?  It has helped my body aches, headaches, energy level and my massive hives are gone now (from my plaquenil allergy).  Am I going to crash off of this stuff?  Will I have a rebound effect and feel really lousy again or maybe even worse?  My doctor says I don't need to taper down my dosage since I only took it 30 days. Or, maybe I'll just feel good for a while until it wears off completely?  Just wondering what others may have experienced when faced with a similair situation.

]]> Fish and Primrose Oil http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9763 2010-09-01T18:09:29 -05.00 william 1 I find that taking one capsule of fish oil and three capsules of primrose oil three times a day keeps my lupus symptoms at bay. Whenever I stop this course of treatment, my lupus symptoms come back.

]]> Companies Race to Develop Drugs to Reduce Blood-Clotting Problems http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9748 2010-08-31T16:32:05 -05.00 Anthony 1 Companies Race to Develop Drugs to Reduce Blood-Clotting Problems

Leading drug makers are competing to reach the market with a new class of pills to prevent the kind of dangerous blood clots in the veins and lungs that can travel to the brain, causing strokes.

The drugs are aimed at millions of people who have a higher than normal risk for clotting or stroke, like patients undergoing hip replacement operations or those with an irregular heartbeat disorder called atrial fibrillation. If the Food and Drug Administration approves the medications, the market for this new generation of pills could generate $10 billion or more in annual sales, industry analysts said.

The standard treatment for people with atrial fibrillation is warfarin, a powerful 60-year-old drug that originated as a rat poison. Warfarin, a generic drug also sold under the brand name Coumadin, is highly effective but it has drawbacks.

NYT

]]> Rituxan Side Effects http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9745 2010-08-31T11:50:05 -05.00 katiu83 3 Hi everyone,

So nothing is working on this almost 2 year flare on me.  It's getting FRUSTRATING!  Especially because the main and primary side effect I've had since I did my first round of Solumedrol last year has been swelling.  I'm talking 20 lbs of fluid all over, painful, stretched out and purple in some areas.  Yes, my kidneys are leaking almost 4 grams of protein, but I was in a flare in 2002 where I was leaking 7 grams.  I cannot get rid of this swelling.  It's not food related, just the disease and I'm so tired.  Good thing is that my insurance approved Rituxan so I'm going in on Friday for it.  What side effects can I expect?  I'll research the long term effects more, but what short term side effects, and how long will they last?  I've been on Cytoxan and don't want to risk the infertility again... What is methotrexate used for?  Also, has anyone had this kind of swelling from their nephritis?

I'd appreciate any input... thanks everyone..

]]> Enbrel http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9740 2010-08-31T02:04:57 -05.00 travelerOBRN 11 I just started Enbrel 6 weeks ago. The first 2 injections bruised some but otherwise I did ok. My next 4 injections have reacted with a reddened area the size of an egg, is warm to touch, painful, itchy and bruising within 36 hours of the injection. After the first allergic reaction my doc said that could happen occasionally but not every time and to keep taking the Enbrel. But 4 doses in a row? Anyone else have a reaction like this?

]]> Nuvigil anyone?? http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9735 2010-08-30T20:02:28 -05.00 sierramama 3 My rheumy gave me  an RX for Nuvigil for the overwhelming exhaustion that hits me about 4 hours after getting up in a.m.

Has anyone had any experience with this for exhaustion treatment?

It is usually given for narcolepsy, not for exhaustion.

I just tapered back to 5 mg of prednisone and it's like running in to that damned train again!

]]> Prednisone and Tramadol a bad combo? http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9709 2010-08-28T07:29:43 -05.00 KHubbs108 4 Originally posted by: VickiLynn Be very careful about tramadol.  After going to Medscape and typing in all of my medications -- I found out that tramadol with prednisone has some very severe side affects.  There are also side affects with antidepressant medications as well.

 

I stopped taking it after my doctor wanted to know who put me on the tramadol and I told her she did.  She made me stop it immediately.  After searching Medscape, I found out why.  She could have killed me.

It helped my pain alot too.

 

I just read this in another thread and it alarmec me.  Are you sure about this tramadol/prednisone combo being dangerous?  I recently had to be put on prednisone for a SLE flare and I've been taking tramadol as well to help with the pain.  My rhuemy knows i take tramadol already.  Wouldnt she have said to stop taking it when she started me on Prednisone?  Also, that tramadol/Prednisone combo, when typed into Medscape didnt reveal any interactions when I checked.  Whats up?

]]> Increasing Vit D3 Levels May Reduce Lupus-Related Fatigue http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9697 2010-08-27T08:17:38 -05.00 Anthony 1 Increasing 25(OH)D Levels May Reduce Lupus-Related Fatigue

Increasing [Vit D3] levels may reduce fatigue in patients with systemic lupus erythematosus (SLE) but not SLE severity, according to the results of an observational study reported in the August issue of Arthritis Care Research.

Medscape

]]> been on dapsone for awhile.... http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9689 2010-08-26T22:07:13 -05.00 peaches35 4 Hi everyone I just wanted to update you on my med. Duke put me on. I was put on Dapsone 100mg for my lupus panniculitis. So far so good I have a little more headaches now and for some reason for the last two weeks I have a rash on my right arm and rash under the skin on my left arm. It look almost like I was allergic to something but it haven't gotten any bigger and it hasn't went away.I don't know if the dapsone has anything to do with it but I didn't have it before than. I haven't had anymore labs done since I started on the med so I am not sure blood test wise how its going. My legs are the reason why they put me on the dapsone its looking alot better. I am really happy of the outcome with them. Look like my flare is over on my legs with the help of dapsone. I just wanted to update you all especially Cath. Thanks so much for being concern...

]]> Prescription Phobia.... http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9682 2010-08-26T12:49:15 -05.00 channy24 2 I was diagnosed with lupus in april and since then i have been in so much pain mostly in my wrists and knees. Which i use obviously everyday, i have a 3 yr old son so i cant just rest all day even though i would definitly like to. I am scared to take anything for the pain because i am already taking Plaquenil and my mom died recently from mixing prescriptions.... its caused me to be very wary of most medicines, i dont even like taking advil but i am finding it harder and harder to get my daily chores done...its hard to do the dishes when your wrists hurt so much. I was just wondering if anybody could tell me what they take on a daily basis and if u have ever had a bad reaction from mixing plaquenil with anything.

]]> Broccoli 'boosts' healthy gut http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9676 2010-08-26T08:06:55 -05.00 Anthony 9

Extracts of broccoli and banana may help in fighting stomach problems, research suggests.

Laboratory studies show fibres from the vegetables may boost the body's natural defences against stomach infections.

Trials are under way to see if they could be used as a medical food for patients with Crohn's disease.

Crohn's disease is an inflammatory bowel disease that causes symptoms such as diarrhoea and abdominal pain.

more from the BBC

]]> NO MORE Plaquenil! http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9671 2010-08-25T21:51:39 -05.00 SammyMay 5 My Rhem Dr put me on plaquenil, and for the short time I was on it (1 month) I was dizzy/motion sick and felt like the life was sucked out of me....  I was like a walking zombie, I could barley fold clothes.  So she took me off it due to the dizzy issue, and in turn gave me a list of other drugs I could try.  So...these are the results of not being on drugs!

day 1 didn't have an overwhelming weakness feeling

day 2 more energy did some cleaning, shopping

day 3 was able to take a walk, clean my house, do laundry, cook dinner and for once felt like my old self

My muscles still feel weak due to my lack of energy for that month, but I don't care.

I'm kinda at a loss as to the next step, but I do know I NEVER EVER WANT TO FEEL THAT WAY AGAIN....

]]> Has anyone heard of cordyceps? http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9666 2010-08-25T14:04:21 -05.00 cgmartin79 3 Has anyone ever used cordyceps?  My mom watched a special on tv and it talked about using cordyceps for Lupus.  I've looked it up on the internet but can't find any studies on it.

Thanks!

]]> Vitamin D influences more than 200 genes, including some that play a role in serious autoimmune conditions http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9641 2010-08-23T22:12:34 -05.00 Anthony 1

Vitamin D influences more than 200 genes, including some that play a role in serious autoimmune conditions and cancer, a study has shown.

The research highlights the extent to which vitamin D protects against a wide range of diseases.

Scientists mapped 2,776 points where the vitamin interacts with elements of DNA, including those that make up genes.

The sites were unusually concentrated near genes associated with autoimmune disorders such as multiple sclerosis (MS), Crohn's disease, lupus, and rheumatoid arthritis.

They were also found close to genes for cancers such as chronic lymphocytic leukaemia and bowel cancer.

The researchers showed that vitamin D had a significant impact on the activity of 229 specific genes, including ones previously associated with MS, Crohn's disease and type 1 diabetes - another autoimmune condition.

"Our study shows quite dramatically the wide-ranging influence that vitamin D exerts over our health," said Dr Andreas Heger, from the Medical Research Council Functional Genomics Unit at Oxford University.

Working in the laboratory, the scientists isolated fragments of DNA in cells to study the effects of exposure to calcitriol, the "active" form of vitamin D.

Their findings are published in the journal Genome Research.

Copyright © 2010 The Press Association.

]]> Herbal Remedy --Ganoderma? http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9634 2010-08-23T18:57:24 -05.00 KBass2001 2 Has anyone else tried ganoderma to help with their Lupus? I was diagnosed in May and felt like everything was just spiraling downward and out of control. I had zero tolerance of the sun & my skin rash was horrible. I decided to try to look for natural remedies because I was scared of Plaquenil (I already had retina damage due to the Lupus). So the first thing I did was change my diet...& I started taking a supplement called Green Vibrance. It did wonders as far as giving me energy and making me feel good everyday. I love Green Vibrance. But it didn't change my primary Lupus issues...skin rash & sun sensitivity. As time progressed, my sun sensitivity got worse and worse. I finally started taking Plaquenil in early July after getting a horrible sun rash over July 4th wknd.  Of course Plaquenil takes a long time to start working, but I was hopeful that I could avoid really bad sun issues the following summer. I purchased sun protective clothing, avoiding going outside in the daytime, and purchased SunGuard to add to my laundry. Of course I had been using sunscreen--it didn't help but I never stopped using it. Anyways...at the end of July, someone gave me a sample of Ganoderma coffee & was telling me about all the benefits of gano. I didn't disclose that I had Lupus, but just took the sample and came home and did my research. I googled Ganoderma and there is so much research out there showing that its been proven to suppress cancer & has long been a Lupus treatment in China. This confused me because i'd never heard of it at all. But the research was formal (on the US gov't website), so I went ahead and ordered the Ganoderma Green Tea bags...I started drinking the tea in early August. I also had a doc appt in early Aug (the 10th to be exact)...at that appt, I asked the doctor about these rash because the marks didn't seem to be clearing up at all & they had been there since April. She told me that because of how deep the rash is beneath my skin, I should expect it to take a long time for the darker marks to disappear. She said that if I cant any new rash while its red, I can prevent them from getting as bad by applying the steriod cream...but basically I was going to have to wait (possibly years) for my body to turnover all the cells in the older darker spots. Needless to say I was disappointed/discouraged. Fast-forward a week...I thought I was going crazy because I noticed that the rash was fading a little. So I started doing more research on the Gano. I found more and more research about Ganoderma and Lupus. I even found a girl that had a blog about her experience with Gano... Fast-forward another week--I firmly believe that Ganoderma is like some kind of miracle herb...I know i'm not paranoid because I can see that my skin is definitely getting clearer. I want to know if anyone else has had experiences with Gano (sorry this was so long). I started crying this morning when I woke up and say how much my skin had changed after just a few weeks...I feel its my duty to share with other people that suffer from the same condition as I do.

]]> Marijuana http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9629 2010-08-23T13:49:15 -05.00 Val10 6 I woke up yesterday morning and was flaring. I'm not too sure what caused the flare but throughout the day it got worse and soon I wasn't able to move too well and was in a lot of pain. My boyfriend who smokes marijuana came over and I told him what was going on and he told me I should smoke to see how it makes me feel, he told me I should feel better. I'm a curious person and I wanted to know if it would actually help me.

After we smoked, my the pain was more bearable, though not completly gone and my joints wern't as stiff and once the high wore off i noticed the pain and stiffness coming back. I guess I could say it did help a little bit.

Anyone else have any expericences with trying marijuana to see if it would help?

]]> Itchy hand rash http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9608 2010-08-22T01:16:34 -05.00 MOGGY 4 omg possibe long term cure for lupus!!! http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9599 2010-08-21T20:26:38 -05.00 dannie1615 9 I saw a documentry on how hook worms can supress the immune system to put allergies into remission, maybe this can work with lupus...I know that it is grose but for anyone out there with horrible lupus having worms in ur intistines may be wayyy better then dealing with the flare....here are a few links, read them and let me know what you think!

http://www.kuro5hin.org/story/2006/4/30/91945/8971

http://www.medicalnewstoday.com/articles/141010.php

]]> medrol dose pak http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9597 2010-08-21T13:53:53 -05.00 splinky 11 this is my second time taking a medrol pak and it's been weird. started the dose late on monday and didn't sleep a wink. was jittery all day on tuesday. felt energized on wednesday and thursday (got a ton of stuff done). slept most of friday (definitely felt like a crash) took last dose this am and feel kind of foggy and tired.

]]> Steroids and Lupus Nephritis....Need Advice!!! http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9587 2010-08-20T21:02:31 -05.00 CourtneyLeigh 19 I'm going to have a biopsy in a few days because I have been losing a good amount of protein in my urine.  For those of you who are being treated for nephritis/inflammation, are steroids mandatory with all classes of disease?  I'm preparing myself for what could potentially happen; however, I CAN NOT take steriods.  I took them for a few days recently and I almost had a stroke.  My vision blurred and my blood pressure was so high.....almost sent to the ER, but made it to the docs instead.  I was also extremenly manic (it is scary)....those side effects alone, I don't think my body can handle it again. Is there any other way nephritis can be treated?  

-Courtney 

]]> Methotrexate http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9586 2010-08-20T16:05:13 -05.00 DebraTX 12 How is Becky These Days? http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9583 2010-08-20T14:04:05 -05.00 clotsalot 9 Hey Becky,

We've heard from Matty, but not too much from you. I know you've had quite a time with this latest flare and I just wanted to send you a hello and a hug to let you know I'm thinking about you.

Hugs,

Jan

 

]]> Starting Plaquenil http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9571 2010-08-19T18:20:35 -05.00 imgonnabok 8 I will be starting Plaquenil tomorrow.  When I met with my rhumey, she said that I should go back on Clebrex (because I was doing well on it) and Plaquenil at the same time and then wean off the Clebrex in a few months.  I usually do poorly with new meds, so I am hoping that this will be an easy transition.  Wish me luck!  

Funny story:  I went in to my Rhumey.  She had a new doctor with her who met with me first.  Of course I have been an emotional wreck, so when I started talking I broke into tears right away.  As I cried I explained why I was there (first flare since my dx, ect. and that I was thinking that I did not have anything since I was well for two years)  She said, "Oh, there's nothing to be upset about, you have a chronic disease that you may have symptoms with for the rest of your life.  It won't go away, so don't cry."  With that I balled my eyes out!

]]> Meditation? http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9561 2010-08-18T19:35:49 -05.00 Jennifer 4 Does anybody use meditation to help relax, reduce pain etc? A nurse I work with suggested this to me today. I'm curious if anybody has done it with any success. Thanks

]]> question about cranberry pills http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9560 2010-08-18T17:30:03 -05.00 kodiak 6 I have been having bladder infections and I figured that it wouldn't hurt me to take cranberry juice and/or pills to support that system. I just read that I should not take any supplements that support immune function. My bottle of cranberry pills say that it supports immune systems. So, what's the real answer???

]]> Bump up on Methotrexate http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9517 2010-08-15T14:48:25 -05.00 Lupus444 5
So I took it yesterday and today I really feel weird... very dizzy...my heart feels funky (almost like weak), and so does my breathing... stomach is a little off like gurgling... I just feel....well YUCKY!

Could this just all be side effects because of the new dosing do you think? I just wouldn't think the extra 5mgs would matter that much.

PJ]]> predinsone weaned http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9515 2010-08-15T13:41:08 -05.00 bipolartony 3 Plaquenil http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9511 2010-08-14T20:26:23 -05.00 mimmey 13 I am quite scared about the side effects of plaquenil. 

I started the medication 5 days ago.  I have  increasingly become more tired and weak on the drug and it seems like my lupus symptoms are getting worse.  I am not sure if it's due to the stress of recently receiving the diagnosis or if I am truly experiencing side effects.  I know for sure my migraines are a result of the drug.  I notice that my arms and palms develop a pink rash.  I am not sure if it's my livedo reticularis or if I am having an allergic reaction. 

I've had such horrible experiences with doctors that I am afraid to rock the boat with this one.  I will call and leave a message regarding these symptoms but I'm scared.

I don't know what's up and down anymore. 

]]> my Rx so far http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9498 2010-08-13T05:17:49 -05.00 angelfromsa 8
Rheumy:
azathioprine 50mg
trepiline 10mg
citalopram 20mg
calcium 2500mg
vit D 50,000ug (once a week)
pain meds : doxyfene (2 3x day when necessary)
eltroxin 50ug

Gi:
omeprazole 40mg
(would also use azathioprine)

ENT:
lasix
nasal drops
nasal puffs
anti histimine
prednisone 40mg (taper in 3 days)
anti bio


usually i would also take a probiotic b/c of anti bio


(up until may i had only been taking OTC meds as little as possible and had no delusion that going back to docs would be any other way)

so YAY for meds and ick for the 16 i just swallowed for breakfast, i got another 3 for lunch and 10 for dinner to look forward too ???)

and i still have more speacialists to see and rheumy needs to add muscle relaxer, anti inflam, anti nausea,


of course my hubby and MIL are plain horrified at the amounts they give me

oh well, this is they way of the lupin NO?


]]> rash on legs and arm http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9492 2010-08-12T17:03:28 -05.00 megan2011 2 Hey everyone so i have a design looking looks like it wraps all around my legs and it starts at my knees goes to my feet and starts at my hands up to my elbows on my knees they get a purple/blue color to them my whole knee. The design on my legs and arms also have a purple color to them just not has bad at my knees..... Im a little lost on this one??? anyone know of anything or what can cause it?? hope to hear from you guys thanks again for everything and all the support!!    megs  GO BLUE

]]> Sleep Apnea http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9481 2010-08-11T22:13:18 -05.00 lindao 9 I have been dx with sleep apnea along with everything else.  I got my CPAP machine yesterday.  Does anyone else have this and what has been your experience - particularly as it applies to SLE / Sjogren?  Does the therapy help with the fatigue / brain fog?  My mouth got really dry last nite so I turned up the humidity for tonite.  Hope it helps. 

Any info is appreciated.

]]> Weaner ???s Imuran and Plaquinel ? http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9475 2010-08-11T17:36:22 -05.00 Grumpyone 7 Have a question about going off of Imuran.  Any weaner problems like with weaning off prednizone???   How about weaning off Plaquinel???  

I have heard some go off plaq every 10 mo for 2 mo??? is there a withdrawl or anything with any of these drugs??

 Thanks

Grumpy

]]> Rituxan re-visited http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9467 2010-08-11T08:28:41 -05.00 Lupus444 6
Thanks

PJ xo]]> Plaquenil Question http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9457 2010-08-10T19:15:54 -05.00 Kathryne 8 What does Plaquenil do to help with Lupus and how does it work? My doctor gave me a prescription and a flyer, but I'm still unclear.

]]> Neurontion http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9452 2010-08-10T11:33:52 -05.00 megan2011 20 hello everyone we had the lupus walk at woodhaven mi last sunday it was a blast!!! I have a question for everyone my doc want to put me on neurontion for the pain in my joints jaw hands lets just say Bengay at night from head to toe!! he he so if anyone is on this can u let me know if it works// how it makes u feel... or if anyone has anything to say about this drug please let me know thanks Megs!!!       GO BLUE!!!!

]]> Solumedrol/Rituxan for nephritis http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9433 2010-08-09T02:02:52 -05.00 katiu83 1 Hey everyone, I'm currently in a flare that has been going on for 1.5 years.  I'm on 3 grams a day of CellCept, and last week had 2 days of Solumedrol 500 mg/day.  This isn't my first trip to the solumedrol circus... I did the same kind of treatment last year except it didn't work and it was 1 gram a day for 3 days.  Has anyone else found that after Solumedrol treatments, they get extremely swollen all throughout their body?  I mean, swollen to the point where you're purple and the body hurts to the touch.  I also had a really horrific day of nausea... I mean, BAD, 2 days after the Solumedrol.  Wasn't sure if that was normal or if it was because of the CellCept as well.

Also, my doctors have talked about rituxan to try to get me out of this flare.  Although there's not much data on it for nephritis, I don't know what else we can do if the current treatments don't work.  I've done Cytoxan before... it pulled me out of a flare when my kidneys were leaking almost 8grams of protein.. Now I'm at 5 grams.  Don't really want to do Cytoxan again because of the infertility risk. 

Any insight would be appreciated.  1.5 years in a flare is too much for anyone to handle... I'm so tired... but positive and waiting for the day that I wake up feeling AMAZING and am in REMISSION!

Blessings to you all..

]]> Alternatives to Plaquenil http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9432 2010-08-09T01:12:00 -05.00 Andromeda 15 Gerson therapy??? http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9426 2010-08-08T16:38:12 -05.00 Sandra12 2 Has anyone heard of or tried the Gerson Therapy for lupus?

]]> doctors in so cal http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9390 2010-08-06T03:45:34 -05.00 sisdukes 9 I live in southern cali and go to Dr Hallegua in Beverly Hills out of cedars.  I am just curious if there is anyone else in my area that may see him and or see some one else and what their experience with thier dr is.

I have been seeing Dr Hallegua since my dx back in May of 09.  He is a very nice man with great bed side manner, but sometimes I feel like he doesnt believe me when I tell him things that are going on with me weather it is pain or a new symptom.  I had to start Cellcept back in April of this year and was on it for 2  months and it made me very ill. I ended up in the hospital for heavy vomiting.  He then moved me on to Imuran which with in a few weeks put me right back in the hospital for the samething.  I feel that he is starting to look at me as a drug addict and that I keep going into the hospital just to get high.

I am a mother of a wonderful 3 year old son and the last place I want to be is in a hospital away from him and like everyone else on here any amount of stay in the hospital is no walk in the park.  No one wants to be there, but my dr seems to think that I do.

I am considering changing drs but also scared to have to go through everything with another dr to get things going right.  Any feed back from cali people and beyond would be appreciated

]]> choosing a dr http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9376 2010-08-05T07:45:10 -05.00 jeepannabell 6 Just wondering what some opinions are on wether or not your primary should be internal med?  Rigt now I have fp and she's always at a loss (still in the dx stage).  Would it help much to have an intenist or are they just as baffled by this disease?

]]> Quitting Plaquenil http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9375 2010-08-05T01:34:49 -05.00 Jennifer 11 I stopped taking it, I'm not sure how I will feel. I am 100% positive that all of the changes I am experiencing are from it..I hate that I am a crybaby, I was never a crier! My hair is still falling out, I'm still stiff and swollen and there are a few other things I'm sure it's the culprit for also...I am super frustrated, I'm going to look into some alternative or natural treatments for whatever it is I have...

]]> "medical" http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9368 2010-08-04T15:48:44 -05.00 SarinaRose 1 does anyone on here have medical marijuana? how well does it work for you? and do you still need to take your other meds? do your doctors approve? thanks~

]]> NSAIDS http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=9364 2010-08-04T09:59:12 -05.00 Lupus444 6
Is there anyone out there who is on Steroids and also takes an NSAID?

I know some of you take the Celebrex... but what is the reason for the warnings and concerns of taking an NSAID while on steroids and immunosuppressant drugs?

Aside from the risk of stomach bleeding I have also heard it increases your risk for heart attack...why and how?

Thanks
PJ]]>