Hello everyone. I am still not officially dx'd yet. I went to see my rheumie today to show him my new Raynaud's and also the joint pain I am having in fingers and toes.

All of my blood work is negative. Perfectly normal. He discussed this with another rheumie and they decided that something is defiantly going on they just don't know what yet.

Anyway, they want me to start on Prednisone to see how it helps. I have been on the short dose pack before but never for 30 days. They want me to take 10mg in the morning and 10 mg in the evening for the next month and then I am to come back into the office.

Is that a high dose of steroid? I am kind of afraid. I mean I want to feel better but I am a little nervous about this. What should I expect from it?

Thanks, deb

Hello debill,

Please don't be scared of taking prednisone for such a short time. It is not honestly a high dosage for the time you will be on it. The intended outcome is that your pain and inflammation will be dampened down, and when that occurs maybe you will not have to take it again. It is used in this way to control inflammation and honestly I personally feel that you should at least give it a try. Not a medical viewpoint as you know, but only my own. From experience of having SLE for over 30 years, and taking prednisone for all of this time.

When I was first taking it, I started on massively high doses, and now I maintain my own regime with them as and when I need help with my pain and inflammation. Honestly debill 20 mg per day is not a high dose to get you well. I know steroids have a bad press sometimes, but they do the job they are used for and think about feeling well again. Side effects are not likely to be anything to be concerned about on such a dose and for such a short time. When I was first diagnosed with SLE, there wasn't the choice of drugs there is now to treat it, but you will be given the benefit of having other treatments offered to you also.

The good thing about doing it in the way you are with the prednisone is that your symptoms will be greatly helped, and then if you need a small maintenance dose for a while in the future, you will really feel the benefits.

I obviously can't do anything other than say go for it. Honestly debill, without steroids I wouldn't be here.

Take care

goldenwings :angel:

Thankyou Goldenwings for your uplifting reply. Today was my first day of taking it. 10 mg in am and 10 in pm. When it was suspected that I had MS several years ago along with optic neuritis I was given IV solumedrol. It made my sugar go really high so I didn't get the full 4 day pulse of it. Just 3 days. It is now believed that I never had MS or optic neuritis at all but after having that weekend of IV I was pretty much symptom free for a whole year. Best year in 9 years.

I had a really good appt. with my rheumie yesterday. He dx'd me with Raynaud's disease and also took notice of my joint pain and swelling in my fingers and toes. Even when the raynauds is not occuring. My labs are still all negative but he ran them again yesterday. He said even though labs are not showing anything he is leaning towards an eventual dx of lupus or mixed connective tissue disease. I am okay with that. It's been a long 9 years of being sick on and off but this summer was the absolute worst.

I have sadly sunk into a deep depression along with anxiety. That was after my last appt. with a very rude rheumie who told me nothing was wrong with me cuz my labs were clean. I am slowly trying to dig myself out of this dark whole I am in. I am taking medicine for that now too and trying to keep busy and not dwell on what the future may hold. I am very thankful to finally be getting some kind of treatment even if it's only a trial to see if it helps.

He said that when I go back next month and if I have noticed an improvement he is considering putting me on plaqneul (sp?). He is very compassionte and he seems so frustrated that he hasn't been able to help.

Do you feel pretty well inbetween your dosages of steroids? I know the course of these autoimmune diseases are different for everyone but is there a way to tell if your going to get major organ involvment or do you just take it as it comes?

I have alot of neurological symptoms. Difficultly concentrating and sometimes driving and not knowing where I am. Does prednisone help with those symptoms too or just the inflammation? Sorry to throw so many questions out there but I don't know where else to turn too.

Thanks again for your kind response and I hope your doing well yourself.

deb

Hello again debill,

So glad to her that you have now got a good doctor. This is the most important thing, to be able to talk and be heard. For the doctor to actually be interested in you as a person and not a file number and want to know how you feel is such a big boost to us.

I take prednisone every day, as I said I have been taking it for over 30 years since I was a child, which was when I was diagnosed with SLE. At that time there weren't the choice of "main" drugs to take to control the symptoms so my illness was brought under control with steroids. These are the drugs my body responds to best, along with Methotrexate. I cannot take NSAID's so pain relief isn't an option for me in that way. I do have quite a lot of other medical problems, I also have a nerve and muscle wasting illness so I think the steroids in their own way help a little with that too. Plaquenil is a drug I don't personally take, although I have a lot of knowledg of it, but I do know lots of the people on here do take it, so they might have an input on their personal experience of this.

You yourself cannot "tell" if you are going to get organ involvement, but being under supervision with your doctors and having regular blood tests and so on will be the way in which absolutely everything is looked into. If, and only if, you were unfortunate enough to develop anything at all, with the correct care and attention, it can treated before it gets serious.

This leads me quite nicely into something I say to every lupus patient I speak to. If you have any problems, even if you think they are small, always and I mean always go to your doctor and discuss your concerns with him/her. There are a lot of times that we might have some problem and in our own minds think it is lupus related. This is not always the case. Lupus as you know mimics other things, so if you are not well and need to go to the doctor, make sure he/she does tests for other things that are not anything to do with lupus. I say this because I have just recently had something like this happen, and had I not pushed for more tests and so on, the outcome doesn't even bear thinking about. It turned out not to be lupus related so I was right to push and have it checked again for non-lupus connection.

I don't know whether your anxiety related problems started before or after your physical illness, but in many, many cases a chronic illness does go hand in hand with anxiety and depression and all of those horrid things that can happen to us. Again, hopefully you will get the right treatment for this. One of the best things to do is to carry on coming here. Everyone will be willing to listen and hear you, and be of as much help as they can.

If you neurological symptons are connectd with lupus, then yes I would say the effects of the steroids will be beneficial. It is sometimes termed as "lupus fog". It is not an organic thing i.e. doesn't mean your brain is going to mush physically, but we all do tend to have our moments of not remembering things, or speaking in a way that is gobbeldygook, lots of things like this which can make us quite alarmed at times. To know that others go through this though makes it feel in a way not so bad. Again, that is only a personal viewpoint. If indeed the symptoms are because of anxiety, stress or depression, then an anti-anxiety med will most probably do the trick. Again, only the doctor will be able to diagnose exactly what is causing these problems for you.

I hope this is helpful and please come back and feel that you can ask what you need to know. Emotional support is one of the best things to have I feel.

Take care.

goldenwings :angel:

Thanks again Goldenwings,

Your support has really helped. I was glad to see a post this morning. I took my first two dosages of Pred. yesterday and this morning I woke up with horrific stomach pain. Felt like someone was stabbing me in the gut. I take it with food so maybe this is just a side effect that will go away after my body adjusts to it.

I am so scared. No answers to any dx. I don't even know how to feel anymore. I have been posting on the anxiety and depression boards too and that has helped.

My anxiety and depression didn't start until about 1.5 months ago when an extremly inconsiderate rheumie treated me like garbage. I just felt something snap inside of me. Now the anxiety/depression is a constant battle. I wake up shaking all over every morning and I have to depend on pills to calm me down. I always thought I was a stronger person than this.

The fear of the unknown has really gotten me in a big way.

I know I must carry on and dig myself out of this and just pray that the prednisone works whether it is lupus or some other immune disorder.

Thank you again so much....you have really boosted me this morning.

deb

If you havent already and I missed it what kind of things did this goof ball Rhuemy say or do. I get the pleasure of meeting mine in late Oct. and like you am scared to death of what he may say or do. I have changed GPs due to the lack of knowing or wanting to admit I have serious problems. Not sure my new one will be any better. My blood work all indicates Lupus as well as the obvious signs. My hopes are very high they can Label me with a disorder so we can move forward to treatment. I have never handled meds well and my Nuero Dr put me on Gagapintin for my nervious system to calm it down. They gave several other downers such as pain meds and muscle relaxers but I need to function during the day so I cant take any of them. I have periphial nueropathy, and major arthritis in my back,neck,hands, and who knows where else. I have been in pain for years. I also went to 3 football games this week and am paying for it. Couldnt get out of bed most of yesterday. I am very sluggish yet today. My mind continues to jump and race. I find great relief right here on this message board. If for no other reason just to have someone understand what its like. I think Im safe in saying we ALL do care and feel your pain. No one else can begin to understand what we are going through.

The first rheumie took a look at my negative blood results and stood in front of me with his arms crossed and said there is nothing wrong with you. I can't help you.

Needless to say I had a nervous breakdown right after that. I goto a doctor who is a fellow to rheumotology and this is the guy he had to confer with about my problems.

Since my joint pain and everything else increased since my last appt. about 2 months ago I made a new appt. at a teaching hosp. on Philly but it's not until November. I thought I better have this looked at so I called the Dr. who is a fellow back and he had me come in the next day. I told him what happened to me after I left my last appt. and he told me he was mortified how that doctor treated me. At this appt. he had another rheumie come in and confer over my problems. They both agreed something is really going on they just don't know what yet. That's why I am on this trial of Prednisone for 30 days to see if it helps.

Some doctors just don't care and it's a difficult battle to find one that does. I have been having symptoms for over 9 years now. This last year has been the worst so far. I have been told possible lupus, MS, and Lyme disease. It's just a big confusing mess. I am hoping the steroids will push me into a direction that maybe will give them some clues.

I hope you have luck with your doctors. Your right about these message boards. I would be lost without them. No one understands unless they are facing it. My fears have taken a strong hold on me. Please don't do that to yourself. This worrying and depression is worse than any of my other symptoms.

Take care and let me know how you make out.

deb

Deb, after posting my reply to you earlier today I called my Mother who is totaly incapacitated with MS and and had a good cry with her. I recently placed her in a nursing home due to the fact that I need to slow down myself.I have cared for her the last 5 years every evening on top of staying as involved with my 15 yr old son as possible. I also have a full time job that I work 6 days a week most of the time.My Mom is not getting the care she is paying for so it looks like she will be returning home soon to live her last few days, months or years without my help.I am sick for her she deserves much more but I am not able to do it and have 1 sister and 1 brother that wont. 1 brother lives with her and cooks and cleans will empty her cathater but cant bath her or change her diaper.She will have a hired hand in the mornings but thats the extent of her care. Thats still more than she is getting at the nursing home. My call to her was about outsiders (people who dont know what its like) I now understand it all. Looking back on when she was 1st Dx I like everyone thought there was more she could do. I told her how very sorry I was for being like everyone else. My Mom is my hero and I love her very much.None of ask for this stuff, I hope you can find the straigth to pull yourself out of fright. Having a good Dr should help. Educate yourself also,I have found so many people on this board to draw straigth from, theres enough for you too.

I just thought I would jump in here. Believe me I know how scarry it is not to know what is going on with your body. I have had the same experience for the past year. I knew something was terribly wrong yet test after test was normal. 4 MRI's 2 spinal taps ( with the neuro) and then the pages and pages of test by the rheumi. All normal till a few months ago when an antibody Anti Ro/SSA popped on my blood work. While this doesn't diagnose anything, it does at least say FINALLY to them that my body is indeed attacking itself or at the least out of whack somehow. That alone was a bit of a relief. I have had 4 bouts of Optic Neuritis and then not to mention not being able walk. The very idea this could be caused by my own warped mind literally scared the bejesus out of me. Now I have kidney involvement. We only know SOMETHING is wrong with them...again not what yet. My Urinalysis was pretty bad. High numbers of White blood cells. Moderate blood and 10 of protein (whatever that means) They just said it is high. Now my blood work that would indicate my kidneys were going bad show that all is ok. So hopefully they are catching it in time and all will work out. If that wasnt bad enough they did a CT scan. The report shows 2 cysts on my liver and a mass on my left ovary. (which I am going with it being a benign cyst as they are quite common and dealing with the kidney problem at hand)

I am going to the rheumi tomorrow regarding my new kidney problems or atleast that we now know it is absolutely not due to kidney infection as we thought (negative culture)

All of this time this past year, it has really bothered me that I have felt so bad, yet I couldn't put a name to it. Just that I hurt all over or I cant walk or cant see. Someone would say what is wrong with you and all I could answer was "Oh......nuthin" I guess after all of this year, it finally hit me. I dont need a name to put to it. Just take it one day at a time. Deal with what comes and quit worrying about what the name is. The fact is the more I thought about it, the problem with the name is it is IN INK on your medical record. Forever a pre-existing condition. Since I have no intention of filing for SSI disability, no name works fine for me. Atleast they (the numerous "ologists") are finally standing up and taking notice that I am not making this up!! I have always been very in tune with my body. I know when something isn't right! Usually long before it is confirmed by test.

It is very frustrating, being in limboland. Believe me I understand, but I decided that I will sit back relax a little and hope for the best.

Now that being said, check back with me next week. I will probably be ticked off all over again.... thus the cycle of limbo land!!!

Erin
Dallas TX

NCWHS,

I am very sorry to hear of your mom being so unwell. It has to be terrible pain for you to watch her go through that. She is lucky to have you loving her so much.

I am trying very hard to pull myself out of this constant stage of being scared but I am finding it to be very difficult. Thankyou for you kind words and I will pray for your moms health.

Estevens64,

I am right here in limbo with you. I hope your doctor appt. goes well. I will check this thread tommorow. I hope you will post and let us know.

I too have gone through all the tests...3 spinal taps, 4 MRI's, 1 MRA, tons and tons of blood work. All showing really nothing. BUT...I know there is something wrong and it has taken me 9 years to get a doctor to believe me. Through those 9 years they kept saying I must be depressed or something. Well, thanks to them I now am. It was them who pushed me over the edge.

Are you getting treatment for anything? I am glad to find a doc who is actually trying medications to see if I respond to them. He did say I definetly have raynaud's. Which I already knew. That doesn't account for all my many other symptoms though. So I guess the raynaud's must be secondary to something.

Good luck at your appt. and I hope we get out of limbo soon.

deb

debill, I am so glad goldenwings gave you the insiders info on the prednisone. I ask the knowledgable people on this board when I started on it about 3mos. ago. I started on a lower dose, 5mgs a day and believe me it helped A LOT! I have now been reduced to 4mgs. a day because my rhuemie says the side effects will be non-existant (I hope ) taking under 5mgs. and I can be on it forever. I have to say the 5mgs. worked better, but I was in so much joint pain at the time I think anything would have felt better.

I, like you and many others, don't have the diagnosis yet of anything wrong, and I thought and still think as long as my symptoms are taken seriously and treated I can live with that. But....somewhere in the back of my head common sense tells me if I am in pain there has to be a reason, and there has to be a reason for this overwhelming fatigue and all the other little things that keep happening. So I have made an appt. with another rhuematologist to see what she will say.

My bloodwork was not normal in 2003 when my gp sent me to the rhuemie, but as soon as I started on meds (plaquenil first, then methotrexate) the bloodwork went to normal. So here I sit in limbo land with all of you.

I too have had the problem of looking fine but feeling awful and not having people believe you are sick. But at my age, I don't really care what people or the docs think if I don't feel exactly well I go to my gp and say "it hurts here, find out why." My grandmother and my mother died at 54 and 45 yrs. of age from doctor neglect I call it. Womens health issues were not a priority in 1957 and 1972, they should have been then, and I will make sure mine are now.

Just keep hanging in there and when you need a lift come here and talk to us. I hope the prednisone will help you to feel better soon. You know I actually got a little 'giddy' after about four days on the 5mgs. I think it was because I was feeling better and the pain was almost gone. I hope the prednisone gives you a lift.

Glojer

Well, my appt went pretty well. I really like my rheumi. He actually listens to me. It helps that I brought all of my paperwork from the urologist and my GP which clearly indicate I have had kidney issues and fever and high BP. Because ofcourse my BP was fine today and no fever but that usually doesnt get going till the afternoon. But after examining my joints and my face (It is the malar rash on my face) I wasnt sure because it is more on my nose than my cheeks but he said it is for sure. He put down on my chart malar rash and polyarthralgia whatever that is. I assume his is talking about my joint pain and swelling. He put me on prednisone 40 mg for 4 days, then 30 for 4, then 20 for 4, then 10mg a day from then on. He said I am very close to being diagnosed. He is wanting to see what my urinalysis tells me. He said if there is still protein I will have to go to a nephrologist. I am to go back in 2 weeks. He said the prednisone may not help and then it might, he is just hoping it will help a little. I am also suppose to go do the IVIG therapy too.

To be honest I was really relieved to be getting pills. Everytime I have been told I was getting steroids it was always IV steroids. So the pills are a welcome change.

I told him that I dont care about a diagnosis, I just need a break really bad. I am so tired and in pain. Something has to give! He told me he wont give up till I get the help I need. That I have been doing my part and doing the "ologist" round and that it is about to finally start giving some results. He also said that sometimes they get a patient in and suspect lupus strongly but they dont want to worry or put thoughts in the patient. It is funny, he told me the very first time he met me he suspected I had lupus. Even though I wasnt symptomatic in my opinion. I truly thought it was MS since all of my symptoms at that point were indicative of MS. But he said that with my family history, he felt that it was going to be SLE, which is why he insisted on continuing my f/u. He said he also still thinks that MS will continue to be a possibility for me or atleast a neurological feature to the SLE as in Devic's or TM. Which is why he wants me to continue the IVIG therapy.

BTW, does anyone else get back aches alot??

Erin
Dallas

Erin,
Thank God things went well for you.It has to be such a relief getting some satisfaction. Im fairly new here, what is IVIG? I have tons of back problems but have been told its 3 buldging disks and arthritis in several places in my spine. I only hope my new Rhuemy will be as considerate as yours. Im trying to prepare its very hard to pinpoint my symptoms because I have been sick and in pain forever. I chose to ignore most of it after first one then another of the ologists told me there was nothing wrong or sent me to another.I just layed around sick with my family thinking I was NUTS.Im not sure I blamed them as all the (HA HA Professionals) said I was fine. I found a wonderful Neuro Dr who has done more for me than in 2 app. than the rest ever did.

Erin so happy for you that your appt. went well. Polyarthralgia is what my gp kept calling what my aches and pains are. So glad you have a plan of action to follow, it sounds as though this rhuemie was the kind that can actually have a conversation with patients and give them info even if it isn't answeres.

Erin,
Thank God things went well for you.It has to be such a relief getting some satisfaction. Im fairly new here, what is IVIG? .

IVIG is IV Immunglobulin, it is for my recurrent Optic Neuritis and possible TM (the occassions of not being able to walk I was talking about) I have had 4 bouts of it and the IVIG is to stablize my immune system and stop it from attacking. Not that it has been working!

Erin
Dallas

Dear Erin, Your rheumie appt. sounds as though it went really well---good news! I hope follow-up goes well & that you get some true relief from the Prednisone Rx in the meantime.

Interesting how this new rheumie came right out and gave you lupus as his first "bet", which probably means he believes in his own observational & diagnostic skills---instead of holding his cards so close to his vest that you never even get to see them, let alone critique them. Good for him---and you for finding him.

I got backaches & sciatica a lot in the 15 yrs. prior to Dx. Nothing showed on X-rays & other tests. Couldn't have been weight-related (I'm small). Yet my problems all but stopped within weeks of starting Plaquenil, which kinda makes one wonder...

Anyway, I'm really glad for you that you had a "VOILA appointment" & turned one important corner. Take good care. Bye for now, Vee

Vee, First of all, this is the very same Rheumi. This will have been my 3rd appt with him. But it is funny, I actually argued with him on my second visit that I had no reason to continue testing. I didnt believe I had lupus due to the extreme difference between my sister's symptoms and mine. She has had it for 10 years now and still no kidney involvment. She also never had the molar rash, which is why I didnt really recognize it as such. Mine isnt beet red and blistered as I had seen in the photos. But apparantly that is the worst case scenario for it. He INSISTED that I test again. So I guess what he said yesterday explains why he was so insistant.

I like that he was upfront with me. I also like that he got I was the type of patient that needed that. I needed him to shoot straight with me. I am not going to fall down tomorrow because of lupus or the possibility of it. I will continue as I have this past year. Taking every day one day at a time and not planning ANYTHING ahead. Get the best I can out of each day and take the bad ones as they come. However hard that might be sometimes. Truly, the worst of it is the fatigue. The body aches suck but the fatigue really kicks my but. But I am sure, I dont have to tell anyone here that. I think most of us can agree, it is the worst part of it. Even on good days, that is still with you.

He also explained that there were 3 types of SLE. Chronic active, Relapsing remitting and long remitting. So even if I have it, maybe it will be the latter. After a year of facing MS and now this, you just get to the point where you dont really care what it is as long as they get to finding out which one and treat it so there is some relief.

I did have a bit more energy today. I dont know if it was due to the prednisone or not since it I usually dont really struggle hard till thursday. By Thursday I am really having a hard time. Between work and kids and all the extra activities that come with them I just wear out I think.

But I will hope and I go back in two weeks and find out what the test show. Does anyone else ever feel like your body is like your car? Your car is messing up and you feel it and know it. Yet you take it to the mechanic and it isnt doing what it does to you. So they tell you there isnt anything wrong with it. Only to have it break down on you AGAIN on the way home!!!! HaHa.

Erin
Dallas

Hello everyone. I am still not officially dx'd yet. I went to see my rheumie today to show him my new Raynaud's and also the joint pain I am having in fingers and toes.

All of my blood work is negative. Perfectly normal. He discussed this with another rheumie and they decided that something is defiantly going on they just don't know what yet.

Anyway, they want me to start on Prednisone to see how it helps. I have been on the short dose pack before but never for 30 days. They want me to take 10mg in the morning and 10 mg in the evening for the next month and then I am to come back into the office.

Is that a high dose of steroid? I am kind of afraid. I mean I want to feel better but I am a little nervous about this. What should I expect from it?

Thanks, deb

Hello Erin,

Love the analogy re the car hee hee !! One thing though when you said that your sister's symptoms weren't the same as yours. Not all symptoms are the same with each of us. Also not all lupus patients have kidney involvement. Those of us with SLE are in the category to get kidney involvement, but even then it is not a given that we will. With the proper care and attention and regular blood tests, a lot of problems can be caught early on and treated.

This leads me into my famous bit hee hee !! Never ever give up on asking questions. Don't let your doctor say that a sympton you may have, whatever problem it is causing you, is a definite lupus symptom. Always push and get it checked out. In a lot of cases, mine being one of them, things can be left because the lupus name was attached to it, and it was not lupus related at all. Had I not insisted that I knew something else was going on, then I would not be here for much longer. Always ask questions and push for answers. Only you know your own body and how it feels on any given day.

Wow, off my soapbox now hee hee !! I have a more permanent type of malar rash, in that I mean that I have a hint of it most of the time. When I am having a bad flare it is more pronounced. Also I do have blisters on my face at times - as I have at the moment - but not in the specific area that the rash lives. I have had the butterfly rash since I was a child, and frequently was told that I looked too well to be wanting to go out of class at school. The redness on the area of my cheeks and nose was seen by my teachers as a sign of my being rosy cheeked and well. Never mind I was also collapsing on the sports field. Wrong ! Thank goodness for my parents taking me out of school and into hospital.

This is why a definite diagnosis of a malar/butterfly rash can also take time. Is it just high colour, or is it because we have over exerted ourselves? Lots of questions to be asked and answered to reach a decision. I can only hazard a guess at how it must feel to wait for a long time for a diagnosis for anyone. When you think about it though, the doctors have to be so careful that they don't misdiagnose you and put you on heaps of medications. This in the end would do you more harm than good if and when they found out they did in fact rush into giving you a name for your illness, and in doing so got it wrong.

I have had SLE for over 30 years, and honestly I must say this is the first time I have heard of it being given 3 categories before diagnosis. Mmm, interesting. If you do have SLE, then after diagnosis the correct medications and treatment regime for you personally will hopefully ease your symptoms, control the inflammation and give you pain relief and then you will be able to carry live your life to the full as best you can. I personally have never heard of it being referred to as 3 classes of SLE for diagnostic purposes.

When any type of lupus is first diagnosed, the medications can be juggled about until your regime is good for you. This along with various treatments can be used to suit you and hopefully in time can lead to on/off remission of symptoms and also in some cases long lasting remission. Having said that Erin, I do so agree wholeheartedly with you, whatever the outcome of all of the tests are, as long as you have a diagnosis and have the appropriate treatment and care, that is all that matters.

I do so admire your positive attitude Erin, you are a tonic. Take care and I hope to speak to you again soon.

Wow, I only came only to say hello you Erin and the rest of my wonderful friends here. :wave:

goldenwings :angel:

Goldenwings, I cant remember if he said classes or types of SLE but he did say there were three. You could probably talk to 5 Doctors and get 5 answers.

My rash stays always, just lighter but it never gets beet red like I have seen but it is usually what I call rosey with bumps. Mainly on the sides of my nose. The prednisone is helping with the fatigue alot. That is the worst part. I have a pretty high pain tolerance but when you are whiped out it makes it so much harder.

They called today, they got my urinalsis results. He said they were borderline. I had the white blood cells, red cells and casts but only a trace of protein. He wants to do a 24 hour test in two weeks to get a more accurate picture. So far my simple blood work looks good, but I expected that. It has always done so. But my other more extensive work hasnt come in yet.

We shall see, but thank goodness I do feel a bit better. Now I am off to watch my daughter's basketball practice! I cant wait, I have really missed that.

Erin
Dallas

I went back for my follow up today. He had me on 40mg a day of prednisone and it helped but then he tapered it down 10mg every 4 days till I was at 10mg. Then I crashed. Friday I couldnt walk again and I had the worst weekend I have ever had. I was actually praying for the numbness to come back. I went back to see him on Monday and he said "what happened??" We talked some more. He has me back on a sustained dose of 40mg a day and I have to get my IVIG therapy asap. He also mentioned chemo drugs??? what is that? this was a new one for me. He said it might be the next step. We still dont have my lupus panel back yet and he ordered some more standard tests, CBC and such. He said my malar rash is still there as well as my fever. My bp was 149/92. Before this started it was only 110/70 like clockwork. On top of that I think my optic neuritis is back. He said I need to get back to the neurologist soon. What really worried me was I got lost going to his office. I have had issues with remembering words...simple ones that I know i know. (it makes me crazy) I only work a few blocks from him and have been there quite a few times. I couldnt for the life of me remember the building. I circled and circled till I found it. My walking was so bad he wanted to put me in a wheel chair. I did get a cane though. I had put it off but I guess it is time. I just couldnt believe how fast the neurological symptoms returned. I looked up some stuff, VEE this should be interesting for you. The RO SSA also tend to be involved in the Optic Neuritis and Transverse Myelitis part. The devic's they suspected for me even mention that the RO SSA was found in a large number of sufferers. The odd part is that it is also associated with skin problems, which I really dont have. it is also associated with Sjogrens, but I dont have dry eyes. I have never used or felt the need to use eye drops in my life. my mouth gets dry and my throat but not extremely. The joints were really bad. especially my shoulders...they hurt so bad they burned and my ribs felt like I had bruised them or had a vise around them.

I told him how can we treat it when we dont even have a name to put to it. He said, we dont have to have a name to know we have an autoimmune disease doing a number on you! okay, this I will agree. I never thought I would be thankful for a single antibody to pop on a test. It seems to have finally said to them "hey, she isnt making this stuff up!" I think it rattled him a bit to see how bad my legs actually do get. My GP and my neurologist have seen it for themselves but he hasnt. Usually he has only seen the milder side of it. The first time he said it was fibro probably. I didnt see it myself. And when i read about TM I definately saw the resemblance. I could really relate. I have a milder case for sure but the part where it hurts to even touch me is absolutely the case. This is when i pray for the numbness to come back.

Have any of you ever had this type of attack. This is my 5 one in a year. They last about a week thank god. Then it stablizes and recurs again and slowly gets better. Then usually it is back again in a few months. I actually had a good run for a while. about 4 months. I actually had hoped that it had gone. No such luck.

Now they want yet another MRI, I should have stock in American Radiology for as many as I have had. Possibly another spinal tap. (not looking forward to that again)

Somedays, I am just amazed. a little over a year ago I had a normal life. and then WHAM it went down hill fast. I keep telling myself that it will get better and it does..but only for a short time.

So I am back on the 40mg a day of prednisone and for the duration till I go back in 2 weeks. Is is normal to have to keep coming back every 2 weeks? So far he has been pretty forthcoming. But to be honest in this last appointment he seemed to be more concerned and wasnt as forthcoming. I know he is aware that I have CNS issues and has from the beginning. He is a good doctor and I am going to Baylor Hospital. I think he realises that I am someone that needs to KNOW what is going on...what is suspected...but as I said...I now do feel he is holding back ..something...I just couldnt put my finger on it.

Has anyone had to do the chemo drugs? are they pills or IV? He even said it would have to be in conjunction with my IVIG. That is alot of IV drugs isnt it? I am really trying to remain calm and take it one day at a time, but to be honest... I am starting to get a bit scared. I have even went to a lawyer to set up my will...mainly to make sure my kids are okay. I have a 6 year old and while I dont intend to go anywhere anytime soon. Lets face it 12 years is a long time.

At this point any advise would be welcome. If you remember the metaphore I used in an earlier post about taking the car to the mechanic. I think he finally got the picture of the problems I have been facing all along and why lupus was really not in the forfront of my mind. heck my ct scan even showed a mass on my left ovary and a few cysts on my liver. He said that it isnt our first concern. That our first concern is to get this under control and pretty fast. He also mentioned plasma exchange as a possible alternative. Hopefully when My other panels come back he will get a better picture but to be honest I have lost all hope that my blood work will give any indication. It all moves so slowly. If my blood is causing all of this, why do the symptoms come before it shows up. I have knowns since last year something was wrong yet on paper I was healthy as a horse. go figure.

I am just very glad I work for an understanding company and a job where I am not walking around. They have even gotten me some help to do the running around for me.

My boss said that the one thing that makes them work with me the most is that every day I come in with a smile. (well most days, I wasnt smiling much on friday) I am really happy to be there and it takes my mind off of things. It also helps that we laugh. Laughter is my best medicine.

Please let me know about the chemo drugs. I would really appreciate knowing in advance what they are talking about. Is 40 mg a day for this long a stong dose....lol am I going to grow a beard???

Well I am off to bed...please reply. and Vee..check out what I was talking about Anti Ro SSA and recurrent ON and TM.

Erin
Dallas

ps: sorry it is so long and my spelling is so bad. I am a bit out of it tonight. Serious brain fog.