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New Diagnosis 8 years 7 months ago #33846

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Oh yeah, he took enough pain meds to kill a large horse. I couldn't believe they would prescribe all of that for one person. Or that he could walk and talk at all.

Glad you stopped in, Nate. I've been thinking about you!

Rituxan isn't all that successful for Lupus, according to studies. Benlysta has a much better track record.

It's a shame that you have to fall off of a ladder for the doctor to know you're in trouble. It's also great that they are holding your job for you if you are ever able to go back! I've been off for 8 months and have not been depressed at all. Relief is the word to describe how I feel. I get sad when I see everyone on FB have normal lives and do things all the time, but I was sad about that when I worked too, so being off didn't change anything. I have to take pictures at a family reunion next week which I committed to months ago. I am worried sick that I won't be able to get through it. Having plans only stresses me out.

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New Diagnosis 8 years 7 months ago #33852

  • DanC33
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It sounds like he was a human lab rat. I'm starting to know how he must have felt.

It is nuts that we have to get to that point before somebody listens. But at least they eventually did listen. Right now it's hard for me to be at home and not work. I've worked steadily for almost 30 years and a lot of that was doing some pretty extreme jobs like climbing wind turbines. I used to be able to run a 6 minute mile now it takes me that long to get to the car in the driveway! But yes there is some relief from not having to work so I can focus on getting well.(and my wife can stop worrying about me falling again) So I completely understand your trepidation about taking pictures at a family reunion much less just going.

The Rituxan was for the ITP before I was diagnosed with Lupus, my current Rheumatologist says that Rituxan can help some people with Lupus but it usually doesn't. It has something to do with B cells I think he said.

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New Diagnosis 8 years 7 months ago #33856

  • Inspire
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Narcotic tolerance is crazy like that! I was a bit of a lab rat every step of the way but that is because Lupus is such a unique illness. My rheuma even told me that Lupus is more of a syndrome than a disease because every case is unique in every facet. I also struggled with work and illness. I had to leave my job and go on COBRA, then I took another job and couldn't work it barely, then I got a little better and took another new job which I immediately got sick before my first month was up. They fortunately trusted I was not a flake...I did have kidney failure labs and notes from the doctor to prove things but I was a brand new hire that they could have fired. I told them I was a complete work-a-holic before I got sick.
My company is now seeing that I was always telling the truth and I am a bit of a work-a-holic as I've worked over 130hours of overtime this year already. Look into Benlysta more I would say and also look into your diagnosis if you don't feel you have been fully investigated. A lot of diseases can look like Lupus. They went through a whole lot of guesses with me before we stuck with Lupus.
I was also very known for being a very stubborn patient and it is because I am medically trained as well as I know if I don't do the research and make the decisions I will regret things. Doctors actually LIKE when patients take charge and ask questions, say no, and really make an educated and mutual decision because it takes the liability off them actually and doctors don't know everything and are not perfect. I trust myself and my instincts and my research. I have not regretted pretty much a single thing on my path to better health and it got me here! I still worry how long will this last, but I know if it doesn't I will still be just as stubborn and driven.

And by the way...doctors say "it doesn't work for most people" all the freakin' time! Don't think about most people. You have to try it and figure out if it works for YOU. Don't let them talk you out of a chance to be healthier just because they're being pessimistic.
08/29/07 Lupus Diagnosed, 2005 History ITP treated with Rituxan
Current Tx: Benlysta infusion every 4 weeks ongoing since April 2011, Plaquenil, and Vicodin 10/325mg PRN, Ambien 5mg PRN.

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New Diagnosis 8 years 7 months ago #33857

  • Inspire
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By the way Benlysta treats the problems with the B-Cells if you read about how Benlysta works sometime or if you already have. Rituxan works by eliminating some of the B-Cells in your body if I remember correctly, which in turns helps chill out the Lupus.


"Rituxan works by targeting specific B-cells and reducing their count in the blood. This limits the immune system's attack."

Benlysta: "In people with lupus, certain white blood cells called autoreactive B cells (cells that react against the body) stay in the body longer than they should. One of the important proteins for the growth of these B cells is called B-lymphocyte stimulator, or BLyS. BENLYSTA binds to BLyS and prevents it from stimulating B cells. Adding BENLYSTA to your other lupus treatments may help reduce the abnormal immune system activity that contributes to disease activity in lupus."

This is why I find Rituxan worked for me and why I was so sure Benlysta would work for me. So your doctor was partially wrong in that Rituxan kills off those aggressive B-Cells, but Benlysta takes things a step further and disarms B-Cells that cause autoimmune attacks. And the fact that Benlysta can be given so frequently it keeps the B-Cells in check. Rituxan is only safe so often because it simply annihilates B-Cells and Benlysta instead lets those B-Cells stick around, but prevents the activation against the body instead.

And remember to try and now see ITP as a symptom of Lupus. If the Rituxan worked for your ITP symptom, then in a way it was helping with your Lupus on a cellular level. My doctor also feels my Low WBCs may have been a sign of my Lupus as well because my body was activating against my WBCs in some way as well or exhausting my WBCs to attack my own body.
08/29/07 Lupus Diagnosed, 2005 History ITP treated with Rituxan
Current Tx: Benlysta infusion every 4 weeks ongoing since April 2011, Plaquenil, and Vicodin 10/325mg PRN, Ambien 5mg PRN.
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New Diagnosis 8 years 7 months ago #33896

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My Rheumatologist won't prescribe anything right now. We did talk about a lot of meds but until I can get into the other specialists he's not doing anything more. But I will ask about Benlysta at my next appointment. Right now I am willing to try ANYTHING to get back some sort of normalcy.

Nate so you don't have to go through all the posts, here's a list of what I'm on right now:
Cellcept 1000mg Planquinil 400mg Medrol 16mg Allopurinol 300mg Levothyroxine 88mcg Lisinopril 20mg Prilosec 20mg Tramadol 50mg as supplements Calcium 1200mg D3 2000iu Flaxseed 750mg and a multivitamin . ( Sandi I know multi vitamins are junk but I'm finishing the bottles.)

Do any of these counteract each other? Intensify side affects ? I'm asking because I had a couple of seizures yesterday :angry: ( I use to have them a lot in my teens and early twenties) Or could they be brining old symptoms back ?

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New Diagnosis 8 years 7 months ago #33902

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I know that Calcium shouldn't be taken around the same time as other meds. Same with the Prilosec. They can absorb the other meds and make them less potent.

Wow - what sort of seizures? Grand mal?

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New Diagnosis 8 years 7 months ago #33903

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I'm not sure, I just get very tense, my arms and legs will not move my hands were shaking real bad and teeth clench. Afterward I am very disoriented and dizzy for about 1/2 hour then back to normal. The first one lasted a couple of minutes and the second about 30 seconds. But like I said I use to have all the time when I was younger. I did go to a Doctor for this 30 years ago and just said that I am having severe muscle spasms.

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New Diagnosis 8 years 7 months ago #33919

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Are you aware and lucid while it's going on?

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New Diagnosis 8 years 7 months ago #33949

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I just got out of the ER, I had another seizure this time it was real bad. My son said that I was trembling real bad and I was convulsing and mumbling , I did lose awareness for about 15 minutes and I was very disoriented for about 3 hours. The ER doc said that it was a Grand Mal seizure but had no idea what caused it, he said that it was a non epileptic seizure.

From the one the other day I did lose about 2 minutes of awareness but that was it.

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New Diagnosis 8 years 7 months ago #33950

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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You should try to get that Neurologist appointment bumped up. I would think a Grand Mal seizure should qualify for getting in faster. Sorry to hear about the new symptom.

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New Diagnosis 8 years 7 months ago #33965

  • Inspire
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I'm sorry to hear about the seizures :( Cellcept can cause seizures as a sideeffect. You weren't in a prednisone withdrawal right? The jaw clenching tense seizure sounds like a tonic seizure. Grand mal seizures should get you seen immediately.
08/29/07 Lupus Diagnosed, 2005 History ITP treated with Rituxan
Current Tx: Benlysta infusion every 4 weeks ongoing since April 2011, Plaquenil, and Vicodin 10/325mg PRN, Ambien 5mg PRN.

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New Diagnosis 8 years 7 months ago #33967

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I just saw my regular doctor as a follow up. She said that she is going to call the Neurologist and try to get me bumped up. I am still taking the same dose of Medrol so I don't think it's that but I do know that it can cause all sorts of side affects.

And because here in Nevada the Doctors here are required to suspend your drivers license whenever they report any kind of seizure, neuropathy or neurological issues so now I am no longer allowed to drive. :angry: But I did get approved for a disabled placard so I never have to worry about where to park. :lol:

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New Diagnosis 8 years 7 months ago #33995

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Sorry, Dan. I hope things get better for you soon.
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New Diagnosis 8 years 7 months ago #34008

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I'm sure they will. But at least my doctors said they are going to help me start the SSDI process because I now have to walk with a cane because my legs have progressively gotten weaker. And the tremors in my hands have become so bad that I can no longer write anything legibly. It even takes me awhile to type stuff. But I'm still going to continue living each day to the best of my abilities and not bury my head in the sand.

Also the ER doc put me on Valium 5mg every 6 hours.

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New Diagnosis 8 years 7 months ago #34093

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Hey Dan - how are you doing?

Has anyone looked into the possibility of one of your meds causing these problems?

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New Diagnosis 8 years 7 months ago #34139

  • Inspire
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I'm sure it is always on your mind but your leg and hand issues really put my medical training on alert...have they ran tests on your nerves, neurons, and myelin sheaths that surround your nerves?
www.alsa.org/about-als/symptoms.html
08/29/07 Lupus Diagnosed, 2005 History ITP treated with Rituxan
Current Tx: Benlysta infusion every 4 weeks ongoing since April 2011, Plaquenil, and Vicodin 10/325mg PRN, Ambien 5mg PRN.
The following user(s) said Thank You: DanC33

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New Diagnosis 8 years 6 months ago #34140

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I briefly asked my rheuma what his mind would jump to with some of what I've read in a generalized convo I didnt mention you specifically and he said he would look into upper motor neurons, microscopic clots and see a neurologist as soon as possible and run more tests and second opinion but didn't jump to ALS which is on my mind since my Uncle is currently dealing with ALS.
I'm getting Benlysta today so was convenient to ask.
08/29/07 Lupus Diagnosed, 2005 History ITP treated with Rituxan
Current Tx: Benlysta infusion every 4 weeks ongoing since April 2011, Plaquenil, and Vicodin 10/325mg PRN, Ambien 5mg PRN.
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New Diagnosis 8 years 6 months ago #34193

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Just got out of the hospital again for the seizures. All they said after 3 days was that they are pseudo seizures of a non epileptic origin. They ran a cbc and a chem panel and they were supposed to run a EEG for 24 hours which they ran for about 3 then gave me a LOT of Ativan then sent me home and told me to see a psychiatrist. Still have the hand trembling and all the rest but the hospitals around here SUCK.

And I was never seen by a Neurologist, they sent me an intern that couldn't speak English.

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New Diagnosis 8 years 6 months ago #34206

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Are you still on the Medrol? I'm still wondering if one of the meds is causing it.
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New Diagnosis 8 years 6 months ago #34207

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Yes, still on the Medrol but it has been cut in half (went from 32mg to 16) and still tapering. They are trying to get me down to about 4mg because of toxicity that it can cause.

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New Diagnosis 8 years 6 months ago #34208

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I know a woman who gets pseudo-tumors from steroids. Maybe you have something like that going on. I'm glad the dose is cut down. I can't believe you never saw a Neurologist. Unreal!

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New Diagnosis 8 years 6 months ago #34212

  • DanC33
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The medical community around here is horrible, which is why my regular doctor and my Rheumatologist are sending me to San Francisco because even they agree the hospitals around here stink.

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New Diagnosis 8 years 6 months ago #34218

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I think it borders on malpractice, IMO. :huh:

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New Diagnosis 8 years 6 months ago #34226

  • DanC33
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I went to my regular doctor yesterday and she is going to file a complaint with the state medical board on my behalf. And because she is on the board of directors of my local hospital she is going to recommend that they cut ties with that hospital.

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New Diagnosis 8 years 6 months ago #34230

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Well that's a good step. It doesn't help you much but it will open a few eyes, I hope. Granted, ER's are for life threatening situations and for stabilizing a critical patient. But they kept you there for a reason and should have had more follow up during and after your stay. A referral to a Psychiatrist wasn't all they could have or should have done.

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New Diagnosis 8 years 6 months ago #34248

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I checked into the so called Neurologist(all he did was look at the EEG he never actually saw me) that was at the hospital and he has several complaints against him with the state board and had had quite a few actions taken against him. I don't understand how someone with that many complaints and issues can practice in this country.

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New Diagnosis 8 years 6 months ago #34253

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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How many? I would expect some doctors to have one or two lawsuits against them; that goes with the territory. Last year I checked out my neurosurgeon before having surgery and he did have one pending lawsuit. I got a copy of the Complaint and it was not the doctors fault. The Plaintiff alleged that she was forced into having surgery against her will. I can't remember her words exactly, but I do remember that she a) showed up at the hospital the morning the surgery was scheduled and b) signed the consent form prior to surgery. I'm sorry, but if you show up and sign the consent form, that shows intent to go through with it. She could have just opted to stay home. Frivolous!

Anyway, you'd need to read the Complaint to see if the lawsuits are legit and if so, I'd stay away from that guy!
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New Diagnosis 8 years 6 months ago #34283

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In this state he's had 3 not including mine. One was dismissed because it was deemed frivolous, the other 2 are for misdiagnoses, one was a complete miss on a stroke(which almost killed the lady) the other was a miss on, you guessed it, seizures. I also went to a couple local Neurology forums and he has a terrible rating from everyone who has ever dealt with him. The sad part is he's only been in this state since 2010.(He came from Guadalajara Mexico)

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New Diagnosis 8 years 6 months ago #34285

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Well hopefully the one you have an appointment with is much better than that!

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New Diagnosis 8 years 6 months ago #34286

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Here's hoping! The one I have an appointment with is new to the area but he is registered with the American Neurological Society and he seems to be well liked by his prior patients. (came from Ohio)
He is also Board Certified and went to LaSalle University. I've decided to research EVERY doctor from now on after dealing with some real "winners" :laugh:

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