6 Hours at The Doctors Office today but got some results!
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June 9, 2009 at 2:13 am
Hi family! Got to Greenville this morning at 8:00 AM for my appointment. Told the doctor everything that was going on. Alot of my labs came back positive for a Lupus Flare. Told him about my leg cramps and sudden weakness in my legs and arms. Long story short! Let’s just say I let it out! Even started crying! We know I have CIDP and I wanted to know about getting IVIG’s started. He told me that he wants to try putting me on a Chemo type drug first and see what happens. If I do not improve on the Chemo drugs first then we will try the IVIG’s at a later date!
His office is located inside Pitt Trauma Center. Since I was showing alot of muscle weakness and mentioned Potassium levels. He sent me over to the lab and wanted a SED Rate, CPK and Potassium Levels and several other labs. Did not write them down this time because they took my lab paper before I could finish it! He ordered the labs on a Stat basis. Some of the labs they read there like an ER would do. But a few will take a few days before they come in.
And then wanted me back in his office and then I had to wait! We sat in his office for 5 long hours! Got called back in and I have Lupus Myositis! So now I am dealing with Myositis with causes muscle damage and CIDP!
We have increased the prednisone back to 60mgs and I am now going to be takng Azathiophrine 50mgs once a day! The nurse was really nice! She sat down and told me what to expect with this drug. Every two weeks for 6 weeks I have to get labs taken though! I hate needles! LOL! Ohh boy! Why me?
I took my first dose this evening and they said to take it on a full stomach. So far right now I am doing okay with my first dose! They said that I might not see any improvements at first and it takes time for the drug to start suppressing the immune system. But the prednisone right now at a high dose may help me get better with the myositis but not overnight. I did not take the 60 mgs last night because I was exhausted when we got home and after eating I went to sleep at 6PM And woke up at 12. Going to try and go back to bed soon and sleep some more! That trip was exhausting.
But! I am now getting treatment for my CIIDP, LUPUS and the Myosits. Thank-GOD! Finally! Just hope and pray this works! For I really hate needles! Well off to bed I go! Good night family or should I say Good morning! Hugs
Linda H -
June 9, 2009 at 9:17 am
I’m sorry Linda but I am totally confused.
They are saying that you have Lupus and Myositis that causes CIDP?
Myositis is an inflammation of the muscles – it shouldn’t affect the nerves like CIDP. Lupus is inflammation of organs & can affect your nervous system but it’s not truly CIDP.
Do you have organ involvement with your Lupus?
Maybe you have Myositis alone & that is the cause for all of your symptoms.
Is your dr ordering antibody testing for myositis?
I don’t remember but have you had a spinal tap come back with high levels of protein? Have you had MRI’s of your brain & spine showing inflammation? What about your EMG/NCV’s? Have they come back showing demyelination consistent with CIDP or with Myositis or with Lupus?
I think you need to go for another opinion because it sounds like every time you go to the dr’s you are getting a new diagnosis. I think you owe it to yourself to investigate this further.
Kelly
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June 9, 2009 at 10:24 am
So I did some Googling….
It looks like you may have System Lupus Erythematosus. Apparently it attacks the blood vessels & causes CIDP like symtoms.
Here is the link to the article I found:
[url]http://emedicine.medscape.com/article/1146456-overview[/url]
Here is the text:
Neuromuscular manifestations
Peripheral manifestations of SLE include peripheral nerve injury, myopathy, or disturbances of the neuromuscular junction, which may clinically duplicate myasthenia or myasthenic syndrome. Peripheral neuropathy may result from vasculitic insult to the vasa nervorum (clinically resulting in mononeuritis multiplex or a more confluent polyneuropathy) or from a demyelinating pathology (which clinically results in a chronic sensory or sensorimotor polyneuropathy or, more rarely, in an acute motor presentation resembling acute inflammatory demyelinating polyradiculoneuropathy).
Myopathy in SLE most commonly results from vasculitis of the small vessels feeding the muscle, with pathology reminiscent of dermatomyositis, although on rare occasions the pathophysiology more closely resembles polymyositis with inflammatory involvement of muscle fibers themselves. These findings may be distinguished pathologically from medication-associated myopathy resulting from steroids or hydroxychloroquine sulfate therapy.
If I’m reading this correctly the CIDP symptoms & myositis symptoms are all caused by Lupus. You should be receiving treatment for the Lupus ASAP.
I read more of the article & it says IVIG should be considered when patients are having CIDP like symptoms. Here is the link: [url]http://emedicine.medscape.com/article/1146456-treatment[/url]
And the text:
If a patient with SLE presents with acute polyradiculopathy resembling Guillain-Barré syndrome or chronic relapsing polyradiculopathy resembling chronic inflammatory demyelinating polyneuropathy, treatment with IV immunoglobulin (IVG) in conventional doses should be considered. When IVG is unavailable or poorly tolerated, plasma exchange should be considered as an alternative. Unfortunately, few therapeutic studies exist on these rare presentations of SLE.
Hope that helps some.
Kelly -
June 9, 2009 at 6:28 pm
Hi Kelly! Unfortunately I have the Systemic form of Lupus which attacks the organs and any other part of the body it wants to attack! Have had MRI’s. EMG’s, Spinal taps you name it I have had it! Labs to the point that I am sick of them!
My Lupus by what Duke Medical Center and after seeing 3 different Neurologist claim that I have CIDP but the pattern of nerve damage I have is a Small Fiber from the Biopsies! Chronic Inflammatory Demylinating Motor/Sensory Polynreuropathy but it too has often effected the large fibers also by what my biopsy read. Attacking motor nerves and sensory nerves! After we talked yesterday I wanted to know what kind of CIDP this was because so many I talk to are getting IVIG and I wanted to know why I was not getting it! So he explained everything to me! My attacks though on my nervous system almost acts like MS. Constantly attacking me over and over again! I was diagnosed many years back with CNS Lupus where it attacked the brain and spinal cord! Was in the hospital 2 months with that attack. But this kind of nerve damage has been totally different and rather painful in nature! The nerve damage ended up going into CIDP but caused by Lupus.
Now I have CIDP and Myositis. Lupus is attacking my muscles. And the CIDP is attacking my nerves! Right now I am seeing a Professor of Rheumatology at Pitt Trauma Center. By what I have been told he is one of the best Rheumy’s they have around in NC! Yesterday was my second visit with him after being tossed around so long with the Neurologist!
CIDP is a definite diagnoses. But now I also have Lupus Myositis along with having CIDP. I have both going on with me right now! The Myositis just started acting up these past two weeks. THe CIDP has been there a while.
I started getting leg cramps and weak feeling muscles two weeks ago and it felt different from CIDP!But at least I am getting treatment now! All the patients that I have talked too so far in his office waiting to be seen by him all give him high reccomendations! Have heard some stories from quite a few patients of his and they all have given him an A+++ of a doctor!
Kelly! I stay sick alot! I’m surprised I have lived as long as I have with this disease with all the problems it has given me! I have seen hospitals so many times it’s no joke! Hope this answered everything!
Yes! I am a confusing patient! Been a hard case to figure out too! LOL! Hugs
Linda H -
June 9, 2009 at 8:32 pm
Linda I am glad you got some answers and a good DR also.
I hate finding that I have new things wrong with me but I rather know what it is then wondering and trying to get answers.
Sue
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June 10, 2009 at 8:03 am
Thank-you Sue! Yes it is bad getting something new on top of having other problems. This disease has done some major damage. I get abdominal pain alot with my disease. Lupus has even attacked my intestines. I get spells at least 4 times a week of IBS. Caused by the Lupus. Finally taking meds now for it because it was getting bad! Just out of the blue I will get spells of vomiting and because I have gotten sick so many times it caused a Hiatial Hernia. Then because my stomach would stay upset alot, I developed Diverticulitis.
Because of long term medication use especially steroids, I now have B-12 A Pernious Anemia. And the list goes on~ Sad thing about having a disease like this is that some people can have this disease and do fine and go into remission. Others on the other hand sometimes don’t do as well! Leading from one problem to another one over and over again!
I have only seen 1 remission since my diagnoses. And that was in 2002 and lasted two years! Ohh how that felt fantastic~ I actually felt like a normal person! I started working out and getting exercise and got strong and healthy again! And believe me! Those two years I lived it up! I was like a bird that had been set free from it’s cage! My husband could not keep me home! LOL! I was going out all the time. Movies, dinners, yard sales.
How many of us go into Walmart and think of it as being fun shopping at? You go in there and grab what you need and get out as fast as you can when you are sickly! But when I was in remission, I even had fun shopping. Took my time and looked around. It was fun! LOL! Back then I could walk a mile and still had energy left. Now I am lucky if I make it through the house. Alot of changed for me these past 4 years. Last year though my nightmare started all over again and still trying to fight this mess off!
That CIDP stuff is nasty! Especially with another disease on top of it! I don’t with this stuff on anybody! But then I look at myself and have to say that their is somebody out there much worse off than me!
When I get homebound while being sick, then I try to enjoy inside things, like crafts, tv, books, cooking. But long periods of doing this gets boring! Hugs
Linda H -
June 10, 2009 at 10:35 am
Hi Linda – The kind of Lupus I wrote to you about was Systemic Lupus – exactly what you say you have been diagnosed with.
What you described in your last post to me sounds exactly like what I researched yesterday and the articles I read say it’s the Lupus causing your CIDP symptoms & you should consider getting IVIG. Maybe you should print these articles & give them to your neuro – to help your case in getting IVIG.
I found a study done on small fiber nerve damage & SLE. Here is the link to it: [url]http://www.ncbi.nlm.nih.gov/pubmed/16533967[/url]
And here is the text:
BACKGROUND: Systemic lupus erythematosus (SLE) is an inflammatory, autoimmune, multiorgan disease often involving the central and peripheral nervous systems. OBJECTIVE: To determine whether there is a selective small-diameter nerve fiber neuropathy in patients with SLE. DESIGN: Cross-sectional study. SETTING: Stavanger University Hospital, Stavanger, Norway.Patients Sixty patients with SLE, aged 43.2 +/- 13.5 years (mean +/- SD). INTERVENTIONS: Skin biopsies, nerve conduction studies, and clinical neurologic examinations. MAIN OUTCOME MEASURES: Density of intraepidermal small-diameter nerve fibers in skin biopsy specimens and large-diameter nerve fiber function as determined by nerve conduction studies and clinical examinations. RESULTS: The mean density of intraepidermal small-diameter nerve fibers in patients with SLE was 7.5 +/- 3.8/mm. Eight patients (13%) had densities below reference values, consistent with small-diameter nerve fiber neuropathy, and results of nerve conduction studies were normal in 6 of them. Eleven patients (18%) had abnormal results of nerve conduction studies, reflecting large-diameter nerve fiber neuropathy, and 4 patients (7%) were classified by an experienced neurologist as having polyneuropathy after the clinical examination. CONCLUSIONS: An abnormal reduction in intraepidermal small-diameter nerve fiber densities is evident in some patients despite normal function of their larger nerve fibers. This adds further support to the theory that a pure small-diameter nerve fiber neuropathy may occur in SLE.
According to this research it’s possible to have small nerve fiber neuropathy be caused directly from your Lupus. This could mean you really only have ONE disease & not the 15 million (just joking!) you’ve been diagnosed with. If it were me I know I would feel much better knowing I only had 1 disease causing all of my problems & not many.
Do you post on a Lupus forum as well? People there might be able to offer you some more insight into your CIDP symptoms – since they are caused by the Lupus. Most people who post here have idiopathic CIDP (of no known cause) they may be experiencing symptoms similar to yours but I would bet that others with SLE would be able to offer much better insight to help you. I’m sure there are others out there who are experiencing the exact same thing you are going through. They will know what treatments works best & what to stay away from.
I know it must be difficult to deal with having a variant of Lupus that seems to attack everything – I’m just trying to help you get the best support possible for it. I know you’ve been very sick & stay sick & I hate to know that. During my research over the last few days I became confident that you can get the Systemic Lupus under control if you can just find the right treatment regimen.
Hugs,
Kelly -
June 10, 2009 at 2:36 pm
Hi Kelly! I was actually in a forum many years ago but that forum closed down. I have quite a few friends to that have Lupus and we email and stay in touch! I actually joined one forum last year that was huge and I just could not keep up with them in there. The forum was just to big to handle!
I have only met two others that were just like me and one is in Australia and the other one was from France.I agree with the IVIG’s and really do think I need to be on them but arguing with these doctors where I live it’s like they don’t want to listen and want to try the Chemo out first. I too think it’s an Insurance protocol that they have to go by in order to be approved.
This state I live in you just about have to be on your death bed on order to get anything done around here! I don’t know if it’s because they are short of staff or just don’t have enough experienced doctors.
Me and my husband both agree that I will try the Chemo and if that does not work in 6 weeks and I see no improvements then we are going to see about getting me referred to John Hopkins which has a great Specialty for Lupus patients. It’s a long ride though but I may have no other choice. If I were back in PA I’m pretty sure I would have already been placed on IVIG’s.Sometimes I feel like these doctors around here are trying to get some money out of you first before they do treatment. Well lets make 10 grand off her first then give her treatment! LOL!
He has only seen me two times so far and I think he wants to see how bad off I am in the next few visits before he decides the IVIG! After reading about the Hydroxycloriquine drug I decided not to take it this morning! LOL! Now I’m scared to take it!
I hope you all don’t mind me staying in here! I feel like I have a family here! Where the other forums I just don’t feel like I fit in! I’m uneasy and just feel weird posting! Thanks for the help though. I do agree with you and think I need the IVIG’s too! I printed that out too to show him on my next visit! Then will be anxious to hear what he then says! Hugs
Linda H -
June 11, 2009 at 2:54 pm
Hi Linda!
I’m sooo sorry that you’re going through all of this mess! Your story just [U]rips[/U] [U]my[/U] [U]heart[/U] [U]out[/U]!!!
YOU BETTER NOT EVEN THINK ABOUT LEAVING THIS DISCUSSION BOARD! YOU’RE A BLESSING TO EVERYONE HERE!!!
May I suggest that you see my neuro at UNC before you go to Johns Hopkins? She’s excellent, and it would be a much shorter drive for you. Contact me privately if you want her contact information.
Remember, UNC is a state hospital… by NC law, they HAVE to treat you whether you have insurance or not, and whether you can afford it or not!
If you do decide to go to Johns Hopkins, ask to be seen by Dr. Vinay Chaudrey. He’s a WONDERFUL doc who first diagnosed me 10 years ago.
God Bless,
Kevin (KHS730)
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June 11, 2009 at 3:42 pm
Hi Kevin! Somebody mentioned to me about going to UNC also and seeing a Dr. Kein or Cline! She’s a female doctor and by what I was told a really good one to see!
If this doctor does not see that the Azathioprine is not working in 6 weeks showing no signs of improvement then he is going to discuss IVIG’s with me! I’m pretty sure in due time they will end up placing me on it! Just having to go through the Insurance protocol before they will agree to it! I’m pretty sure that is what is going on.
They do use Azathioprine alot for Lupus and it is used for treating some types of CIDP. So I will do a wait and see what happens deal!
BUT! In 6 weeks if I am no better then I am going to be raising cane with some doctors! LOL! In 6 weeks if don’t see me in here then you know they threw my 222 in the looney ward! LOL! And that will probably just be my luck!
Thanks Kevin! Hugs
Linda H -
June 11, 2009 at 5:10 pm
I’m so sorry you’re going through all this. I hope the new dx and rx get you well. Keep fighting.
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June 11, 2009 at 5:31 pm
Hi Linda,
My neuro is Dr. Caroline M. Klein at UNC.
She obtained her medical degree at Duke, and did her neurology residency at the Mayo Clinic.
She’s now a prof. of neurology, and is rated as one of the best neuro docs in the country.
Just let me know if and when you’re ready to make an appointment with her, and I’ll give you her contact info.
God Bless,
Kevin (a.k.a. KHS730)
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June 11, 2009 at 8:43 pm
Linda,
I am sorry about your new diagnosis, but happy they found some clarity and possible treatments.
When I did the Imuran (aziathropine), i started out at 50 for a week or so, then 100 then 150 then 200. I stayed at 200 for a good long time. They wanted to make sure I could tolerate the dosage before moving up.
Try to take the prednisone in the morning, it will help all day and still let you sleep at night, not keep you all hopped up all night long.
I hope everything works out. I’ll be thinking and praying.
Dick S
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June 12, 2009 at 9:42 am
Thank-you Dick S and Kevin! I have actually been thinking about getting in with Dr. Klein but will wait and see what this Rheumatologist does first.
Dick S! That is what they plan on doing with me! Increasing the dosage. They want to see how I do first on the 50mgs for 6 weeks though due to me having hypersensitivity to certain medications. If I do okay these next 6 weeks then they are going to raise the dosage on me also!
Question for you? Has this treatment worked okay for you or did you have to stop the treatment? I am hoping this drug works for me but am scared! I have taken 4 dosages so far being my 4th day with tonight being 5 and so far I have done okay tolerating it! Did wake up this morning though with some mild stomach cramping but was not bad. Just a little cramping and my appetite yesterday and this morning has been a little weak.
I take the Imuran at bedtime for they said it helps with the side effects better than taking it in the morning. The prednisone I am taking in the morning. After I take the prednisone then about an hour later I get my appetite back. So far I have done okay taking it and not gotten to bad off with it just yet!
My doctor wants to wean me off the prednisone as time goes by and keep me on the Generic Imuran. Hate spelling that long drug name~ LOL! This is what their plans are with me so far!
Also! How long did you go before you started seeing improvements? They told me it won’t be overnight seeing that but was curious about how long! A month, 6 months, a year? LOL! Okay! Yes! I am full of questions! Hugs
Linda H -
June 13, 2009 at 1:23 pm
Linda,
Regarding Prednisone — In my experience, they look for clinical improvement and then start decreasing the dosage. Clinical improvement continues while you reduce doasge. Somewhere along the way down, you will probably have an increase in symptoms. Then they will hold at that level, or a little higher, and then try to slide back down. It takes a long time to get off Pred. (sigh) I remember it all too well.
Regarding Aziathropine (imuran). I took it as an immunosuppressant for three years and stopped on my own due to no money. FOR ME, I am not sure. Things didn’t get worse as fast, but we never knew exactly why. I took 2 treatment sessions of IVIG, several times one month, and then several times a second month. I was on the imuran. The result was that the rate of progression slowed. It never stopped getting worse. I just went downhill slower. NOw my neuro says the neuropathy is about the same as three years ago. My pain and residual problems are up, but the neuropathy is holding.
He said that it could have been one or the other, but was likely the combination of my body and the treatments. Since I quit the imuran without any extra problems he said to stay off of it. So, I am wishy-washy about the imuran. (FOR ME) It is probably the safest entry drug chemotherapy wise, lowest side effects, lowest problems, etc. I hope it helps you !
Many people use the imuran with success. Some do not, and then they try another one. There are many others to try, so don’t despair if this one doesn’t work.
Good Luck
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June 14, 2009 at 12:16 am
Hey Linda,
I feel your pain. I have systemic Lupus and CIDP as well and I receive
IVIG every 3 weeks. I don’t know what I’d do without it, although I’m not sure if it’s working as well as it has in the past. I also take Cymbalta and Topamax to help relieve my pain. (Lot’s of Ibuprofen if needed) Prednisone wasn’t working for me. I think each doctor has their own idea on what works but since we are all different perhaps they can try IVIG since it’s known to work.Good luck,
Joyce:o
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June 14, 2009 at 7:06 am
Thank-you Dick S about the information about the Imuran. I hate spelling that other name! Too long typing! LOL!
Ohh my gosh Joyce! I am so glad to meet another person with Lupus and CIDP! But hate that you too are going through what I am going through. So sorry you have to deal with this stuff! It’s a nasty disease isn’t it? 😡
My husband and I both agree that I need IVIGs. I have to go every two weeks in Greenville just for labs. Then in the first week in August I see the doctor again. If I see no improvement at all we will both be pushing for IVIGs. Unless they see me in the ER first! I see my regular doctor in July and plan on getting him to refer me to see that Dr. Cline! Hopefully he will get me in! But it might be 3 months before they can see me! Just depends on that doctors schedule!
This nerve damage stuff feels like a cancer eating away the nervous system. It is even on my head area. My ears go numb, my face goes numb, nose feels funky. Both of my arms now are dead feeling with limited use and my legs.. they are going down fast! Still walking but struggling to do so nd have to use a walker at times and when going places that require long walking I have to use the wheel chair!
today I am going outside to my container garden and have some carrots to pick! I have one of those garden stools that you sit on and wheel yourself around. Going to have buttered carrots for dinner tonight! Siuch a pleasure meeting you Joyce!
Hugs
Linda H
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