Help with a strange rash - Keppra XR related?

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Eli said:
It has been my experience that having another dr give a referral or having them call for you gets you in quicker. Also, make the appt even if it is scheduled out in the far future. Then ask them to put you on their list for patients to call if someone cancels. You could then call them each week or so and ask if anyone cancels. Their staff will remember you for sure.

Side note - I managed medical offices for several years a couple of decades ago :p soooo what I do is this...I am super nice to the office staff and get on a first name basis with them, ie "Morn, name or ms. name, this is Eli...blah, blah, blah." Having a good relationship with the staff gets things done quicker!

I think Nakamova has posted in the past re: going about finding a good epi center.

Best wishes!
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Thanks for the info and advice. As for being nice to the office staff, I always try to be nice. I understand what it's like to be frustrated. I've been in tech support for 25 years and I'm the first person that gets yelled at when something breaks. So I always view it from "the other persons" perspective. Besides the fact that I was raised with good manners, I always go out of my way to be nice, and generally do get treated well by others...but as we know, there are always bad apples or people having a bad day :-)
 
Well, I just called my GP's office and have an appointment to see him at 11:30. My GP is absolutely wonderful. It is like he stepped out of a Norman Rockwell painting. Knows every patient, their history..and he really listens and gets to the heart of an issue. So, at the least he will look at my rash, look at the photos my mom took and I'm sure will give me guidance or at the least refer me to someone more willing to help me figure this out. I will keep everyone posted!
 
Great! i hope you get some answers and some relief.
 
Well, I just came back. Based on explaining things, my doctor said that honestly he was not sure. He said that based on the rash happening after cold symptoms, it could be something viral brought on by the cold. However, he said we can't rule out that the Keppra is the cause. To that end, he gave me a mild steroid cream for the itch and a child's antihistamine. He said to use both for a week, and if in a week, the rash did not clear up, then it is definitely related to the Keppra. As he put it, the rash appears to be getting better even though i am continuing to take Keppra, but if it does not continue to clear up, then Keppra may be the culprit.
So, for now there is some relief...but he did say that I am right to seek alternative treatments with a new neurologist, which is also what I intend to do.
 
Another new development. I'm a bit beat from today's activities, so I laid down on the couch to take a nap. My neurologist's office called me. This time, it was a nurse...and she was VERY nice. Evidently my doctor wanted her to call and see how I was doing (which makes me feel better at least). Anyway, I explained what the GP said. The nurse at first thought it strange that I would get a rash after being on something so long, so I told her I have heard other accounts of people also having the same issue, and she said that is why she was following up, as the medication may have been re-formulated.
Nonetheless, based on what I told her, it definitely sounds like something "daily" and since I only take my meds in the morning, and within two hours the rash appears, she feels that I'm not wrong in thinking it is the medication. In fact, she was rather firm that having worked for an allergist, that it definitely points to the allergy. She also told me I wasn't crazy in worrying that it was SJS or some other allergic reaction. The ER doctor told my neurologist he didn't think it was, and I told her that he barely looked at my back or the pictures my mother took.
So, I am going to see the neurologist tomorrow at 2:45. I feel better at least that they seem to be aware of what I'm going through, and at least willing to investigate...so we will see what happens.
For now, the steroid cream makes my back hurt...slight itching but more tingling...uggghh
 
Yeah I used to get those too on only just on the inside of my hands. Really strange and weird. I had my medicine changed. I don't get that anymore. I currently take Dilantin. The medicines that I took that did that was Tegretol.
 
Koda,
Yeahhhh, to a better afternoon - the drs. responding and being nice!

Hope you feel better and the rash gets resolved soon. :)
 
saw the dr. today and she's sending info to both neurology and dermatology.I should be hearing from them soon for appts.at least the VA is listenig to me.....
 
This is an excellent thread, please I hope you all update us with the outcomes of the rashes if you get any answers. I feel its very important information to share.

I also appreciate your perseverance and expectation of receiving proper medical care for an obviously serious condition. Im glad you faught through this and shared your struggle with us. It sounds like an awful drug reaction to have. I hope they have checked your liver enzymes. Sometimes if your livers enzymes are off you can get an itchy rash.

I also hope you are able to find a doctor who gives more consistent care in all seizure activity, side effects and your overall daily functioning. You deserve top notch care. Im glad you fight for that, but you really shouldn't have to.

Good luck all.
 
rich956 said:
saw the dr. today and she's sending info to both neurology and dermatology.I should be hearing from them soon for appts.at least the VA is listenig to me.....
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Glad the VA is listening! I hope it goes well and you get some relief! Keep us posted!

I leave for the neuro at 2 today and have my fingers crossed! The rash has dried up a little, but I took my meds a short while ago and have the itchy feeling back.
 
julie wishes said:
This is an excellent thread, please I hope you all update us with the outcomes of the rashes if you get any answers. I feel its very important information to share.

I also appreciate your perseverance and expectation of receiving proper medical care for an obviously serious condition. Im glad you faught through this and shared your struggle with us. It sounds like an awful drug reaction to have. I hope they have checked your liver enzymes. Sometimes if your livers enzymes are off you can get an itchy rash.

I also hope you are able to find a doctor who gives more consistent care in all seizure activity, side effects and your overall daily functioning. You deserve top notch care. Im glad you fight for that, but you really shouldn't have to.

Good luck all.
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Well, I believe very firmly in being your own advocate. Nowadays, we have to be to ensure we get proper treatment. With our condition, I am learning even more so. Look at that ER doctor. He punched in a couple of words on his smartphone and just because his phone said "no interactions" he was annoyed that I didn't want to take Benadryl. I tend to err on the side of caution since being diagnosed in 2010 and I will not take most OTC meds. Yes, the database says no interaction, but as we all know, we have a secondary seizure threshold to worry about.
I consider myself lucky that I was diagnosed, know the cause of my epilepsy and thankfully (now) can drive. So I work very hard to maintain my health and if it entails having to go from doctor to doctor to find the right one who will truly help me, then so be it. I think that is why these forums are so important, because while tests and studies can claim accuracy, as we all know, everybody is different and by seeing and hearing real experiences we can better gauge our own reactions and make more informed decisions regarding our health.
 
So, I saw my neurologist today. She felt bad for what I dealt with, and apologized for the patient care line treatment I got. Anyway, she agreed whole-heartedly that I had a right to be worried. As she put it, she'd been on the fence about the Keppra the past few visits and just wasn't sure whether it was time to switch or not, but she feels the rash is probably a good reason to give a new med a try.
I start Lamictal XR tomorrow, so fingers crossed. It will be interesting to see how it goes, since I have to still take the 2000 mg of Keppra XR the first two weeks, with the low dose of Lamictal XR, along with my 200 mg of Zoloft, the antihistamine for the rash, and the steroid cream for the rash. But, my neuro feels that the Lamictal may be a good choice since I did have the mood issues with the Keppra that were rearing their head more often as of late.
So, I am going to think positive. Fingers crossed. I did tell her that others had reported similar issues like mine (the rash) and she felt then that making the switch was a good thing. As I said, I am going to remain positive!
 
Koda1021 said:
So, I saw my neurologist today. She felt bad for what I dealt with, and apologized for the patient care line treatment I got. Anyway, she agreed whole-heartedly that I had a right to be worried. As she put it, she'd been on the fence about the Keppra the past few visits and just wasn't sure whether it was time to switch or not, but she feels the rash is probably a good reason to give a new med a try.
I start Lamictal XR tomorrow, so fingers crossed. It will be interesting to see how it goes, since I have to still take the 2000 mg of Keppra XR the first two weeks, with the low dose of Lamictal XR, along with my 200 mg of Zoloft, the antihistamine for the rash, and the steroid cream for the rash. But, my neuro feels that the Lamictal may be a good choice since I did have the mood issues with the Keppra that were rearing their head more often as of late.
So, I am going to think positive. Fingers crossed. I did tell her that others had reported similar issues like mine (the rash) and she felt then that making the switch was a good thing. As I said, I am going to remain positive!
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Excellent MD visit. I love hearing this. Gives me hope I might find a good one someday. Maybe you should keep her? She sounds like she listens better than a lot of them. Maybe ask her straight up at your next visit if she feels partials or simples are important? Thanks again for sharing your story. I hope you have a good outcome with your Med changes.
 
julie wishes said:
Excellent MD visit. I love hearing this. Gives me hope I might find a good one someday. Maybe you should keep her? She sounds like she listens better than a lot of them. Maybe ask her straight up at your next visit if she feels partials or simples are important? Thanks again for sharing your story. I hope you have a good outcome with your Med changes.
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Yes, I am definitely going to keep her. The one thing I DO like about her, is that maybe because she is younger, she is not as afraid of technology today as some "older" doctors. I mean that she knows I do my research, belong to boards like this, etc. and she doesn't feel it's an affront to her. Yesterday, for instance, she asked if in my research I'd come across some other drug that sounded more promising that I might want to try. I appreciate that, because she lets me have a hand in my treatment.

Finding a good doctor is important. Look at my GP...he's no epilepsy specialist yet when I told him the ER prescribed Benadryl he scowled! He prescribed a low dose steroid cream and a child's antihistamine, and when I told the neuro she was pleased as she said that is the safest course of action to help with the rash! It took me two years and dozens of doctors to find him, and when I did, I knew I found a keeper. Likewise, same for my OB. He listens and lets me participate in my treatment. But again, took many trips to other doctors. In both cases (GP and OB) they wound up fixing issues I'd had long term that other doctors just didn't investigate further (kidney and reproductive issues). So, definitely find the right fit insofar as doctors is VERY important!
 
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