Pulse infusions

HI everyone,

I am curious the experience people have had with steroid pulse infusions? I have been seeing doctors for 14 years and because it wasn't showing up in my blood except for my ana and high inflammation rate drs.(several) would say no autoimmune. Finally I found a dr. who did a lumbar puncture and found the evidence along with alot of symptoms. He says after these 3 days of infusions most people with lupus attacking the nervous system and brain recover 100%. Does anyone have experience with this? Right now i can not drive, my husband has my 89 year old father staying with me because i talk gibberish and hallucinate and sometimes go into a nonresponsive trance. I am just hoping to get part of my life back.

Thanks for any input, or thoughts.

I looked on line a bit and it looks like it's also used to treat MS and Graves Disease. It's covered by most insurance companies, so that would seem to indicate that it's on the up and up. I also looked up the term along with the word "scam" to see if anything came up listing it as a scam and nothing did, so that's good. If you feel better is anyone's guess but maybe people who have had it will write to give you more info. I wish I could but I haven't had it done. It surely sounds like a good treatment.

Thanks Petunia for the info. Actually my dr. said i have either lupus attacking the nervous system and brain or ms. He feels more strongly towards lupus. But it is interesting that the treatment is used for ms also. I started the first one today and do not feel any different. We'll see how tomorrow goes.

Hi! I was in the hospital for a month last January with similar symptoms and ended up having pulse infusions of steroids. They literally saved my life! It’s a tedious process. For me it was three days on the IV, followed by weekly treatments. But today I’m doing extremely well. Good luck!

Thanks mbaer2007,

I started my treatment yesterday and have two more days. I have developed a really bad sinus headache and dizziness. Headaches are normal for me but this is definitely sinus, my face hurts to the touch. I wonder if this is a normal side reaction? I will mention to them today. I'm looking forward to positive results.

Hi Reddog:

I had the same treatment - IV steroids (1000mg daily) this past May. I was hospitalized for extreme vertigo, blackouts, and cognitive dysfunction. The treatment helped, but it has taken several months for things to get back to "normal". The headaches could be part of the treatment. My doctor also stated that some people have problems with psychosis during the treatment, but that did not happen to me. I have continued taking prednisone, but have begun tapering off. All in all MUCH better than before. Good luck and don't give up!

Hi Ginger,

Thanks for the info. When you say back to normal did your brain function return to normal and the rest of the symptoms disappeared? My brain is pretty bad at times. I don't know what you were experiencing. There are times i can not find words and i have broken speech, sometimes i am disoriented and i guess i hallucinate. There are times i become unresponsive and just stare into space. Do you think this will go back to normal? My doctor thinks so.

Hi RedDog.
I have all of the symptoms you mentioned except for the hallucination and unresponsiveness. I had a contrast MRI and lumbar puncture which showed inflammation in the brain. Given the lumbar puncture and MRI results, MS and brain tumour were ruled out, along with a few other conditions.
I was put on twice my dose of pred and Imuran. I have now lowered the pred dose to 5 mg and increased the dosage to 200 mg daily. At my last appointment in June, my rheumy said that he didn’t believe the Imuran was working well enough and that he may switch me to CellCept when I see him next in April. When I told him at least a year ago that when I had to return something at the pharmacy, I was asked to write my name and address on a form for the return. I was shocked and panicked when I couldn’t remember it. I finally realized it was on my driver’s licence. When I tried to write out the info, I had difficulty making my fingers form the words, even printed. I actually had to concentrate like a young child just learning to print the letters. I almost had to ask the store clerk if she could copy the address from my licence. I managed to finish up and then headed straight home which, luckily wasn’t that far.
I took much pride in my ability to express myself and am often frustrated when only “word salad” as someone described once called it. I can’t find the right words or get a simple idea across without resorting to much simpler descriptions (I call it talking around the subject). An example might be when I ask my hubby about “the thing where such and such is kept”. It’s bad enough to do that around my hubby and close family, but even worse with friends or complete strangers! So I do understand what you described in your post. It is still pretty bad when I am having a brain fog day, worse than normal, and I’m trying to express an idea to my hubby. I can’t find a word or even some substitute. At that point, my hubby says “I need a noun”. Sigh. I know that too, but I’ll probably remember it at 3 in the morning when I’m wide awake.
When I told my rheumy about episodes of staring off into space when sitting in front of the laptop with no sense of time having elapsed, that could be a sign for a type of epilepsy. I was tested for epilepsy which, thankfully, was negative.
Due to my symptoms, I took myself off the road in May, 2013, with the strong agreement of my specialists. I did not realize how long that would last. My husband had recently retired, so he now drives me whenever I need anything from doctor appointments, lab work or just shopping for a couple of items. I hate, absolutely hate, losing my independence. I cannot wait until the day I can drive myself again. He finally understands how much time my appointments take, keeping on top of scrips (I take about 15-20 types).
Although I have never taken the steroid pulse infusions. I hope they work for you.
My doctors (rheumy and neurologist) agreed that CNS Lupus can be reversed, but it won’t happen overnight, so to speak. My rheumy did say though, that patients who have had CNS Lupus may have a relapse. I think we can hope that you and I will be done and over with it once with no relapses.
For nine months, I was told not to even do mild stretching without “supervision”, given the danger of seizures and stroke with active CNS Lupus.
I should mention that I am 57, so the risk factors may be different for you and a different type of treatment may be more suited to you specifically.
I wish you the best with the pulse infusions. I sincerely hope they will do the trick. All the best.

Hi Tiger,

Wow I can so relate to everything you said. Examples: my dad asked me were the phone was and I was walking toward the refrigerator, so I say what i see than i was able to correct myself. Like you I have had moments were my husband would have to give my birthdate at the pharmacy. I have given incorrect dates on the phone and after several times of them repeating i would realize. I wrote the year as 20014 on a check on stood staring at it knowing something was wrong but unable to figure it out. I have a hard time with questions and that is when I lose words and pressed can go into an unresponsive state. At restaurants i become frustrated when asked what i want and my husband will have to order for me. I want to start going out with friends again and back to book club but it scares professionals when i have episodes. What are your thoughts on this? Like you i stopped driving over last summer, when it started getting real bad it started with bad vertigo. Because of this i was told i could not drive. I am close to you age, 53. My husband has my 89 year old father stay with me because of the hallucinations and trances. Funny, i should be taking care of him. Your staring off into space is somewhat similar to my episodes. I stare off into space usually when i am pressed with alot of questions i have a hard time answering. Sometimes i can hear people speaking but i am unable to move or speak. Sometimes their speaking doesn't make since or i don't hear them. This has happened in front of drs. and i did have several emgs which the last one showed some slowing on the left hemisphere. It feels so good to talk with someone who is going through the same thing. I hope we both can regain our independence soon. Take care.