Steroid Use

[Alicia Blair]

Hi, I am a 56 year old female that started walking into walls back in April 2012.  Brain MRIs and blood test were all normal.  So was a spinal tap and  a sleep study.  Things progressively got worse and eventually a neurologist found something effecting my cerebellum but not why.  A 3 week trip to the Mayo Clinic in MN found nothing.  They suggested I get off all meds and see what happens.  After 2 months off all of the meds. Symptoms started to return. Blood tests were all normal, but the Brain MRI now showed the lesions at the base of the skull.  With help from the rare disease center, they suggested clippers. I am now on a high dose of IV steroids.   I had 3 straight days of 1,000 mg  of steroids via IV and now will get the same once a week for  6 weeks and then once every other week for 3 more times.  They also have me on 5 mg of methotrexate twice a week.   They are hoping to attach the ponds and cure everything.   When I am done the IV steroid treatments, I have to go back to the Mayo Clinic for reevaluation and another brain MRI.  I am working with Dr. McKean at the Mayo Clinic who has dealt with at least 2 other clippers patients.  Anybody else done this massive Steroid IV?  Any problems/symptoms from the steroids?  So far I am just having trouble sleeping and the nurse said the IV is what is causing me to have to go to the bathroom every two hours at night.   Very ,very tired.  No changes in symptoms except for my speech has improved.  Balance and dizziness behind the eyes seems to have gotten worse.  Patience they tell me.....   Hopefully time will tell.  Anyone know of someone being cured?  How are you living with the disease?  Still need to be on steroids?  Can you go back to work?  I have not worked since Sept.2012.  I was not driving but now will drive short distances to doctors, groceries and the library.  I have trouble with judging distance so I just need to take extra care.  My eyes do not track smoothly, but I have no double vision problems.  So many variables with all of us....  Thoughts??  Suggestions???? Ideas???????  Thanks for your input.
Alicia

[Will]

Hi Alicia. I was originally diagnosed July 2011.  My current complains are similar to yours. Poor balance, driving cautiously, speech difficulties among others. It is recommended and I was on a 'pulse iv steroid' treatment at first. In fact my initial neurologist, unconventionally, kept me on a every 4 week pulse steroid treatment for almost a year. 750 mg for 2 days the 500 mg for 2 days every 4 weeks. This caused sleep issues solved with sleeping aids. I would be very tired after each session for about a week the feel ok for 2 weeks then crummy for a week. This was expensive and time consuming to go to the hospital for the IVs. Since then I have started in March of 2013 a oral steroid regime that tapers from 60mg per day to my current 15mg per day. My current neurologist in consultation with a neurologist at Johns Hopkins are worried about a symptom that has developed involving my left arm. They want to keep me at 15mg per day for an additional 6 months before resuming taper. :(  I can consciously control my arm but when walking and unoccupied, it rises up and sort of flails about. If I walk holding my sweety's hand or keep the hand in my pocket, no problem.

This drug regime has play havoc on my sleep patterns which settled down a few months ago when I went below 25 mg per day. I still have almost all the same symptoms as I had originally only diminished in severity and without the double vision that really scared me at first. The lesions in my cerebellum are diminished and I've adjusted to my new normal. I've not being back to work since March 2013 and don't suspect I will be working anymore.

I don't know Dr. McKean but at least he has hear of CLIPPERS before. I'd trust him. I have heard of one of his colleagues Dr. Pittock, the main researcher on the original paper describing CLIPPERS. http://brain.oxfordjournals.org/content/133/9/2626.full

Let me know if I can answer any questions.

[Alicia Blair]

Thanks for your comments.  Still no major improvements with the IV steroids.  Balance is still a major problem.   I am heading back to Mayo this Sat.   Will have another MRI of the brain and check in with Dr. McKean.  I will ask about Dr. Pittock as well.  I seem to have more trouble with my balance on rainy days.  Fronts coming in seem to effect me.  Have you experienced this?  
Here is hoping for the best.

[Will]

Alicia, balance is a problem for me too. I walk like a drunk. I use a cane mostly to warn other to watch out for me. My left arm sort of flails about also. If I move slow and concentrate I do okay. My balance is only affected when I move and not when I am physically still. I can still drive and operate woodworking equipment. Maybe I'm adapting. I haven't noticed balance fluctuation due to weather. I've notice my moods seem to follow the weather, clear weather = cheery mood, rainy weather = down moods. In my case, this may be the human condition and not a symptom of CLIPPERS. I'm looking forward to the summer, 70º today. For me the IV steroids helped the double vision, lethargy and helped a little with the speech. While the lesions shrunk with the IV steroids, the balance and most of the speech issues remained.

[martin66]

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[Will]

Let me be perfectly clear. Your post and question in pure spam. Bill?

Those here, diagnosed with CLIPPRES are under the care of physicians, which I am not a physician but just a person diagnosed with CLIPPERS. There are different types of steroids and the type prescribed by physicians for the treatment of CLIPPERS are NOT the bodybuilding steroid products you are pushing with your link bait.

If I have misinterpreted your post then I'd recommend seeing a physician preferably a neurologist and following their advise, not mine.

[BillCrum]

Sorry I missed this one - had been deleted by the time I checked.

We are fortunate not to get too many random entries on this forum (yet!) and I endeavour to remove any that I feel are outside the remit of the forum.

Just for the record: people with CLIPPERS are usually prescribed CORTICO steroids and people who frequent gyms and lift a lot of weights sometimes choose to use ANABOLIC steroids. These are completely different classes of drug.

-Bill