CLIPPERS: Looking to connect with others

Hello @suec147, I combined your discussion with another discussion titled, "CLIPPERS: Looking to connect with others" - https://connect.mayoclinic.org/discussion/clipperslooking-to-connect-with-others to meet the many other members discussing living with this diagnosis.

Thank you so much!

@suec147. Hi, Sue. I’m Becky and I started this discussion. I also have Clippers, diagnosed in 2017. I’m still on steroids but trying to get off. I’m also on mycophenalic acid and just started rituximab infusions. Praying that something works well! I’m 75 and all this is no fun!
I hope some other members will check in. @donnyboy is also new to Mayo Connect and Clippers.
Also what you want to do is use the @ before a member’s avatar. This way it alerts the member thru email that there is a message. Just like I did with your name at the beginning of this message. Glad you joined us! Is there anything I can answer(not that I know a whole lot!)

@suec147 @becsbuddy
Sue, I'm Don and am glad to see you join the discussions about Clippers. I am also on steroids, 20 mg/day now, and trying to find the right level of steroids as I've had several changes that haven't been associated with good results. Just got over 10-12 days of really bad hiccups, some days 24x7. What I suggest for you is to tell us more about your status with treatment and how it is going. I need to break for today but will look to hear more from you. It isn't easy figuring out how to use Mayo Clinic Connect, but it is worth making the effort. I need to improve on this as well!

@ Don thank you for responding. I am new to this. I was diagnosed in March of 3017. I have been on so many medications, none of which worked. Currently on 20mg daily of steroids and a monthly iggIVIG infusion. I was on 10mg steroids with IVIG and I had another relapse in my eye. My right eye is blind due to a relapse.
Every day is a challenge. I just fell on Saturday. My head hit the cement (front of head) nose , wrist, elbow and knee bruised. The stiffness from the steroids did not let my legs move.

Oh I also try to not sway from my diet. When I do it is never good.

Sue

@becsbuddy U am new. So sorry. How or what do I look for to find this group?

@suec147 You are in the Clippers group! You can read what others have said by going to the top of this page of comments and tapping on ‘First’ on the line of page numbers (see the photo). There is a wealth of information in this group!
It sounds like you’ve had a difficult time. Are you seeing a neurologist?
Since you have been on steroids for a long time, you may want to add an endochrinologist to your list of doctors. They can follow you for bone health since steroids cause great trouble for your bones.

@suec147 @becsbuddy

Sue, I moaned as I read what you said about years of searching for the right medication and I gasped when I read about your right eye blindness and your recent fall. You poor dear. I wish I could help immediately, but maybe something I say about my own condition and experience might lead to something of assistance to you.

My diagnosis of Clippers came on May 3rd, after my neurologist, who focuses on auto-immune issues, had tested for and ruled out a variety of possible diagnoses that would be possible for someone with a demyelination disease (e.g., MS, NMO). My symptoms, which began with left eye vision impairment, and the hospitalizations that ensued, only began last September, and finding the right prednisone regimen has been a major issue and question. Based upon earlier changes and their results, I am now on 20 mg prednisone per day, every day, plus gabepentin, while pressing forward with OT and PT. Some consideration is being given to shifting me to what Becky has started, rituximab infusions.

I’ve been very active in exploring Clippers, for example by joining Mayo Clinic Connect and doing online investigation and buying Bill Crum’s A Book on CLIPPERS. My neurologist has lined up an appointment for me in 10 days in NYC with a specialist well versed with Clippers for a second opinion or evaluation. I have also been invited for consultation anytime with a Mayo Clinic doctor in Minnesota.

Given all this, I have to ask if you are comfortable with your neurologist. Even though she gave you a Clippers diagnosis way back in 2017, is he/she an autoimmune focused neurologist? Have you received a second opinion or evaluation? Has your bone density been monitored regularly, at his/her direction?

A suggestion for using MC Connect: if you plan to write something for more than a few paragraphs, and maybe you might want to digress to look up something to include, do it off MC Connect, in Word, or Pages, or something on the side, then copy and paste it into MS Connect. I didn’t do this and lost everything I wrote earlier this afternoon when writing to you!

Hope you are feeling at least a little better now, Sue, than when you first posted a few days ago.

Don

@becsbuddy

Hi Becky,
How has your treatment with rituximab infusions gone so far? Do you have a schedule of infusions going into the future? Did you need to go off prednisone to get started with it, and if so how did that go? Have you begun an accompanying medication to go with the infusions? Pardon all the questions! I ask because my neurologist has been talking for a month or two of this as a possibility for myself. I think she wants to get me stabilized on steroids before trying rituxcimab. You are the only person I've encountered who has gone this route. I guess it is relatively new.
Don

@JustinMcClanahan

Justin, Good to see a post from a Moderator! And hello, on a bright and sunny morning in the Albany NY area. Since I'm still puzzled about how MC Connect works, can I ask you what a moderator does, that distinquishes you from a regular poster? Don