Sevella

Hey Wonderful people!
I don’t know why but my Neuro is not wanting to start IVIG after 1 year in to my diagnosis. Instead wants to start me on Sevella. Any feedback??

Hi Sunshine,

Does your Neuro think you have Fibromyalgia? Savella is for the treatment of pain - but if you have CIDP you also need to do something to treat that too. I think I'd go for a second opinion. And that's just my opinion for what it's worth.

Good luck, Lindae

I have never heard of using Sevella for CIDP. Is he really confident of the diagnosis of CIDP? Does he understand what CIDP is? It is an autoimmune disease, and the treatments have to be something that works on the immune system, either by counteracting it (prenisone or IVIG), or by removing the harmful antibodies (plasmapheresis).

I would get a second opinion.

By the way, IVIG worked almost like a miracle for me.

Bill

Find a local chapter

centers-of-excellence

You may want to try a neuro with more experience with CIDP.

I don't know how how far you are from Huston but check out the centers-of-excellence link above.

There is also a contact page that will let you know if there is a chapter close to where you live.

Hope this helps.

Rick

Hi I have had about 12 IVIG infusions and doing better! My Dr had me get a spinal tap and my protein was very high! My Dr had me start a series of four infusions back to back the day I was diagnosed!!

I had every test under the sun and after a spinal they found cidp. Only after a nero told them to try that.. I was 12 weeks from the first symptom to diagnosis so I have no idea how you are getting through a whole year without treatment. they had me on ivig within a week and it was amazing how much better it made me and fast. I am still on treatment every 3 weeks but living a somewhat better life. I was diagnosed jan 14. if u wanna chat inbox me. I called my doctor everyday for weeks until they figured it out. I wish you well. persistence is the key

Thank you guys. That is the problem, I’m not making it anymore. It’s scaring me.its so bad I can’t concentrate at work from the burning pain. I am taking 10/325 hydrocondone, 1800 mg gabapentine, 150 nortriptyline, 80 mg Baclofen, and usually topical lidocaine for my feet to manage shoes and aspercream for my hands and back so I can sit at my desk and type. My office bought me a $400. Memory foam office chair. So I am blessed. I just wish it worked. I can’t wear clothes that are attractive because everything hurts. Air hurts. If I have a rare NUMB moment I will jump in the shower so I can get clean and not cry through the process…but here is the deal…if I try to explain this to my sweet and precious Neuro again?? I will get told I am depressed and need counseling and I AM A COUNSELOR. I think that my dr bit off more than he could chew when he read my EMG … I live in Texas…Houston it is!! Thank u guys !! I don’t know where I would be right now if I had not found this group ! Thanks to you, I know why I am on fire.



Sunshine 58 said:

Thank you guys. That is the problem,,, I'm not making it anymore. It's scaring me.its so bad I can't concentrate at work from the burning pain. I am taking 10/325 hydrocondone, 1800 mg gabapentine, 150 nortriptyline, 80 mg Baclofen, and usually topical lidocaine for my feet to manage shoes and aspercream for my hands and back so I can sit at my desk and type. My office bought me a $400. Memory foam office chair. So I am blessed. I just wish it worked. I can't wear clothes that are attractive because everything hurts. Air hurts. If I have a rare NUMB moment I will jump in the shower so I can get clean and not cry through the process.....but here is the deal....if I try to explain this to my sweet and precious Neuro again?? I will get told I am depressed and need counseling and I AM A COUNSELOR. I think that my dr bit off more than he could chew when he read my EMG .. I live in Texas....Houston it is!! Thank u guys !! I don't know where I would be right now if I had not found this group ! Thanks to you,, I know why I am on fire.

Please get a 2nd opinion. Check them out 1st on Vitals.com or helathgrades.com You need to go in with a pen and paper and specifically ask your Neuro WHY? Perhaps there is a co existing disease conditin that IVIG may be contra indication? <Just a guess> Have you treid to carefully montoring your Omega 6's (US ratio 30 to 1) Greek Isles with far less cancer and auto imune diseses 4 to 1! SEE: THE OMEGA PLAN DR. Simopoulos CHEAP on Ebay/Amazon <USED>