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diagnosis has been changed to PPMS


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Old 11-29-2018, 06:21 PM   #1
bhmomof2
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diagnosis has been changed to PPMS

Has anyone here been on Ocrevus? My diagnosis has been changed to PPMS and I will be starting this month. Just curious about anyone’s experience.

 
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Old 11-30-2018, 10:06 AM   #2
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Re: diagnosis has been changed to PPMS

Ocrevus is a rather new drug. I havent seen anyone post about it yet, but maybe someone is lurking who will respond to you.

I am sorry that your stage has changed. May I ask what caused your doctor to decide that? Ive often wondered how after 15 years I am still R/R.

I hope this drug works for you!
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Old 11-30-2018, 04:14 PM   #3
bhmomof2
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Re: diagnosis has been changed to PPMS

I just recently changed doctors. I have been getting progressively worse over the last few months. Went to the ms specialist I had been seeing for 10 years and he basically just increased my medications and had me start pt. I have been talking with a new friend who has been telling about her doctor and decided to just go for second opinion. He spent 1 1/2 hours with me that first visit and after reviewing my previous mris and history he said he thought it was PPMS. He also had me do a 3 day iv steroid and start ampyra as well as other new vitamins. Although I haven’t really gotten better I feel like he really listened and will work with me to have my best life. I think my previous doctor and I were just stuck in the “you have ms so just accept it” rut.
Sorry if that was long winded, hope it answered your question.

 
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Old 11-30-2018, 05:13 PM   #4
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Re: diagnosis has been changed to PPMS

That wasnt long winded at all. I hope you continue to like this new doctor and the change in meds works for you! Sometime, that is all we need.

I have been on 8 different DMDs and recently stopped taking Aubagio due to kidney problems. The only consistent drug I have been on for 10 years is low dose naltrexone (LDN). It is not used often in the US but it is used regularly for MS in Europe and Australia and it seems to be keeping me stable. I know it helps with pain. Maybe your doctor is familiar with it?
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Old 12-02-2018, 07:45 PM   #5
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Re: diagnosis has been changed to PPMS

bhmomof2,

Read what you can. While it was approved, it remains iffy. met two guys with PPMS. For them, they thought they would be cured.....alas, both are now far worse than before. There really is never any guarantee for any med to work. The efficacy rates are low for DMDs. As long as you make a decision that is best for you and one for which you have been fully informed, then it is a good decision regardless of the outcome. Remember, there is no cure.
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