1. < Autoimmune Diseases

CellCept

Posted by pamelalaa @pamelalaa, Jul 31 12:24pm

I have a very complex situation but really wondering if anyone can share their experience using this drug. I’m dx’d with multiple autoimmune diseases and maybe a paranroplastic syndrome. Lots of trouble getting care but hopefully on the right track to stabilize for some surgery. This med is being suggested in lieu of IVIG which Medicare wouldn’t cover. Would love to hear about any first hand experiences with CellCept.

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renm | @renm | Aug 14 8:10pm
In reply to @lilbit15 "Hi! I've been on CellCept for 8 years and it's been great! Started on it to..." + (show)
@lilbit15

Hi! I've been on CellCept for 8 years and it's been great! Started on it to help with my Cryptogenic Organizing Pneumonia, which it did, but took a while. I started noticing improvement then in my mobility. I also have multiple autoimmune, interconnected tissue disease DX's. Just to check to see if it really was the CellCept that helped with my mobility, I went off of it for 3 weeks with my Rheumatologist'approval. My mobility decreased significantly so back on I went. It has been good for me. 🙂

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I’ve taken Cellcept for 7 years. It does cause reflux for me so I take Prevacid. I also take 5 mg of prednisone. Both have been bad for my bones as I now have osteoporosis. I have ILD as well as a few other autoimmune dx. , so I will be on these drugs forever, unless something else comes along,

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wcburns2 | @wcburns2 | Aug 15 3:03pm

Hi pamelalaa

I’ve been taking it for two years to treat Cicatricial Pemphigoid, an autoimmune disease affecting my cornea. No problems from the drug for me and it does seem to keep the pemphigoid under control.

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pamelalaa | @pamelalaa | Aug 16 12:01pm

This is all so reassuring :). Thank you and glad you’re doing well!

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rashida | @rashida | Aug 17 12:20pm
In reply to @jimc3 "I have been taking. 2000ng for several years. No side effects noted and effective for generalized..." + (show)
@jimc3

I have been taking. 2000ng for several years. No side effects noted and effective for generalized MG.

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@jmc3 - what is MG? Initialled names are like a foreign language for me!

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2 replies
degarden_girl | @degarden_girl | Aug 18 9:59am
In reply to @rashida "@jmc3 - what is MG? Initialled names are like a foreign language for me!" + (show)
@rashida

@jmc3 - what is MG? Initialled names are like a foreign language for me!

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I believe MG refers to Myasthenia Gravis.

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jimc3 | @jimc3 | Aug 19 6:57am
In reply to @rashida "@jmc3 - what is MG? Initialled names are like a foreign language for me!" + (show)
@rashida

@jmc3 - what is MG? Initialled names are like a foreign language for me!

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MG = Myasthenia gravis

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kerriihart | @kerriihart | Aug 28 9:13pm

Horrible side effects, absolutely no response to treatment to lower extremely high SED rate. Primary and my new Rheumatologist said they would have NEVER prescribed for auto immune disease. Good luck!

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2 replies
pamelalaa | @pamelalaa | Aug 28 10:31pm
In reply to @kerriihart "Horrible side effects, absolutely no response to treatment to lower extremely high SED rate. Primary and..." + (show)
@kerriihart

Horrible side effects, absolutely no response to treatment to lower extremely high SED rate. Primary and my new Rheumatologist said they would have NEVER prescribed for auto immune disease. Good luck!

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Could you be a little more specific about the type of side effects?

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2 replies
kerriihart | @kerriihart | Aug 29 12:25am
In reply to @pamelalaa "Could you be a little more specific about the type of side effects?" + (show)
@pamelalaa

Could you be a little more specific about the type of side effects?

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Nausea, hair loss, aches and pains, muscle weakness, general malaise, my labs started showing issues with hemoglobin , white blood cells and escalating anemia. This medication is specifically for organ transplant patients.

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1 reply
pamelalaa | @pamelalaa | Aug 29 12:28am
In reply to @kerriihart "Nausea, hair loss, aches and pains, muscle weakness, general malaise, my labs started showing issues with..." + (show)
@kerriihart

Nausea, hair loss, aches and pains, muscle weakness, general malaise, my labs started showing issues with hemoglobin , white blood cells and escalating anemia. This medication is specifically for organ transplant patients.

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Thank You.

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