I have been dx with Mg for 2 years now. I have severe difficulty swallowing and chewing and get exhausted at meals. My speech is impaired and my voice gets so low that my husband cannot understand me. I have had 6 mo's treatment with IGIV with no improvement. I was on Imuran for 3 weeks and it made my blood levels way too low so off i came. the Mestonin helps sometimes. I am on prednisone 15 mg one day 10 the next. the dr is trying to decrease it because of huge weight gains. I also have fibromyalgia for which i take Lyrica .I have osteoarthritis too and suffer from chronic pain also from neuropathy . I suffer from depression also (not surprising ). I was just put on Cellcept and want to know if anyone have had improvement or is there something else that might help. Thanks so much..wishing you all a prolonged period of remission...
Hello CG. I was on cell cept for a period of time for polymyositis, many similar symptoms as yours. It is off label use as an anti inflammatory med. it is expensive so if cost is an issue, the company will give it to you. If you are on Medicare for disability you have the copay.
The doc thought within a week it would show signs of improvement. The IVIG I have had is usually done every four to six weeks depending on dose. Since that has not done well for you, I hope the cellcept does. I was finally moved to tacrolimus for anti inflammatory. It has helped though I am still on prednisone. The others only worked a short time. Also Rituxan and a bunch of others.
The weight gain from prednisone is a private battle. It can make you very hungry at one dose and then at other doses you don't want to eat. So I have been very careful with my diet and weight has been stable for seven years. I treat food as medicine. Of course the diabetes you get from the prednisone is part of controlling the food intake. You are on insulin or medication for that?
Wondering if you have seen an ENT for the throat and if they have any ideas for you. My voice became very deep and hard to understand too and they ended up using Botox in the vocal chords. Got my voice back. However, I have been spared the swallowing problem, so perhaps it will not help you. like I said, similar disease.
I get lots of flareups so I take life as it comes. neuropathy, not too bad, slowly gets worse. Prednisone acts as a pain killer for the inflammatory part. I feel worse when I am below 20mg. Depression too.
Sorry you are dealing with this. Miracles of drugs keep us going. They may not be pleasant, but it is what we have. Wishing you a long remission period and freedom from pain. Write me anytime. Karen
- CellCept Information for Consumers
- CellCept Information for Healthcare Professionals (includes dosage details)
- Side Effects of CellCept (detailed)
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