I was diagnosed with Sjogrens about six years ago. My symptons have progressed and for the last few years I have struggled with neuropathy in my feet and legs . It seems to be spreading to my upper body also. Walking is difficult and climbing stairs is getting to be almost impossible. My doctor wants to put me on high levels of Cellcept . I'm quite sensitive to med's and am really struggling as to what to do. I'm pretty much a naturalist and don't like taking a lot of med's.. I'm on Plaquenol but I really don't know if it helps. Does anyone have these same issues and if you do has anything helped you?
Hi Phoebe, Good to hear from you but I am sorry to hear you are struggling. I am facing assessments for neuropathy now too as my symptoms are getting to be a real nuisance and my doc wants to get a grip on exactly how progressed my SS is. Mine seems to be manifesting differently from yours at the moment but not by much. I am on Plaquenil but the way my rheumy explained it was that it is meant to reduce pain and fatigue but it is not the end all be all for SS. (he said that for Lupus it can be a lifesaver but it is more a starting place for SS, since it is well known and generally well tolerated). He said that if there is neuropathy we would most likely add something else to the mix or replace Plaquenil completely. He mentioned a drug other than Cellcept but I will keep you updated on where that goes. Oddly enough massages help relieve my symptoms a great bit….though it may only last a little while, any relief is worth it.
I have heard a few members here mention Cellcept with mixed reviews. I am sure they will share their experiences directly with you. I understand and agree that I hate the levels of chemicals I am on, but sometimes its just plain necessary. My best advice is to always ask tons of questions. And ask more than one doc…primary, rheumy, eye doc etc…as some explain things differently from others and often one mentions something another left out. It has helped me a great deal to do that. I do hope you find the path that works best for you.
EnjoyLife said:
Hi Phoebe, Good to hear from you but I am sorry to hear you are struggling. I am facing assessments for neuropathy now too as my symptoms are getting to be a real nuisance and my doc wants to get a grip on exactly how progressed my SS is. Mine seems to be manifesting differently from yours at the moment but not by much. I am on Plaquenil but the way my rheumy explained it was that it is meant to reduce pain and fatigue but it is not the end all be all for SS. (he said that for Lupus it can be a lifesaver but it is more a starting place for SS, since it is well known and generally well tolerated). He said that if there is neuropathy we would most likely add something else to the mix or replace Plaquenil completely. He mentioned a drug other than Cellcept but I will keep you updated on where that goes. Oddly enough massages help relieve my symptoms a great bit….though it may only last a little while, any relief is worth it.
I have heard a few members here mention Cellcept with mixed reviews. I am sure they will share their experiences directly with you. I understand and agree that I hate the levels of chemicals I am on, but sometimes its just plain necessary. My best advice is to always ask tons of questions. And ask more than one doc…primary, rheumy, eye doc etc…as some explain things differently from others and often one mentions something another left out. It has helped me a great deal to do that. I do hope you find the path that works best for you.
Phoebe said: Thank you for the information, I see a new doctor next week so I'll do as you said and ask a lot of questions. I started school recently and I don't want to be sick from new med's. It's great to be able to talk to others that understand, thank you so much! Have a great night!
EnjoyLife said:Hi Phoebe, Good to hear from you but I am sorry to hear you are struggling. I am facing assessments for neuropathy now too as my symptoms are getting to be a real nuisance and my doc wants to get a grip on exactly how progressed my SS is. Mine seems to be manifesting differently from yours at the moment but not by much. I am on Plaquenil but the way my rheumy explained it was that it is meant to reduce pain and fatigue but it is not the end all be all for SS. (he said that for Lupus it can be a lifesaver but it is more a starting place for SS, since it is well known and generally well tolerated). He said that if there is neuropathy we would most likely add something else to the mix or replace Plaquenil completely. He mentioned a drug other than Cellcept but I will keep you updated on where that goes. Oddly enough massages help relieve my symptoms a great bit….though it may only last a little while, any relief is worth it.
I have heard a few members here mention Cellcept with mixed reviews. I am sure they will share their experiences directly with you. I understand and agree that I hate the levels of chemicals I am on, but sometimes its just plain necessary. My best advice is to always ask tons of questions. And ask more than one doc…primary, rheumy, eye doc etc…as some explain things differently from others and often one mentions something another left out. It has helped me a great deal to do that. I do hope you find the path that works best for you.
Hi Phoebe,
I struggle with some neuropathy/neuropathic pain, but most of mine is from degenerative arthritis. I have damaged joints, collapsed discs and all kind of spinal challenges.
I took Enbrel for about 2 years, but it left me open to too many infections, so I just mailed in the script for Plaquinil. I fully realize that it will take months before I can expect to notice any change, but am ever hopeful.
My Rheumatologist told me that sometimes you just never realize how much a med is helping until you discontinue it!
I have never taken Cellcept, so I am no help there, but hopefully others can comment.
I hope that you can get some answers and some relief!
Thank you for your response. I am leary of taking many med's, it also took me awhile to decide to take Plaquinol but I've been on it now about two years. I had no side effects but I have gained some weight(not sure if that is a side effect) so I would feel confident in taking it. I like your doctor agree that I probably don't realize how much it helps,but I don't want to take the chance to see how I would be without it. I do notice I have a bit more energy though. Good luck hope it helps.
SK said:
Hi Phoebe,
I struggle with some neuropathy/neuropathic pain, but most of mine is from degenerative arthritis. I have damaged joints, collapsed discs and all kind of spinal challenges.
I took Enbrel for about 2 years, but it left me open to too many infections, so I just mailed in the script for Plaquinil. I fully realize that it will take months before I can expect to notice any change, but am ever hopeful.
My Rheumatologist told me that sometimes you just never realize how much a med is helping until you discontinue it!
I have never taken Cellcept, so I am no help there, but hopefully others can comment.
I hope that you can get some answers and some relief!
Phoebe, I just went to the new superstar Retina Specialist in town to get cleared for taking Plaquinil, and he told me, that it is new and improved and MUCH less harmful to the eyes, said I could take it for 5 years before needing to revisit him. So this is big news considering my GP and Rheum told me I''d need to be checked by the eye specialist every 6 months! This saves us 12 visits to a specialist! I'm impressed!
Thanks for the info, just went to the eye doctor for my 6 month check up and haven't heard about Plaquinil changing. Does it apply to the generic also?
SK said:
Phoebe, I just went to the new superstar Retina Specialist in town to get cleared for taking Plaquinil, and he told me, that it is new and improved and MUCH less harmful to the eyes, said I could take it for 5 years before needing to revisit him. So this is big news considering my GP and Rheum told me I''d need to be checked by the eye specialist every 6 months! This saves us 12 visits to a specialist! I'm impressed!
I don't know for sure, but I will suspect this will be what I'm getting, as he always signs off for the generic! We can only hope!
BTW, he said my retinas were in great shape, good to know something on my body is!
Great to know thanks ,my eyes were well also. Like you that's about the only thing that's good on me too. have a good day!