Has anyone been on CellCept for a period of 8 or more years? I noticed a couple of months ago that a 3 to 4 in long and finger width lump has appeared on the top of my scalp. I've always had headaches, but they seem to be increasing w/weird burning and tightness mild ache in the area of bump. I've had to have a cyst removed from scalp and Sternum area one other time, way before Lupus diagnosis but feel pretty paralyzed to go to dr about it since CellCept can produce a deadly brain infection. Should I just ignore it as a cyst? This is much harder then the cyst was.
I would definitely get it checked as soon as possible. Health always comes first! I've been on Cellcept for 10 years but have not experienced anything like that. Take care!
Yes, I have the hard lumps on my scalp. Just as u described. The seem to get bigger when I have a bad cycle of lupus (flares, pain-etc.) & then they go down. Never go away, but do go down & so does the pain of touching them.
I have decreased almost all of my drugs & honestly---have had longer days of feeling better. Take a lot of Vit. D3 & flaxoil.
Thank you for your post. I had forgotten to mention the changes in size. You hit the nail on the head. I was wondering if you have mentioned it to the dr and what their response was.
Did you decrease meds on your own? I’ve tried and had negative results with my kidney involvement. I do the vitD as well. Make smoothies and juice with flax seed and nutrient extracting.
I Am low on vit. B, D and anemic. This heat is horrible for me. I feel like a hermit crab in my house during the hottest parts of this heat wave.
I am glad I can help. I have gone through sooooooooooo much with this fregin illness & I know we ALL wish we never had it---------
My entire life changed after I found out. Losing my Pilot's license was the worst----------well, not really the worst-----but it was up in the top ten.
What I am going to say may sound odd, silly or "something", but I want to tell u the truth in hopes this will help---even more.
I got sick of Doctors & stopped going. Got sick of the meds & the side affects.......
I got off them by my self. I even slowly withdrew my heart meds......
I pray ALOT..........
I now believe I came down with this illness for a reason----as difficult at it is-----AND YES---the Sun & heat REALLY makes me ill----------, but I pray through it. I pray through the pain.......
It REALLY------------REALLY---is working better than any drug...............In the past, I would roll my eyes at someone saying something like this--------so this is a biggie for me!!!!!
Oh------I take B12 shots every three days------it really helps
Peg said:
Hi Dudom-
I am glad I can help. I have gone through sooooooooooo much with this fregin illness & I know we ALL wish we never had it---------
My entire life changed after I found out. Losing my Pilot's license was the worst----------well, not really the worst-----but it was up in the top ten.
What I am going to say may sound odd, silly or "something", but I want to tell u the truth in hopes this will help---even more.
I got sick of Doctors & stopped going. Got sick of the meds & the side affects.......
I got off them by my self. I even slowly withdrew my heart meds......
I pray ALOT..........
I now believe I came down with this illness for a reason----as difficult at it is-----AND YES---the Sun & heat REALLY makes me ill----------, but I pray through it. I pray through the pain.......
It REALLY------------REALLY---is working better than any drug...............In the past, I would roll my eyes at someone saying something like this--------so this is a biggie for me!!!!!
Peg, I’m sorry I forgot to introduce myself … my name is Donna,
By no means does depending on your faith, prayer and God sound silly or odd to me. I know first hand how important those are to me and that there is a reason for everything. I believe you speaking the truth, sharing it and responding to me was ordained. I rely on prayer & God much more then before I was diagnosed. I’ve learned to die to myself in so many ways. I had to learn to die to my need for perfection and so many other things.
I too am sick to death of the drs. It’s getting to the point I feel they are rolling dice and taking guesses. I realize that every minute and hour or days that I am able to be productive is strength of the spirit working through me, because if I went only on my physical feelings…I would never get out of bed. That will sound odd or weird to many. But, it has become my truth
Thank you!!!
Peg and Donna, I so wish that we could get together for tea. I would love to fellowship with you. I feel that you are right on track regarding your view of this chronic disease. All things for a purpose.
So much better to know your name. I am very glad u wrote what u did. I thought u may have felt I was too much of a "preacher" than a realist. Stating God's word & feeling to share---has become my life now & for this reason alone-----if it took this illness for me to understand, than so be it.
It certainly does not make the journey any easier. It does not make the physical pain any less----in fact, at times--I wish I could take a million drugs to just escape the awful pain, but I am not hearing this from God. I do believe I will get well & so will u........
Thank u for sharing your truth..........It is mine, as well. So glad we can share it with each other!!
Dvdom3 said:
Peg, I'm sorry I forgot to introduce myself ... my name is Donna,
By no means does depending on your faith, prayer and God sound silly or odd to me. I know first hand how important those are to me and that there is a reason for everything. I believe you speaking the truth, sharing it and responding to me was ordained. I rely on prayer & God much more then before I was diagnosed. I've learned to die to myself in so many ways. I had to learn to die to my need for perfection and so many other things. I too am sick to death of the drs. It's getting to the point I feel they are rolling dice and taking guesses. I realize that every minute and hour or days that I am able to be productive is strength of the spirit working through me, because if I went only on my physical feelings....I would never get out of bed. That will sound odd or weird to many. But, it has become my truth ;) Thank you!!!!
It would be lovely to fellowship together. I live in Mass. Not sure where Donna lives, nor u.
muckyduck said:
Peg and Donna, I so wish that we could get together for tea. I would love to fellowship with you. I feel that you are right on track regarding your view of this chronic disease. All things for a purpose.
Hi Peg,
I agree with you and Muckyduck that it would be lovely to fellowship together. I’m in Ohio.
I would never think that you were preaching over being realistic. I have become very strong and bold with sharing my faith as well, so i understand you. One trait about me is that I remain ever hopeful and optimistic in the face of reality, as you do as well. I cried when reading your last post because I have struggled with just wanting it to be over, and thinking of ways it could happen, but my spirit says to continue to carry this
cross. Thank you for sharing your truth and encouraging me with more hope.
The greatest gifts Are Faith, Hope, and Love!!! And He has graciously, abundantly gifted me with all three. I’m so thankful for you and our communication.
I am Italian so you’d be getting a hug right now, LOL
Dvdom3! Hi! I just received my first rx for cellcept for my Lupus. I’m reading thru any cellcept posts I can, new and old ones. May I ask what did the limo turn out to be? Thanks for your time, God bless!
