cyclosporine

[Guest guest]

Hello Janet,

I don't think I am suffering any side effects... but having P and PA for so many

years I am still very fuzzy when it comes to differentiating what is normal and

not normal anymore... I never associated being tired with PA until others

mentioned it in their postings and then other 'normal PA symptoms' became

obvious to me as I became more educated on the disease. I tend to kind of 'weed

out' some feelings and put them into 'my normal catagory', this allows me to

focus on subtle side effects that I feel are more critical and need my attention

to alert my doctor(s). I do the necessary blood workups and so on, but I

honestly don't think I am suffering any side effects with Cyclosporine... I have

been on it now for 6 months or so.

#2

[Guest guest]

this question is for my fellow cyclosporine takers. last week when

my routine bloodwork came back, my bloodcount came back low. my dermie

wasn't too worried, he said to take iron, not take the neoral, and

in jan. we would redo tests. well, i went to family dr, actually his

replacement, who i will not be going to anymore, had tests done again,

plus additional tests. pernicous anemia runs in family. came back.

i am iron defecient. the reason i don't like new dr is her first

assumptions was menstrual, no uterus, so she automatically assumes

is caused by stomach or gi. wants me to get colonoscopy. will not

even entertain thought that anemia could be caused by pa. or cyclosp

my pharmacist said 1-10% of cyclo takers do develop anemia. he said

to take iron and b complex vitamins. i have learned over years,

that i do not rush to take any tests, esp at our local hospital,

lovingly called the upper valley death hosp. if i need to get colon.

i will, but not until everything else ruled out.

my question is, has anyone experienced anemia, either from cyclo.

or just from the pa. michelle, i know you have suffered so much from

this disease, have you had any anemia. i had it in 95 during bout

of reaction from plaquenil. by the way, i am showing no outward

symptons of anemia. i feel that the dr. is rushing me to take tests

that may not be needed, and i do not like to be bullied, and something

does not feel right about all this. i would appreciate any and all

suggestions and experiences. this is the first problem i have had

in years, things have been on an even keel for a while now.

thanks

susan in ohio

[Guest guest]

Hi ,

I have pernicious anemia, and I also have trouble absorbing iron in general. I

would get the tests for pernicious anemia first if it runs in your family...it

is just a blood test for the antibody. I went through the colonoscopy thing too

just to rule out anything more serious, but the pernicious anemia thing can be

serious in its own right but is easily treated with B12 shots. Like PA, its

autoimmune, and its the lining of the stomach that is attacked. The lining of

the stomach produces intrinsic factor, which you need to absorb B12, which you

need to absorb iron. Eventually, you stop producing this intrinsic factor and

then need to receive monthly B12, which in theory solves the anemia problem

becuase you can then absorb iron again.

So I know you were concerned that it may be caused by the meds, but its not

uncommon for pernicious anemia to travel with other autoimmune stuff. Also,

they should rule out celiac disease, another autoimmune thing that attacks the

intestines and prevents absorption of nutrients. That is treated with a gluten

free diet.

So sorry you have to go through this:-)