Cyclosporin and increased cholesterol levels

[apfaucpa]

My 15 year daughter has had Iritis since she was 3. She has had many different drug treatment plans, most which have been effective for a certain time period and then a new flare up occurs. Anyway, currently she takes cyclosporin, cellcept and prednesone eye drops (she had flare up in the summer). Her recent annual physical included a blood test for cholestrol. Her cholesterol level was 250. We thought it was a mistake so they took it again and it was 259. I believe it is partly from one of the drugs and I have seen some info on the internet about Cyclosporin elevating cholesterol levels in some patients.
My daughters pediatrician says no but my gut says her 259 is not merely from diet and genetics. Anyone else have any experience with cyclosporin?

[Mike Bartolatz]

I haven't heard of this but you could ask DR Foster his experience over the past thirty odd years of giving DMARD drugs and other classes and combinations of drugs to kids and adults. go to http://www.uveitis.org and join and then post a note to him in the ASK DR FOSTER forum there.

I am very concerned about your daughters uveitis. did they increase the cellcept with the current flare up to get her to 'off all steroids without inflammation'?
any talk of going the cellcept Remicade combination instead of the cyclosporine?

I'll get Renee' to greet you. her daughter Alex now 15 has had three vitrectomies and just about every combination of immunomoduation imaginable and is now off all oral meds and only on the NSAID eyedrop XIbrom to make sure that Cystoid Macular Edema doesn't rear it's ugly head anymore for her.

Wishing you the very best,
MIke

[Mike Bartolatz]

I'm linking this thread to the Parent's Forum.\

mike

[Mike Bartolatz]

It is the Cyclosporine causing the mischief and is why the cholesterol as well as BUN and Creatine have to be monitored.

mike

[Mike Bartolatz]

I noticed in your profile that you have seen DR Foster in Cambridge. Can you contact him directly, not in the ask Dr Foster forum so that he can guide you directly getting your daughter to 'off all steroids without inflammation?'

[apfaucpa]

I will contact Dr. Foster to hear what his opinion is regarding both the elevated cholesterol and the alternative treatment plans if we have to eliminate cyclsporin. My daughter has not had Remacaid. Before Cellcept she had success with the combination of cyclosporin and methatrexate. At the time her Dr was trying to get her free of inflammation for a year so we could taper off of everything. Upon the tapering off she had a flare up in both eyes. Dr. Foster told us in June he now thinks we should try to get her free of inflammation for 2 years before beginning a tapering off process. She was on both cellcept and Cyclosporin when she had the flare up in June so we had to go back to the eye drops regularly. Now she is calm again and tapering off the prednisone drops but we have no current time table to eliminate the cellcept or the cyclosporin but if the cholesterol issue is real we may have to try something else. One thing I have learned from this condition-there is no one direct treatment path that is the same for all so you must keep trying till you reach the promised land.
Thank you for your speedy reply. I will post a follow up after I speak to Dr. Foster.

[Mike Bartolatz]

my info regarding the cholesterol reading is from a direct question that privately posed to Dr Foster last night.
please keep Dr Foster in teh Loop with all things regarding your daughter. that's why he gave you his card with his email address on it. DR Foster is remarkable in his caring for all of his patients but especially for the kids with uveitis.
if you have lost his card, his website has it so that you can ask questions directly of him at any time. he doesn't consider any question too trival bye the way..
I wish the new form of cyclosporine were available to use. the molecule is much smaller and can enter the eye allot easier, it is called Luveniq.
Dr Foster has indicated that the amount of time it takes to retrain the immune system to stop attacking the eye is TWO YEARS. he wrote the book on Immunomodulation. the latest research on possible links to cancer indicate the odds are extremely low for DMARD drugs. it is a concern with the ANTI TNF-A DRUGS.
I placed the abstract on this in a sticky note at the beginning of this forum. it is a multi site analysis sponsored by the National eye institute here in the USA.
what is appropriate for your daughter has to be determined by YOU and the Specialist. DR Foster is the BEST at figuring this stuff out.

Hugs to your daughter,
thanks for going for the best care available for her, ( I was sixteen when I came down with iritis back in1965 and only steroid was available)
mike


mike

[rtaunton]

I know that when my daughter was on it, that Dr. Foster told me to watch her cholesterol intake. I'm glad you already have Dr. Foster in the loop. You're right, not one recipe works well for any given person, but thank goodness there are a lot to choose from.

Hang in there,
Renee'

[apfaucpa]

My wife called Dr. Foster's office yesterday. He said that Cyclosporin can cause an increase in cholesterol levels in some patients. However, he thought that since the drug appears to be working positively in terms of controlling her inflammation, it was the lesser of two evils. He recommended staying the course and taking a statin to control the elevated cholesterol. To me, since we hope to get my daughter off everything in the next 20-24 months, we stay the course.
We will go to see another Dr. suggested by our internist to control the cholesterol.
Thank you for your feedback. I will post and check this board more often.

[Mike Bartolatz]

I so hope that your daughter can achieve durable remission within the next two years. often the journey is for a much longer period of time when this stuff is in pre tenage kids.
Please keep us posted on your daughters journey. and, once again thank you for caring so much for your child to get the very best possible care for her,

Wishing you the very best,
Mike