Hey guys! I hope this post finds all of you strong and healthy! I've missed all of you so very much!

I was in the hospital for more IV IG but it was cut short - my neuro is still arguing that it is causing my back pain.......only 3 days this time.

Anyway, for those of you that have used cyclosporine, have your bones become brittle? Now I have another break and am getting tired of it! This medicine is a real bear!

I've also experienced incredible weight gain - so much so that I now have huge stretch marks, skin that cracks, extreme fatigue, edema, dv, etc. It has been recalled and I am on my way to the Mayo for more info, but feel like the cyclosporine really screwed me up.

I am also getting a new neuro. I love the one I have but he just doesn;t understand that when I say I'm in pain, I'm in pain! I even woke up @ the hospital screaming from pain and he refused pain meds....the nurse went over his head and gave me some anyway. She is a gutsy little gal! She contacted the other dr and was given permission.

I really hope and pray that the Mayo is able to give me some answers!

Any info would be appreciated.....

Love,
Erin

Oh, Erin, I just don't know what to say.........a doctor who refuses pain meds to a sweetie like YOU?!?!?!?! I'm pretty appalled -- and will be praying HARD for you to get some answers and help, QUICKLY!!!!

Erin... I just looked up this medication.. WHY are you taking it? Just reading the following little bit worried the heck out of me...

Cyclosporine is also used to treat severe rheumatoid arthritis and a certain skin condition (severe psoriasis). Cyclosporine belongs to a class of drugs known as immunosuppressants. It works by slowing down your body's defense system (immune system) to prevent your body from rejecting a transplanted organ, further damaging your joints (in rheumatoid arthritis patients), or further damaging your skin (in psoriasis patients). For the treatment of psoriasis or arthritis, it is generally used to treat people who cannot take other medications or have not found relief from other treatments.

So you are taking this along with Pred? I am confused as to how your Neuro would do that. Maybe it is time to talk to your Dr about weaning OFF your meds slowly and than starting slowly back, one medication at a time.

Please keep us updated.

Erin,

I was happy for you going to Mayo - - but I am ecstatic that you will be seeking out a new neuro as well.

The neuro you have had all this time may have lost his perspective on your case. I get the impression that he has 'lost you' in the process of his fighting to gain control over your medical condition. Seems like he just keeps throwing more and more at it in an attempt to win over the disease - - and you, the patient, have ceased to be the top priority.

Hang in there!! You have been so strong mentally and so optimist in your outlook. I really DO feel that there will be some help for you with a new medical team.

When do you go to Mayo?

Sue

Hi Erin,

I think that it's great that you're getting another neuro.. With all of those breaks/fractures, how can he denie you pain meds.? Especially now that I've read what Joanmarie wrote about the side-effects of cyclosporine...Don't your breaks coincide with the time you started this medication? I'm sorry to say this but I've never heard of IViG causing pain (but I'm prolly missing something). It seems like the most logical answer is that the meds. which cause bone problems are.

I've never taken this med., so I can't help you in terms of experience, but I do agree that it sounds like a bear.

When I was in the hospital, my neighbour was taking prednisone for emphysema (40mgs per day for 2-years), and she broke her femur one day after getting up from her chair- right in front of me. Anyway, an endocrinologist suggested this new medication that can help rebuild bones. Maybe this can be tried if things continue, or aren't getting better.

I hope and pray that Mayo can help you get things back on track. I really think that things will get better soon for you!
Nicky

hope you feel better erin.

Hi Erin,

nice to hear from you. I'm glad you are getting another neuro, hopefully he will be more understanding.
Cant help with the cyclosporin sorry.
I hope you can get lots of answers at the Mayo.
take care
Kate

Erin,

My Dr. told me to start taking Co Q-10, so I looked it up and it spoke of it helping Cyclosporine toxicity, maybe you have too much cyclosporine in your system?

I don't know anything about that medication but I thought of you when I read about the Co Q-10 on the Mayo site. It might be worth asking your Dr. about.

Good luck sweetie.

Hi Erin
Hey it never gets any easier for you you could write a book about what you have been throu!!!!!!!!
you keep smiling and good luck
can i just let you know i'm now a grandad my granddaughter Mia Rose was born the other day ive just got to get a lot better to go and see her and i will
alan

Hi honey!
Congrats on the arrival of your beautiful little grandbaby! Now is she the lovely lass that lives in Australia?

It is funny you should mention the book thing, b/c I've had some family members who have mentioned it as well........LOL!

How are YOU feeling? Are you doing any better?

Can't wait to hear from you!

Love,
ERin