Mycophenalate

[Bruffingtons2]

Has anyone been taken off Mycophenolate due to their blood test results particularly in relation to WBC and neutrophil ? Jogging along nicely and slowly increasing until series of blood test results came through.

Would be interested to know.

Keep warm and wearing some great hot and toasty slipper boots from Moshulu that keep my feet so warm and I don't work for them by the way! (Fireside 2)

Great colours and would make a nice xmas present!

Bruff

[pinkcat26]

Yes, I have, i was neutropenic after about 1 year i think. They took me off for a month and my blood improved, so they put me back on again and tested my blood and it started to go backwards again, so i was taken off it totally. I now take azothiaprene which i have been on for about 3 years with no problems

[LucyJean]

Hello there, it is quite common for people to have to come off their mycophenolate, or any of the immunosuppressant drugs that they take, because of low white cell count. The idea of these drugs is to suppress the immune system, and this is done by reducing the amount of white blood cells in your system. Scleroderma is an autoimmune condition, where your immune system becomes overactive and starts targeting your own cells rather than just foreign invaders (like bacteria and viruses). This is what then causes inflammation and the whole array of symptoms that people get. The aim of mycophenolate and other such drugs is to suppress the immune system so it can't attack you. The problem with that is that it leaves you open to infections, viruses and so on. So, there has to be a balance between wiping your immune system out completely and calming it down enough so your scleroderma is managed. This is one of the reasons why you have to have regular blood tests to keep an eye on white blood cells. There is a crucial level at which it is not safe for them to fall. You have presumably gone below this level, hence they want you to come off it.

Another reasons for regular blood tests is to check the impact on your liver, kidney, red blood cells and platelets. Many people have to stop because their liver function tests come back showing problems or because their platelets become low.

I hope that helps you to understand. They may decide to give you a break from the drug and then try to reinstate it, or they may decide to try you on something else. It depends on many factors and hopefully the Rheumatology department will be in close contact with you.

All my best

Lucy xx

[trunchalobesity]

I’ve been on the maximum dose for 10 years and my bloods are still ok. I’m monitored every 4 weeks by my GP.However, I couldn’t tolerate Azaphiaprene.

I think the tolerance level is different for different people with different drugs. In the same way the disease affects our bodies in different ways.

Thanks for the slipper advice I’m wearing a ten year old pair of trusty ugg boots I picked up duty free in Australia.

Any suggestions on outdoor short boots?

I have bought two recharging hand warmers. They have been great. I’ve now saved more than I would if I had bought disposable ones, and the environment benefits too.

You may just need a break from the drug or go back to a lower dose.

I wish you luck and best wishes x

[Sanmateogirl107]

try wild lettuce extract for pain cellcept made me sick could not take it 750mg. ebay or mt rose herbs. let me know how it works for you. love julie