Last Edited on 23-Jun-2009 10:05 AM

Thanks for your responses to my post. I feel that the Cellcept is working for me in the sense that my recovery strength is much better than when i was on 25 mg of Prednisolone per day. Am told that high levels of Pred can accentuate the general fatigue of MG and this with the affect its having on my bone density pushes me to get the level down. Had a consultation with the Neuro today and she advised that we will now only reduce the Prednisolone by 1 mg per six weeks. This I feel is acceptable as the other ;trigger' I have is MRSA in the blood: a result of hip replacement surgery in 2006. Have already experienced a crisis because of CRP level getting out of control. Thanks again for your response.

I want to wish you the Best.

And thank you for your kind words in your previous post.

Do let us know how the transition to cell cept goes by reducing the prednisone more gradually.

take care,

Marita

My MG drugs seem to be balanced at the moment but not coping with a rising CRP due to MRSA in my hip. Had ultra sound of hip to locate any'gunk' which there was so, now for another MRI of hip to then decide course of action to aspirate. Process further complicated by my having AF and tendency to PEs. Neuro pretty concerned about possibility of MRSA flaring and triggering another crisis. Thank God we moved from the farm and are now close to a major hospital. Air ambulances are wonderful but really frightening when you can feel your breathing fading and the thought of mid flight intubation. Apart from asll that everythings great down under!
All the Best,
John

I join the thanks for your kind words.

sorry to hear about the hard time you are having, not only with MG, but with other medical problems. what do you mean by PEs? pulmonary embolism?

I can understand the fear of mid flight intubation, or any emergency intubation for that matter.

if you are having serious, potentially life threatening respiratory episodes, I would suggest that you have a good neuromuscular pulmonologist involved in your care, who can provide you with other options and consider non-invasive ventilation under such circumstances.

there is no reason to have such fear in our era.

alice

Yes I did mean pulmonary embolism and I am on warfarin which means that to perform an aspiration of the hip I need to be hospitalised to get off warfarin, ontoheparin, have the procedure and then back onto warfarin. After the blood cultures are done it will be decided what direction to take. At this point of time there is no indication of mrsa in the bone so, hopefully only another wash out of the hip.

I have appointment with cardiologist next week and will pursue your suggestion of seeing a neuromuscular pulmonary specialist.

As we have now relocated to Melbourne, a major city, we are only 20 minutes from our treating Hospital. As such the fear level is very much reduced!

Many thanks for your comments and all the Best.

John.

are you being hospitalized for the heparin, or for the procedure? because if the procedure does not require hospitalization, why not consider LMWH, such as enoxaprin instead?

I would also recomend that this entire "bridging" with heparin procedure would be supervised by a hematologist, as I have personally seen quite a few management errors done when this is not the case.

there is a "curse" in the tedency for more and more specialization in medicine, which leads to "fragmentation" of the patient to scattered puzzle pieces at times, but also a "blessing" when you have physicians that are highly experienced and knowledgable in a certain aspect. and as a patient- why not take full advantage of that?

glad to hear that you are near your hospital. sounds quite scary to live so far, when you have significant medical problems.

alice

It must be more comforting to be closer to the hospital. Although you must be missing life on the farm.

Best of luck with the procedure. I hope that you feel better soon. Keep us posted.

Marita

I'm being hospitalised for the procedure. My neuro, ID and ortho specialists are keen to have the 'bridging'supervised. Expect that ID will be useing hematologists to follow the changeover.

Thnks again and all the best,

John

alice