[Leanne]

I have MG for 32 years and still held down a job. I am 64 now and still work 4 days per week in a fairly demanding administrative job. I do get quite tired by the end of the day. I have problems now with my back, arthritis and severed my quadricep 2 years ago very suddenly. Doctors say most like like due to long term prednisone – so my mobility is not good. It’s actually not the MG that’s been the problem, it’s all the drugs and side effects that is wearing my body out.

[Leanne]

Lonely, exhausting, challenging

[Leanne]

Hi.  I havebeen having plasmapherisis fir 32 years at 6 weekly intervals.  I am on 7-1/2 mg of prendisone and have received Rituximab yearly.  I now feel I need to introduce ivig.  I now have 4 weekly plasma exchange and tire easily and very breathless.  I am goi g to discuss this with my neurologist next week.

[Leanne]

Hi.  I was on Imuran for over 30 years and was warned about the side effects.  It was great to keep my Mg under control but the later years I started getting melanomas and scc’s.  I still need to stay out of the sun as my drug therapy now and being on prednisone my immune system is depleted.  My skin now is very sensitive- especially my legs.  It’s all about quality of life and doing your own research.  Good luck.

leanne

[Leanne]

Hi.  I have had MG for 32 years and mainly under control.  I have osteoarthritis in my hands and back.  Eighteen months ago severed my right quadricep and had emergency surgery to reattach it.  It has been a long road back to learn to walk again without assistance with a stick.   i am not able to walk too far without stopping as my back hurts and my breathing has been a real problem. I have seen a respiratory specialist and he says that it is asthma.  I also think that I am very unfit as I have put on a lot of weight and my leg has out me back.  Any way I am currently taking 7-1/2 Mg of prednisone, rituximab transfusions yearly and plasmapharesis monthly.  I am going to ask my Neurologist about Ivig next appointment.  I also take bp meds, and cholesterol meds and an antidepressant as 5 years ago I had a mental breakdown.At night I take 8 Mg of compounded melatonin.  I take quite a few supplements and really unsure whether some are necessary.  Fish oil, coq10, executive b, vit d, calcium supplement, vit b3; probiotics and 6 Panadol osteo/day and aspirin.  I am seriously thinking of giving up working as lately struggling with my mental health and stress.  I would like to apply for a disability pension but believe it is really difficult and time consuming.  I miss my golf, my long walks and especially the loss of my black Labrador.