I've been on this 9 days had a blood test, told to come off it as my liver count was low (my bloods do do this on occasion and I told the nurse this!). have bloods taken this Tues call them (Rheumy helpline) wed (yesterday) as instructed, to be told that the would have to get a doctor to look at my bloods as my platelets are low! Doh that's what SLE does!!!! My bloods are notorious for not showing what I am feeling but the nurse wasn't interested in that at all.
Rant over - I'm not happy the hassle and stress of them not knowing anything on this Helpline. What's the point in a helpline if they cant help, don't listen or want to know? I realise nursing is hard work, poorly paid but I am a patient!!!!
Any other stories about this drug, the persons that should know and its usefulness or not ?
Someone make me smile..
please xxxxxxxxxxxx
Written by
kazp
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I have been on Mycophenalate 2000mg a day since January 2014 . This was after 6 months of Chemo. Took about 2-3 weeks to get used to it. Felt some nausea and the other end very strange colours and consistency. After that initial month felt totally fine. You need something to beat down your immune system. Lupus makes it go wacko and tries to kill from the inside (thats how I explain my disease to others).
In May 2015 Rheumy cut dosage in half to 1000 mg a day. So far no adverse effects. I see him in November again. He hopes to get me off this drug totally. He told me his goal was to give Lupus a "wake up call and to start behaving". His hope is stability on the meds will show Lupus what's what and my body can take over. I hope so too.
If you are newly diagnosed my prayers are with you. Advise I can give = listen to your body, you know best how it feels. Be vocal about your care, ask questions and if your doctor won't listen find one who will. On a personal note I get plenty of rest, keep warm, eat a healthy diet (and pretty much whatever else I want), have a monthly massage and take my meds as the doctor orders.
Hope you find what works for you. Lupus is the disease of a 1000 faces and no two of us are the same.
I'm well aware of the affects of lupus having lived with it so long. I agree that being vocal is vital alas I can't find anyone on this helpline to listen.
Saying that though I do have at rheumatology nurses name and she is the only one who has done as she said! On my 'hit list'.
I was put on the drug to kick lupus into touch so to speak, if I can't take it for more than a week how will I or mt consultant ever know if its working? !
I've a list of questions for the nurse.
I get tired all the time actually i wake tired and have learned to go with lupus when it shows it's ugly unpredictable self and when it's not i try my able bodied best to live my life to my max (sometimes even full power!).
Sending you lots of love and wishing you every ounce of good luck🍀🍀🍀🍀with this kaz.
For what it's worth:
Myco has helped me hugely. Am 2 years on it @ a relatively low therapeutic dose of 1000mg daily which combines v well with daily hydroxy, amitrip & 10mg pred tapers. My therapeutic daily dose of pred is looking like 5-2.5 mg. my SLE & sjogrens are sero neg, and I'm closely followed by immunology re what has turned out to be my early onset immunodeficiency (my lupus has turned out to be infant onset, and went without daily systemic treatment until nearly 5 years ago). Even when my bloods were greatly concerning my head of lupus clinic prof rheumatologist, she only asked me to pause hydroxy. Both she & the big brains at immunology say there is no way my immunosuppression will stop due to my low immunology bloods results (lymphocytes & Igs). Instead, I'm back on hydroxy, and being closely monitored by both clinics. My understanding is that the only likely change in my basic lupus treatment plan would be going onto IVIg infusions.
Our specialist lupus nurse is fab, and always talks over anything I contact her about with our head of clinic. I'm acknowledged as a complex patient and my case is considered individually, rather than simply in comparison to average lupus patients. As I understand it, the aim is to keep me on a cocktail of low dose meds which spares me high dose daily exposure to any one particular type of pharmaceutical (of course, am also on a long list of daily topicals etc thanks to my heap of good treatment plans from a load of other clinics...gyn, eyes, ENT etc etc)
Your contributions here on forum are always highly informed, considered and hugely helpful...the situation you're in now is requiring you to summon up all your experience & skills as your own patient advocate. I only have a pinch of experience compared to you, but were I in your position, I'd be doing exactly what you're implying in your reply to Abby: eg telling the clinic 'help team' that:
your many years managing your individual version of lupus effectively with the help of dr X (the top consultant) mean you're a highly experienced advanced patient who appreciates that it's crucial you are seen by this head consultant now regarding this particular issue because you're both fully invested in this myco trial and only just embarking on this important initiative...and these characteristic blood results need to be closely considered in the light of your consistent trends, rather than relative to average patient statistics
Thanks what refreshing reading. Yeah I know what my body can and can't do not them. I'll be calling the nurse again today, the bit well and truly in my teeth!
They seem to rely too much on my blood test results and knowing my bloods all the tests over the years my Bloods are notoriously not going along with what I feel!
Sorry to read your having problems with Myco. Your blood readings must be a worry because usually the doctors look at readings taken 2-3 months to see a trend before acting. Also I wouldn't have thought Myco is the cause as it can take up to 3 months to work!.
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