worth a try!
Hi there, Firstly sorry you too are having to battle this condition.
Secondly, i agree with Pam H in that having more outside help at this time is essential. Even if you look at the xtra help as being a temporary thing – when things pick up and stabilise the help ccan be easily stopped.
It sounds like you are both struggling sooo much with very little if any benefit, and by your comments your husbands condition sounds like it needs more aggressive treatment options to be tried.
I have had high dose methylpred (initially 3 times a week iv) and now weekly orally. The doses have varied depending on severity of relapse etc. To me it has been a life savor treatment – I am now 36, have been diagnoised for 3 yrs and initially the first year was more down than up. I deteriorated very quickly to a quadraplegic status – and just as my breathing was becoming affected we introduced iv methylpred and immunosuppressants in addition to the regular IVIG (IVIG was showing to give very little but some effect (I needed ivig 3 times a week to just hold me from deteriorating.
I had already tried normal steriods also in combination with ivig.
Once we introduced the methylpred and immunos things began to stabilise and then gradual improvement began.
Since then we have tried reducing some of the treatments and i have had one major relapse (a year ago) as we obviously reduced the methylpred too much (was at 250mg once a week iv) when i relapse we start again with a very high dose (1000mg) for 2 treatments in that week then 700mg for a ffew doses then back to 500mg weekly (again this is with immunos and regualr ivig)
everyone is soo different and unfortunately it is a matter of trial and error.
as far as side effects from methylpred – initially i had a bit of hair loss, feel very unsettled and hyperactive the day of treatment, insomnia the night of treatment and then the next day i feel like a bus has run me over – yet that is all manageable and preferable to the state i would be in without it. Takin such high doses at my age is obvioulsy not desireable and our goal is to be on as little as i need – we have just had a big 6 week trip to canada so i stayed on what we knew should hold me while away – and from next week we will try again a wee reduction – 5oomg instead of 6oom orally! yeeha. I take extra calcium and biophosphanates to help combat bone disease – although did suffer a pelvic stress fracture recently although that could have been due to tooo much running!
I have now recovered to full strength, am running regular half marathons and am currently in training for my first half ironman in 7 weeks!!!!!!!
I hope your husband finds the treatment he responds to, cytoxan would have been the next one we tried if this combo didnt work!
All the best and hope you both start to see some progress in near future.