I am so sorry to hear that news - I am not surprised how terrible you must be feeling at the moment. Having achieved a goal like this it is a real downer to have to slide back again - as well as a very unpleasant experience of course!
This is a really unusual event - reactions during the build whilst rare are much more typical but not really on maintenance. Your consultant is definitely right to consider a reduced dosage next month and then to slowly build up to the full dose again as though you were on the old build up regime. It would also be safer I think to split the doses and leave the ALK approved 30 minutes between them as you build up. I have been doing this for the last three years and whilst it means twice as many jabs it is well worth the effort. It is also worth thinking about going for two 50 mg injections as the target - again this is suggested for patients with a record of severe reactions to the treatment.
Finally, if you don't do it already you should ask your consultant whether or not you should take some anti-histamines before hand. There is some debate about this but the general consensus is that this is well worth doing.
It is such a blow when something like this happens but I am just so glad that you are even considering going back as I know how difficult it must be for you.
All my sympathy,
David
----- Original Message -----
Sent: Thursday, March 15, 2007 2:36 PM
Subject: [insectstings] Big Set Back
Hi Guys,
Had a bit of a bad day yesterday.
After having been on maintenance for over a year (albeit on split
doses initially, then moving up to a full single dose for the last 4
months), I was not expecting anything unusual yesterday. However, 3
minutes after the jab, I had a severe reaction (blood presure through
the floor, struggling to breath, nausia, tight chest and apparently I
turned bright red) which resulted in the use of an epipen, amongst
other stuff, and lots of panicked activity on the ward. I have had
several mild reactions during the initiation and early parts of the
maintenance stages, but I have had no reactions at all for several
months now, so this came as a huge shock and a big dissappointment.
My Consultant (who was immediately consulted) thinks I should take a
reduced dose next month and if that is OK, then all my jabs from here
on should be split, so quite a set-back really.
But what caused it? There seems to be no clear explanation.
I guess that the one good thing that came out of it is that the least
traumatic experience of the whole thing was the use of the epipen; so
I will have no qualms using one in the future if the need ever arises.
Hope you are all well.
Chris
(Feeling a little battered and subdued)
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