Side effects???

[emsy]

Hi All

Sorry about this but I've got to have a moan!

I've been on sc Ig for 6 weeks now. Every week I tend to feel bloated on the evening following the infusion and last week was no exception and I also vomitted (I did over do things by manicly cleaning the house for a viewing as we are hoping to sell the house). I told the immunologist about it today. His reaction: "well thats not a common side effect so it must be due to something else".
My thoughts:
#1 although rare, bloating and vomitting are both on the side effects list on the SPC
#2 the product is still a "Black triangle" drug so any side effects need to be reported ESPECIALLY if its not common
#3 It cant be just a coincidence that I only get like this on infusion day

Rant over! hmph

[john]

hiya,
i've spoken to many folk about any side-effects they feel they have had and i have to say that bloating and vomiting is not one of them!
i personally take it really easy after infusing, or at least my body takes it easy, i'm usually so tired i certainly couldn't clean the house! do you think you might have overdone it physically that day?
as for the bloating, could that be a feeling of discomfort related to using your tum as the infusion site?
it probably isn't a coincidence that you had these effects. when do you next infuse - hopefully that will tell you if these are side-effects. next time try to relax afterwards!!!
take care and best of luck - john

[emsy]

yeah I definately overdid it last week which I'm sure acounted for the vomitting. To be honest, having 2 small children forbids me from taking it easy at any time so the bloating could also be due to overdoing it on infusion days. next week will be my 1st week of infusing at home. I plan to do it on an eve before bed so will be able to sleep afterwards. It will be interesting to see if that stops the bloating.....

[liz2mac]

Hi Emsy,
As you say, side effects do have to be reported. John's advice is wise and certainly if it happens again despite you're taking things easy then caution should be your watchword. In the early days of home therapy they used to issue us with adrenaline in case of bad reactions, but they stopped that as nobody ever had a serious reaction. None the less, these things should always be treated with respect. I have never done subcut, always I.V. so I have no personal experience. If you are unhappy about your reactions at your next infusion then I would suggest you consider the following ways forward. Obviously discuss it with your Immunologist and request that it is recorded as a reaction. If nobody recordssuch incidents then there is no record of them happening! Next I would consider asking if either a different product or a different method of introducuing it could be considered. The last resort is to ask for a second opinion from another Immunologist specialising in Primary Immune Deficiency. You can find a lsit of these centres on the UKPIN website.
Living with PID and treating it is enough to incorporate into our lives without being anxious about side effects when infusing. Sorry you're having this rough time. Get back too me if I can help further.
Liz.

[emsy]

Thanks Liz

The Dr I think is fairly new, he's not the one that I have been seeing over the past few years. I think this new one just happens to be in the clinic on the days that I have been having my infusions. I will bring it up with my usual immunologist when I have my next 3 monthly appointment. I also have access to the local prof who is brilliant so if it comes to it I might request to see him.

Dont get me wrong though, the bloating isn't a major problem and it tends to go by the following day, I just felt that the Dr just dismissed it which annoyed me.

Hope you are well yourself

Emsy

[liz2mac]

Hi Emma,

I'm not too bad thanks. I agree, I would have been annoyed as well. If adverse effects are dismissed withou being recorded, then they never become a recognised adverse effect! Sounds as though you've got really good support where you are, thats really good news.
Liz