[cmfinnis]

Hi,

I just thought I'd write down a bit what's been going on with me, as I know what a lovely supportive bunch you are and just need a bit of a hug!

I've had a horrible nasty ol' flare up of the lupus and been in hospital best part of the last two weeks, came out yesterday. I get this peritonitis, inflammation of bowel, bladder, kidney lining you name it and it's agony. I had the 3 pulses of the methyl prednisilone iv and am now waiting for an appt tommies to get the IVIG to try to put the lupus into some kind of remission. This is my second big flare in a few months - last one in March was 10 days in tommies and 3 pulses later . . . ..

What's really worrying me is that I'm also losing the 'feeling' in my bladder with all this scary pain. And this attack came out of the blue - I was fine one minute in a shop, the very next minute in the most worst pain of my life (again!) and could not stand up for the pain. The hospital say it's peritonits - but inflammatory rather than infection. Once I had it, they took out my appendix by mistake. At least I know what it is now but it's bit scary. It sort of makes me bit nervous thinking about it, especially the no warning of it coming on aspect. Usually I get some warning but not this time!

Has anyone had IVIG? Please tell me about it. I'm terrified of it as I had it once before and had a nasty reaction but the docs say it's pretty much my only option as I already had an immune deficieny so I'm not allowed cyclophoshamide or rituximab.

Cathy x

 

[KarolH]

Cathy,

First I would like to say I am glad your home now. I am sorry this landed you in the hospital. Sounds like your Lupus is really rearing it's ugly head.

I am new to Lupus, only 2 weeks but for the last 3+ years I had the dx of MS.

I had IVIG given to me and the side effects almost landed me in the hospital but I later found out that the idiot of a Neurologist I had prescribed too much for my body weight and basically I was over dosed on it.

I have some friends with MS who have had IVIG and in the right doses they had no problems at all.

I do wish you luck with your up coming treatment. I also have bladder issues and other things but my Lupus has really attacked my CNS.

I hope your on the mend.:wink2::wink2::wink2:

 

[granny weatherwax]

((((((Cathy))))))

Am so sorry you are having such a hard time at the moment.:hug:

I cannot begin to imagine how you feel, my flares seem to just hit my joints so I feel quite lucky really.

I shall be thinking of you and hope that your appt at tommies goes well. Please keep us informed as I am sure you will be in all out thoughts and and best wishes for a speedy recovery.

Please take care of yourself and good luck

Claire xxxxx

 

[Zoi]

Ooooh ((((((((((Cathy)))))))))))))) :hugbetter:

I'm so sorry to hear you had to be in hospital once more.... How very scary for you that the peritonitis came so suddenly and without warning...

Hope everything goes extra smoothly with the ivig for you :bigsmile:

Sending loads and loads of healing thoughts and hugs your way and I hope you feel much better very soon :grhug::grouphug2::hug:

:foryou:

Zoi

 

[lazylegs]

Hi Cathy,

What a nasty turn of events. I hope the IVIG works for you. Please keep us posted on how you are doing.

Will you still be going to the Uni?

Take care,
Lazylegs

 

[Katharine]

Hi Cathy,

I'm sorry to hear you've had two such big flares so close together. I really hope that the IVIG does work for you and calms things down.

I don't have any experience of IVIG but can send loads of hugs, healing thoughts, chocolates......

:grouphug2:
Katharine

 

[Mrs M]

Hi Cathy

Just wanted to say that am sorry you've had such an horrid time and that I hope things begin to improve for you.

I'm not diagnosed but going through many tests so don't fully understand things yet:hehe: but it seems that the IVIG is a little worrying for you. I hope that things work out for you and you feel much better real soon.

:hug:


Take care

Mrs M x

 

[LolaLola]

Hello I have no experience of IVIG, but I wish you all the best.
I can see that getting the pain so suddenly and dramatically would really knock your confidence. Well done for not being a total nervous wreck at the moment.
I have had some long stays in Tommies. I found the best way to survive it was to befriend the Porters, I wasn't very mobile and it was great to have their help, even to the extent of posting letters etc.

X Lola

 

[Joandublin]

Hi Cathy

Im really sorry to hear about your experience. It sounds absolutely horrible and so painful :hugbetter:

I was just concerned that you had no direct replies regarding your upcoming IVIG treatment and I think you should put a separate post under Medications asking about this specifically. Make the title relevant to your question e.g. 'Anyone with experience of IVIG' or something like that.

Sometimes members might pop in and out and skim through post titles and if the title is relevant they will read it and hopefully reply. Your query on IVIG might not be getting the right attention. Its worth a try!

Lots of love
Joan:rose:

 

[Clare.T]

Dear Cathy

I am very sorry you have had this awful turn of events, plus the shockingly poor hospital experience. It certainly is very scary to have a sudden attack outside.
There are very few people either here or in the USA who have had IVIG because it is so expensive and there's the usual cost /benefit consideration but I have heard of some people who have enormously benefited.

I hope that it will bring you great relief. No personal experience to share and only two shoulders, but plenty of caring hugs.
I've put a post on Medications for you

The very best of luck to you

Clare

 

[Zoi]

Hey Cathy!

I posted before but didn't include my experience with ivig as I don't think it's representative of most peoples' experience with the drug. I was given IVIG last September during the plasmapheresis/cytoxan/iv pred thing and I proved to be allergic to it so the infusion had to be stopped. Now, when I say I was allergic to it I mean I had a slight difficulty breathing and broke out in a rash but had nothing like rituxan's anaphylactic reactions. The doc told me that it's incredibly rare for patients to be allergic to ivig and that if it was his first line of treatment (the plasmapheresis and other stuff were his first line of treatment at that point) he would give me antihistamines iv and try again as he thought that might make the allergic reaction go away.

Hope you feel better soon!

Zoi

 

[JudifJ]

Hi Cathy

Hello from Southwest Kent! I'm so sorry you are having such a flare at the moment. I don't have any experience of this IVIG, only having had prednisilone in the past, but I send you lots of love and gentle hugs and pray that you get your treatment soonest.

Take care

Judi xx

 

[cmfinnis]

Hi

Thank you so much for all your lovely replies and thank you Clare for putting a new post for me under medications. I really appreciate that.

I had ivig once before in 2006 and it really helped but when I came to have it again I had a really scary reaction which has left me terrified of the stuff. I'm also bit concerned as i know it's a blood product etc, and wondered what other people had been told about it and lupus etc.

I need it for the CVID and lupus, so I guess I get it as I have '2 reasons' for it. This is my understanding anyway.

Thank you for all your support, It really means such a lot!

Cathy x