The Australian Sjögren's Syndrome Association

Visited Bev again...

Visited Bev again...

A week ago she had been in hospital for a week already with the kidney failure and Lupus Nephritis diagnosis. For the first week Bev was taking so many pills each day – 28! - that her mouth and gums went blue and she developed ulcers in her mouth and blisters under her tongue. They had requested the special injections ($7,000 each) from Tasmania that the specialist said they should try but were having no luck getting authorisation to use it.

In the middle of the week after the injection drips arrived the specialist said just go ahead because she needs it.

It turns out to be - Rituximab - you can Google it or there is some info on this page ncbi.nlm.nih.gov/pmc/articl... but it is pretty out-there stuff – real sci-fi! The sort of drug they give to Chemo and AIDS patients.

It involves a 6 hour drip – and by the next morning Bev was recovering – more strength – things starting to function – and today the mouth ulcers and blisters are almost gone and she is down to 8 tablets a day and blood pressure returning to normal – better appetite and functionality all round. Still exhausted.

Now they wait and test to see what happens and she is due for the other drip injection in 2 weeks.

Don’t want to promise miracles but there is a slim possibility that hitting Bev’s system with Rituximab may positively impact her overall condition eg all her other many conditions. As you see from the info on the link... they use it for a lot of extreme conditions and the use with autoimmune conditions is only just starting – so as usual with all the things she tries - Bev feels like she is playing guinea pig.

While I was there the nurse removed the Cannula (needle in arm for drip) and then went away and left Bev to put her finger on it for a while to stop the bleeding while we were talking – but that was a bit silly because with Bev’s bent arthritic fingers it must have slipped off and she was bleeding into her lap without realising!! Crazy stuff. So the nurse finally came and there was blood everywhere (not enough to worry – but still) and they had to change the sheets. Doh. Love hospitals.

Bev sees these posts and is grateful for all your wishes.

Will advise any news.

8 Replies
oldestnewest

Sending big hug & wishing speedy recovery xxxx

1 like
Reply

Thanks for the update - delighted that they have at last found a treatment for Bev and it seems to be helping her.

But Rituximab isn’t isn’t really out there anymore! It’s used often for RA when DMARDs have failed and for Sjögren’s if Ro positive when it affects the lymph system. Weathervane who comes here gets regular infusions too for her Sjögren’s. So glad that Bev is benefiting from it - hopefully she will go from strength to strength now. X

3 likes
Reply

Hi there Bev

Great news to hear you are recovering. May it continue and you get well enough to get out of hospital and back to home. I can understand why you feel like a guinea pig. Best of luck

1 like
Reply

I hope you are beginning to feel a bit better and that you will be home again soon . I am due my 4 th rituximab infusion around new year , it has really made a huge difference to me and i am lucky not to have had any side effects. I would advise you to ask for a slow infusion as I have found it does not irritate my stomach so much and i am not so tired. Best wishes xx

3 likes
Reply

So sorry Bev that you've had to go through this but glad you are receiving a treatment that is working! I pray it continues! Your experience will help so many others here.

Best wishes for a speedy recovery that has you back home as soon as possible.

Stay strong. <3

~Hugs~

2 likes
Reply

Good luck Bev. I am pleased you are in Australia. I'm not sure if we would get anywhere near this treatment in New Zealand. Mind we have had a change of Government so you never know. I am currently trying PXP ( the purple rice compound) Its a watch this space. It has given me more energy and I am on Mannatecs Ambrotose. This has been very helpful as well. I have however now got a Thyroid disorder as well as SS and have to have the Natural Desicated Thyroid from pigs (comes from America) My system seems to reject the more conventional stuff. I am pleased that they have OK'd you to have this latest thing. It gives all the rest of us hope. You deserve every bit of help that can come your way. Good luck and many blessings.

1 like
Reply

my lupus friend has had great success with Rixi ( as she calls it ) for Lupus.

wishing Bev all the best. She is an amazing lady. and I have enjoyed her videos. they have been so helpful

1 like
Reply

Best of luck Bev. You deserve an OSCA for paving the way for the rest of us. There is so much of trial and error in this SS game. Spice

1 like
Reply

You may also like...