I went to see the nurse at my Rheumy Clinic this morning as I needed to have my blood tests updated and she wanted to have a chat with me. I am ready to start the above infusions and then to have it in injection form asap. I was told their could be a delay due to having a shortage of beds at the local hospital where I would need to go to have the infusions. I was also told that the clinic is doing everything they can do to get me an appointment asap.
The flare ups are really bad and the side effects from the steroids are getting worse.
Fingers crossed (painfully) I can start the infusions asap and start to reduce the steroids asap and I will be a very happy bunny as the feedback I have received so far has been all positive from various people on this web site who have been on the above infusion from just a couple of weeks and some for several years. I want to visit my family overseas but my legs and feet especially, are very swollen which as far as I know would make it difficult for me to fly.
At least I now know I have been approved for the infusion.
Thanks everyone who gave me the support and advice on Tocilzumab that I needed.
Sue x
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angel-delight
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It has been a long time coming due to the delay with the TB test failing quality assurance which is just something else that prednisilone caused. But thankfully, I am getting there.
Thank you for your reply, much appreciated and make sure you only cross your fingers gently. Sue x
Hi Sue fantastic news, I'm really pleased for you. This is why they needed to sign off the injections because of the shortages on the infusions unit. I really hope it works for you. I have found it to be really effective.
Hi I just wanted to ask you if you have looked into food triggers at all? I am a nutritional adviser and a client that I worked with recently had regular flare up rashes and temperature etc...never diagnosed as lupus, but she'd had them for over a decade. I suggested that she come off wheat and dairy along with nightshades (she was already vegetarian)...I also suggested some supplements to help with inflammation and adrenal support...she went for more than 6 months before a minor flare up (possibly diet related but not confirmed).
If you are really struggling it might be worth a try.
Thank you for your reply to my post. I have many health issues and conflict with each other when it comes to food. I do know about wheat and dairy which has been discussed with my Rheumy nurse and gp. I find certain fruit and veg cause flare ups but most of all I am having flare ups due to me having to wait so long to get back on the biologics and get off steroids. Thank you for your concern. Take care, S
Hi sue. I started the injections a month ago & feeling slightly better. I had a wait of 4 months as my local hospital didn't have the room to do the infusion. I have been on Rituximab infusion before this (given in the side of a corridor).
I hope that you get sorted soon & don't have the wait I did.
Thank you Rachel, I hope so too. This is even more reason to get the injections out there to be done at home and that would free up the bed spaces. I was told that the rep for tocli was coming for a meeting with the Consultant the next day to discuss this matter, so hopefully something will be done.
Only issue I've found in my area is that the home delivery is not up & running for this injection. Small inconvenience of picking up a months supply at a time but hopefully it's working. It's been a long, hard 14 months looking for something else that works for me. Next step is to get back to work after 8 months off 😀
Thank you Rachel, I read that someone else on here had to collect the injections monthly from the Chemist, I don't mind doing that if that is what it takes. Thank you and I hope you start to feel much much better. I had to retire last August in the hope I could work part time somewhere, I never got to that stage, hopefully if this infusion works for me then who knows what happens. I would much prefer to be able to work again.
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