Will my Ruxience and octigam infusion a work if I stop taking my oral

Hi @zeedee1. Each of the medications you’re taking have their own purpose. The Ruxience (Rituximab) and Brukinsa would be the actual treatments for your WM. The Octigam is an infusion to help keep your immune system supported and the dexa is a steroid treatment to lower inflammation.

Your doctor may feel that taking a break from Brukinsa and Dexa is important at this time, especially if you’re having some bad reactions to those particular meds. I’m sure you’ll still be having regular blood work, so your doctor will keep an eye on those labs for any changes. In the meantime, it will be a nice to have some relief to the side effects you were having. How were you able to pinpoint that it was the Brukinsa and Dexamethasone which were causing issues? What were your symptoms?

Extreme diarrhea from Brukinsa and total insomnia from the dexamethosone.

With side effects like that, taking a break from those meds will be a huge relief! I hope you feel better soon!

Thank you so much for always being there ❤️

My insurance will not cover my Octigam
This new year and I can’t find a foundation to help it was working on keeping my off at an ok level. When. I stop taking it will my immune system
Get weaker? Waldenstroms relapse?

@zeedee1 This is tragic to not be able to get the medication that is working for you! Have you asked your oncologist to write a narrative to your insurance provider? Sometimes that can be helpful.

I did. Not sure if he has. The insurance co recommended Gamunex-c injection solution. Not sure he agrees.

@zeedee1, I understood the comment to mean your insurance wasn’t going to pay for IVIG treatments at all, which could have been a real setback for you.
From a quick quick search on Drugs.com, Gamunex-C is similar to Octimag though not identical. The cost isn’t much in difference. Here’s the results of my search: https://www.drugs.com/compare/gamunex-c-vs-octagam

Since your doctor chose Octimag for your treatment he may have felt this was the better option for your case. So it wouldn’t hurt for you to give his office a call and speak to his NP to let them know insurance has denied the continuation of Octimag. Often they will go to bat for you by writing a narrative to the insurance company. I’ve had that happen a few times myself. And it has worked. Some meds are not ‘one size fits all’ and our doctors have reasons for their decisions so their input can make the difference.

I think it’s worth a try since you’ve had a complicated history with some medications. Octimag has been working so you’re concerned about rocking the boat by changing. Have you called the oncology office?

I have. I also brought the letter there. Haven’t heard back yet. Don’t want to bother them too much😒

Oh my dear @zeedee1. That’s the wrong attitude. ☺️ This is about your health and you do not have to feel timid about ‘bothering your doctor’s office’ with questions. Especially about making sure you’re able to get a continuance of a medication that has been working for you. Or, even clarification that switching to another similar med is ok.
I know from experience in the bustling dental clinic where I worked, even the best-laid plans of following through immediatly with a patient request or a detail in a phone message can get sidetracked so easily.
There is no harm in making another call to your doctor’s office just to nudge or remind them that this is a timely issue regarding your med and you need some guidance. At that time, also ask for a callback from the nurse practitioner for verification. That usually works pretty well!
That’s all there is to it. No apology needed. Remember the old axiom?? The squeaky wheel gets the grease? LOL