Rituximab

[gilders]

Gilders ,hope the rtx kicks in soon and your numbers start to appear normal.Do be careful tapering the pred, you don't want o get sick again

I've been on 7.5mg for a couple of weeks and I'm due to drop to 5mg on November 4th. My next drop after that isn't due until sometime next February, so I think I should be ok.

[Margaret_B]

THANKS Alysia, gilders, Birdie, Pete, Gary and Debra C. for responding to my post about Retuxamab -Medications. Your comments about Prednisone and tapering off of it really helped me! Before I read your comments, I posted a NEW THREAD under a title about Steroids. If you have the time to read the questions I included in my post, I would appreciate any other information you may want to add to what you already shared. From your comments I already KNOW I am going to INSIST that my doctor prescribe something for me other than the 20 mg. tablets I have now. I can cut them in 4 pieces (to get 5 mg doses) but I sure can't cut them any smaller than that with any accuracy! Thank you AGAIN for "being there" for me!

[Margaret_B]

Gilders,
Thanks for sharing about your remissions and relapses over the past 20 years that you have had GPA (I know most people on this site refer to it as "Wegener's", but I just cringe when I say or write the name since the guy, Wegener, was a Nazi who participated in medical experiments on human beings who were NOT voluntarily enrolled in a study! Would rather not immortalize his name by using it! Hope this comment is not so "political" that I get kicked off the Forum after only three days of being a member!).
First, BRAVO that you have learned to live with the illness for so many years! That inspires me!Second,I received Potassium in the hospital because my minerals were so messed up by the dehydration and bleeding that had happened in my body. But you are right; people like us with kidney disease due to GPA are usually put on low potassium diets. I am now on a LOW Potassium diet. Only prohibited food is bananas. A nutritionist (who accepted my insurance) gave me advice on serving size of other Potassium-rich foods. Instead of eating 1/2 of an avocado at a sitting, I eat 1/4. Instead of a whole orange, 1/2. Instead of 1 cup of oatmeal, 1/2 cup. Instead of lots of the greens and green vegetables I have eaten for years, eating only 1/2 cup servings of them and loading up on kale and cabbage when I want to eat a really big salad! Nice to know the nutritionist gave a thumbs up to foods I have avoided for years due to weight issues, like WHITE bread, WHITE rice, WHITE potatoes, WHITE noodles! Still, I should only be eating 1/2 cup servings of these foods, as well, but I AM enjoying eating them again after YEARS of eating whole grains, high-fiber foods, raw vegetables and fruits and lots of them. Most "Plant based" foods are high in Potassium.

The kidneys have to work very hard to filter out protein and cannot filter out potassium. So, I am also on a low protein diet.

For comparison's sake, my Creatinine tests every 2 weeks range between 1.11 and 1.25. I am diagnosed at Level 3a of Chronic Kidney Disease. If I can keep the strain off my kidneys by eating a low protein and low potassium diet, I hope it will help me forever avoid dialysis treatments.

Thanks for the warm welcome, everyone!~

[Treesie]

My nephrologist has me taking prescription potassium to help keep my levels in the normal range, even though I'm CKD 3. For some reason my body has trouble holding onto potassium and without the supplement my blood pressure starts to creep up.

I eat lots of veggies, bananas, drink coconut water every day and take my supplement. As long as I do this, I tend not to have much swelling and my blood pressure is around 115/75.

Even during my latest flare I've been able to keep my BP reasonably low. Only one more Rituxan infusion to go. Feeling better and my lab results are stabilized and a few readings are starting to head back into more normal ranges.

Went shopping on Tuesday afternoon after leaving the infusion lab. Only side effects are related to my sleep schedule, which always gets messed up by steroids. Either wide awake when I need to be sleeping or nodding off when I need to be alert. Make my husband drive when I'm like this!

Sent from my XT830C using Tapatalk

[Birdie]

I eat lots of veggies, bananas, drink coconut water every day and take my supplement. As long as I do this, I tend not to have much swelling and my blood pressure is around 115/75.

You are what you eat, so what's does coconut water make you? I've never heard of it so guessing it's like coconut milk, or is the same thing. What health value does it have?

[Treesie]

Coconut water is the juice inside of young coconuts. It is higher in potassium than bananas, lower in sugar, and has no fat. So, it isn't the same thing as coconut oil. Coconut oil is derived from the meat of more mature coconuts. You can find it in health food stores and even at Walmart.

Sent from my XT830C using Tapatalk

[Jaha]

Gilders,
So glad to hear you are feeling better, wishing you all the best with more improvement. Take care of yourself and keep us informed on your progress.

Margaret,
It sounds like you got the best of the best treatments and have recovered quite nicely. I'm glad you are doing so well and hope that your tapering of steroids works out well, just take it slow and easy. Welcome to the forum.

[Geoff]

Where's Sangye when you need her!!

Can we please keep on topic? This is Gilders thread good people.

[Bloom]

Hi everyone,

I am hoping to start rituximab, I think funding has been agreed. I have had IV cyclo- 8 infusions this year and methotrexate, neither of which have worked, I still have active disease and new stuff in my lungs.

I have to have a bronchoscopy beforehand and depending on that should start the rituximab. The last CT scan I had about 2 months ago showed evidence of infection as well as the other stuff (described as " tree in bud appearance", sounds nice though!) I am assuming the bronchoscopy is because of that. I had one last November, which didn't really show anything apart from bronchiectasis. I was tested for TB on two occasions last year, which was negative. I have had antibiotics and am on low dose Doxycycline.

Is this routine procedure, I am being treated in London? Also does anyone know if there is anything that would mean I couldn't have the rituximab.?

Best Wishes

Bloom.

[MaxD]

Bloom,

Here's hoping the Rituximab works for you. Just so you know, it is far less toxic than the previous meds you were subjected to, with fewer side effects. It stays in the body for 6 months or more, and does take a while to work, a couple of months, so be patient. Most likely you will know it's done it job when the flow cytometry results show that your peripheral B cells have been depleted.
They always check for TB and Hepatitis before administering Rituximab. And, of course, you cannot take any live vaccines (flu vaccine is OK) until the doc says its OK to do so.

Is the bronchoscopy being done to rule out possible additional complications?

Good luck, and keep us informed of your progress.