Rituximab

[Alysia]

How much is your creatinine compared to before rtx ?

[annekat]

Good to hear from you, Gilders. Sorry to hear your kidney numbers are worse again, but so glad you are somehow feeling better anyway. No doubt the latest RTX will improve things again. It's great you got on that trial, as it shows how much it helps you. It seems that RTX may need to be an ongoing thing for you. Best to you, and continue to keep us updated!

[gilders]

How much is your creatinine compared to before rtx ?

Hi Alysia, hope you're well.
I'm not sure which measurements they use in Isreal for Creatinine, I know it's different in the US to UK. Here are my results, I've converted some (Hopefully correctly)-
Before my most recent relapse my creatine was hovering around 220 umol/L
During relapse it had been jumping around, but seemed to settle at about 250 umol/L (2.83 mg/dL)
I then had 4 RTX infusions at the end of June.
My creatinine rose and settled at about 270 umol/L.
It then rose to 300 umol/L around end July and spiked to 360 umol/L (4.07 mg/dL) just before I was due a kidney biopsy.
It then suddenly dropped to about 200 mid August. We had hoped it was Rtx doing it's magic, but seems like it was just an odd result.
It then settled around 265.
But my last test showed it had jumped back to just above 300.

So, it's a bit hard to answer your question until it's settled down. But it's roughly gone from 250 before Rtx to 300 at the last test.

[Alysia]

Thanks for sharing Pete. The numbers here are much the same but with a dot so the normal is 1.00 and below. I guess its 100 for you.
So your numbers are still high above the normal. I wonder why it jumps to 300.... ??
Sending my prayers and love ♡ please update us.

[Margaret_B]

Hello! I am a new member to this Forum. I appreciated this Thread very much. This is the first time I have had access to other people who have GPA. I am so happy I will be able to read your posts and share mine!

I was diagnosed with the disease in June of this year, following (4) months of mysterious symptoms such as swollen ankles, headaches, inflamed eyes (i.e. scleritis), and eventually, extreme fatigue, cough, coughing up blood, and severe off-and-on pain in my feet requiring me to use a wheelchair. I saw a general practitioner, a pulmonary doctor and a rheumatologist. None of them could diagnose me. However, the eye doctor I saw for the inflammation and pain in my eyes knew that I was dealing with an auto-immune illness. All the tests I was given by the other doctors kept turning up NOTHING. Why? Because they were looking for allergies, bacterial infections, TB, Rheumatoid Arthritis, Lupus or Lymes Disease! The eye doctor kept encouraging me to see a different rheumatologist she knew who was very skilled with making diagnoses in other patients she had who had undiagnosed auto-immune diseases.

On my 2nd visit with the new doctor, he diagnosed me with Wegener's (now re-named "Granulomatotis with Polyangiitis since Wegener was a Nazi). He had seen the disease before and put 2 and 2 together when he saw the CT Scan of my lungs (ground glass opacity) sent me for a test that identified the blood clot in my leg, and saw protein and blood in my urine test. The "lung" and kidney" connection made it very clear that it was the blood filtration systems in my body that were being attacked; a clear sign of GPA and Vasculitis. He sent me to the Johns Hopkins University Hospital in Baltimore, Maryland, that very day (the hospital is about an hour from where I live in Bethesda, Maryland. (NOTE: Clinical trials for use of Rituxamab were done at Johns Hopkins in 2011, and the nephrologist who treated me at Hopkins was involved with those clinical studies at the Hospital's Vasculitis Clinic. My new doctor knew that was the best place for me to be sent since the staff there was familiar with this otherwise rarely diagnosed disease.)

MEDICATIONS & TREATMENT. At Hopkins, I received outstanding treatment. Over the 18 days I spent there, I was given a kidney biopsy to confirm that I had GPA; (4) packed red blood cells transfusions over the course of (3) days because I was severely anemic from bleeding in my lungs and kidneys; a total of (7) Plasma-Pheresis exchanges during which my blood plasma was removed from my veins, separated from the other parts of my blood, and replaced with donated plasma (This "exchange" process removes the antibodies in my blood plasma that are attacking my own organs and replaces it with donors' plasma that does not have the antibodies in it. Google "Plasmapherisis" to learn more about this fascinating treatment that helped save my life!). Concurrently, on the first (3) days I was hospitalized, I received (1000 ml) of steroids per day to control the inflammation in my lungs and kidneys so they would stop bleeding out. After the (3) days of IV steroids, I was put on 60 mg a day by tablet. Then, I was given (3) infusions of 400 ml each Rituxamab, one week apart, using the same protocol described by our fellow member, gilders. I had NO bad reactions or after-effects, other than extreme fatigue, probably from the anti-histamine. My daily blood, urine and X-ray tests started to show immediate improvement!

OTHER TREATMENT. During my hospitalization, I was on oxygen because of my lung damage, intubated for (4) days because one of my lungs was punctured by mistake, had an IV Filter surgically placed in one of my main arteries in my leg to catch clots before they went to my lungs (I had a clot in my leg on the day I was admitted, and, because my lungs and kidneys were bleeding, I could not be put on blood thinners). I needed infusions of Potassium and fluids for dehydration every other day or so. When I was intubated, I had panic attacks because of the tube in my throat. The nursing staff was very prompt to give me an injection of Adivan (only .5 mg) every time I asked for one. That immediately helped me relax. After 4 days, I insisted the tube be taken out, against medical orders. That is another whole story but here I am, alive to talk about it!!!

REHAB. I participated in physical therapy and occupational therapy while in the hospital. I was the ONLY patient in ICU who insisted on getting out of bed and walking around the floor, even though I was very weak. I was determined to do all I could to get better and avoid going to a rehab center after my discharge. I had to have someone walk with me and push my oxygen tank around. I worked my way up to 10 laps on the floor and continued when taken out of ICU and put in a regular bed. I practiced blowing into an "incentive meter" to improve my lung capacity. I took lots of naps and ate very healthy meals, drank lots of water and restricted my visitors to only my husband and two adult children.

SINCE DISCHARGE. I have been home for 3 months. Between diagnosis and discharge, I lost 22 pounds and since coming home, put 14 pounds back on. I feel great and am very happy to be alive and living each day in the moment. I swim laps in my Condo's pool and recently worked up to walking two miles without stopping for a rest. I have had one additional infusion of Rituxamab, again, with no side effects. I developed steroid-induced high blood pressure and am on medication for that now. I have not developed diabetes, which I understand many people with GPA develop after being on steroids for a long time. I have no pain, sleep for 10 hours every night without interruption, and receive blood and urine tests every two weeks. My doctors call me after reviewing the results. They adjust my diet, medications, etc. accordingly. While I was still in the hospital, I called my employer and told her I was not coming back. I retired. Luckily, I turned 65 in July and had that option.

SINGLE CONCERN. I am in the process of tapering off the steroid. I am experiencing weird side-effects. I will start a new thread about this topic soon if I do not find a thread already started about tapering off steroids. I am really, really interested in hearing about other people's experiences because I am, quite frankly, afraid that tapering off of them will cause a huge flair and I will have a big set-back.

For now, goodnight! Good health to you all! margaret

[woz]

Glad you are feeling better Gilders, hope the Rituximab kicks in, and you feel even better, all the best.

Regards Woz....

[gilders]

Hello Margaret B and welcome!
It sounds like after some severe Wegener's activity you've responded well to treatment. I also think your positive attitude of getting out of bed and getting your body moving has also helped in your recovery.

As for your concern about steroids and tapering - everyone has their own opinion, but for me I always aim to reduced and eventually stop taking them. I was diagnosewd with WG just over 20 years ago so have now ended up with complications of long term steroid use. Therefore it has changed my view of being scared of reducing steroids in case of a relapse to being more concerned about the damage that they do. I have managed to have periods of remission whilst being "steroid free". I have had 4 relapses, each time has been whilst not having steroids. I am hopeful that when I eventually reduced my current steroids to zero, Rituximab infusions will keep wegener's in remmision without the need for steroids or other immune-suppressants such as Azathioprine.

I'm surprised you had potassium infusion with kidney involvement, I've been told to make sure I keep my potassium intake low due to renal failure (stage4-5).

By the way, we have a "New member introduction" thread. You might want to start a new thread there and copy your post to that area so everyone else can welcome you in case they miss it on this "Rituximab" thread.

All the best and keep us updated.

[Birdie]

SINGLE CONCERN. I am in the process of tapering off the steroid. I am experiencing weird side-effects. I will start a new thread about this topic soon if I do not find a thread already started about tapering off steroids. I am really, really interested in hearing about other people's experiences because I am, quite frankly, afraid that tapering off of them will cause a huge flair and I will have a big set-back.

First I'd like to say welcome and second... holy cow I wish I'd had that level of care. Just start a new thread, that's what the button is for.

When tapering prednisone you need to be constantly aware of your condition, every little pain, any changes anywhere, write down the changes to compare later. Don't be in a hurry, slow taper works. From 80 mg a day they had me drop in 20 mg increments. It did not work and several times I had to return to 80 mg until stable, then try & fail with the same reduction strategy. It took about a year to get off 80 mg per day.

I've been at 5 mg for a couple of years with no joint pain or inflamation, and nothing I'm certain is a Wegeners symptom. I have massive fatigue, far beyond anything I've heard anyone else describe. I attribute it to prednisone along with earthquakes and tornados since pred can cause so many issues. I finally got doctors approval to start prednisone reduction. I'll be reducing 1 mg at a time every few weeks. With luck I can get to one or none in four months, without any negative effect.

[Pete]

Hi Margaret,

Welcome to the "club". It seems you are getting first-rate care at JH.

I'll echo Gary's thoughts on pred tapers - slower is better. When I got off pred altogether, I tapered down from 10 mg at the rate of 1 mg/month. I did get to zero, but it only lasted a few months until symptoms started appearing again. Earlier this year, I got down to 3 mg/day again, and symptoms reappeared. I'm holding at 5 mg/day and doing well. I guess I'm ok with remaining on a low dose for the foreseeable future if I continue to be well as measured by my general sense of well-being and monthly labs.

[Debbie C]

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. Do keep us posted.


Margaret,welcome, unfortunately to the club ! Sounds like you are doing very well for just being dxed. But they did do a full treatment on you while in the hosp. Hope you continue to improve.