View Full Version : Please help Teriod!
01-24-2008, 09:08 PM
We need some help. This is teriod's wife. We had a dr appt today and they want him really to start thinking about him get treated with rituxan they really think it might work for him. They have used up everything else and he needs to make a disussion. I will support him no matter what. My question is: Is there anyone that has had this treatment or had a loved one treated? If so could you share your story with us? I have been looking it up on the web and everything I have found out so far is so scary.
Thank You All
01-24-2008, 10:06 PM
Hi Teroid's Wife,
I just want to say my prayers are with you both.
I have no information of personal nature, but I did do a google search. Most information seems outdated.
Had you read the FDA report on using this drug for Lupus? Note if so, it is just an advisory. Last report was dated December 2006.
I believe I have read the drug name here in this forum, so I am sure someone will find there way here. Maybe repost, or add the word...with Rituxan in the subject or at the top of this window there is a search, type in Rituxin. It came back with many posts from our family here.
I wish I could say more, do something. Know though none of us have met one another, maybe a few have...I know we all care about each other in a special way and I do care about Teroid and you. In my prayers, in my heart.
Hugs full of love,
01-25-2008, 11:01 AM
Teriod and Teriod's wife,
I took Rituxin for 2 years (at intervals). I had nausea and a couple of times my blood pressure went up during infusion. The nausea was so severe (with vomiting) I had to go into the hospital with electrolyte imbalance the last time. However, the doc told me this was not a common side effect. I tend to get nauseated with virtually all drugs, so it was not a surprise with me. If you get nauseated easily, ask the physician for nausea med BEFORE infusion begins. Also, eat well but not heavy food (fried, spicy, etc.).
Otherwise, I did not have much in the way of ill effects. I was a little "washed out" for a few days after the infusions, but I did find that many of my symptoms abated for months after about the 2nd or 3rd infusion. I eventually flared full blown again (after a year), but the docs are scheduling me to go back on the Rituxin again (yeah!!).
It is my best hope - I have run the gamit of treatments, too. So, I would say, "Go for it." I was scared at first, too, because the literature can be quite scary. It has been used quite a bit by my physician, and he is quite comfortable recommending it. In fact, he lectures around the world about his experiences with Rituxin (as well as other innovative treatments for inflammatory diseases).
Good luck. We will have you both in our prayers.
01-25-2008, 11:03 AM
Thank you very much for all your kind words and prays. My husband has used this form as his support group since we found out he had Lupus. I don't like to use this form much I want him to be able to be honest on what he writes and not worry about being a mocho Guy tring not to upset me. He talks about the people on this fourm all the time. We have read the advisory on Rituxin for lupus. The good thing w have going for us is that he has a very heathy heart. His doctors are very confident this will help him but of corse the have to let you know the dangers of it too. I understand all that. We know someone that use Rituxin that has an auto immune disease but not lupus and she loves it she said it was the best and she is still better now than before. I just wish we knew someone with SlE Lupus. I guess I am really just looking for a guarantee that my husband will be fine and everything is going to work perfect. I know that nobody can do that I just wish I could see the future to make sure we make the right choice. Anyway thank you again it's nice to know my husband has a great group of people that listen and help him.
:D :D :D
01-25-2008, 11:19 AM
Hi Teroid's Wife;
First, please give Teroid our love and let him know that we are all thinking about him, keeping him in our prayers and in our hearts and that we've missed him.
Rituxan (Rituximab) was not initially intended to treat Lupus, therefore it is referred to as an "off-lablel" treatment when used for Lupus or RA. Please be aware that the FDA issued a warning about using this drug for Lupus (I believe this was in 2006) after two people died from multifocal leukoencephalopathy (a rare and usually fatal viral disease that is characterized by progressive damage or inflammation of the white matter of the brain, at multiple locations (multifocal). It occurs almost exclusively in people with severe immune deficiency, e.g. transplant patients on immunosuppressive medications, Immune compromised patients on immunosuppressive medications or AIDS patients). However, this was two people out of the thousands and thousands of Lupus patients who use Rituxan.
Doctors began prescribing Rituxan for Lupus because they felt that it was not as hard on the body as conventional treatments of immunosuppressive drugs, including combinations of steroids in high doses with medications such as azathioprine, methotrexate, mycophenolate mofetil, or cyclophosphamide (some of these treatments are also "Off-Label" treatments). rituximab is generally used, off label, in patients with severe manifestations of SLE and who are unresponsive to the other medications mentioned above. In many of these cases, when the patient and the doctor have run out of options, rituximab has been found to be quite effective and safe when used for a short period of time (less than a year).
Rituximab targets CD20-positive B lymphocytes, cells that can become cancerous or exhibit autoimmune effects resulting in the development of diseases like RA and SLE. Reports of serious viral illness have included many confirmed cases of PML (a progressive neurologic disease resulting in irreversible neurologic deterioration and death) in patients with non-Hodgkin’s lymphoma (NHL), either during treatment or as long as one year after the last dose. PML has also been reported in patients who were treated with other immunosuppressive drugs, and prior to the development and use of rituximab. NO CASES OF PML HAVE BEEN REPORTEDIN RITUXIMAB_TREATED PATIENTS WITH RA, BUT THERE HAVE BEEN TWO REPORTED CASES OF THE VIRUS IN LUPUS PATIENTS USING RITUXIMAB. While there are sophisticated tests that can tell you whether or not you have been infected with the virus, no test can predict whether or not you may get PML. Certainly, any patient treated with rituximab or any other immunosuppressant medication such as steroids or cyclophosphamide, should report any new neurologic symptoms their physician immediately!
Here is an article I found:
"The two lupus cases reported by the FDA, in patients previously immunosuppressed, do not seem to provide a high enough level of concern to eliminate the off-label use of Rituxan in systemic lupus erythematosus, in view of the limited options and the risks associated with those options. In rheumatoid arthritis patients (who are generally less desperately ill than the most severely affected lupus patients) no cases of PML have been reported in patients taking Rituxan. Physicians should maintain a very high level of suspicion for any Rituxan-treated patient with new neurologic symptoms, such as disorientation, difficulty with balance, walking or speaking, or new visual difficulty. At this time, we feel that Rituxan continues to be a reasonable option in patients with active rheumatoid arthritis and lupus where their level of disease justifies the use of this medication, after consideration of the risks and benefits of available alternatives. Patients with SLE who have been, or are being, treated with rituximab have a few options, each of which should be discussed carefully with their physician:
1. In those who have previously been treated with rituximab successfully, some may not need retreatment, and all factors, including this report of PML, will need to be considered in the decision to use rituximab again. A patient who has taken rituximab should contact their physician immediately if they develop new neurologic symptoms.
2. In those patients who are currently being treated successfully with rituximab for an active SLE problem, and if all other therapies have previously failed, the decision regarding continued use of the drug and/or retreatment will need to be made employing the new information about the rare potential development of PML. Other therapies can be considered. As new information arises regarding JC virus, its measurement, and the ability to predict who might develop PML after rituximab use becomes available, it will need to be considered in the decision process. A patient with new neurologic symptoms during their treatment with rituximab should contact their physician immediately.
3. In those who are currently considering the off-label use of rituximab, it is vital to incorporate this new PML data into the decision-making process. If other drugs have failed to help, and rituximab offers a high likelihood of improvement, it should be discussed carefully with a physician.
4. In those who are thinking of joining a study that is focused on determining whether rituximab is effective in the treatment of renal or non-renal lupus, remember that the FDA has not stopped those studies in the face of the two patients described above. That is because rituximab has good potential to be important new drug in the fight against SLE, and the FDA believes that such a study continues to be reasonable and important. The FDA may change the protocols in the setting of this PML information to assure greater safety, oversight, and long-term surveillance."
Hopefully this information, along with responses from members who have used Rituxan, will help Teroid, his doctor and you to make an informed decision. I wish you both the very best, and again, send Teroid our love.
Peace and Blessings
I had Rituxan! in 2005 I was very very ill and was hospitalized (UCDavis-great place)I had multiple serious problems. Pleuresy, pericarditis, pulmonary embolism, severe hemolytic anemia(my red blood cell ct was only 1/4 of what it should be) and a few other problems besides. Only 3 days after I was hospitalized the started the Rituxan. They were saying it was medically necessary due to my condition. I was scared to death. Everything went very well. before the first infusion, they gave me all kinds of pre-meds to counter act any allergic reactions I may have.-they start the infusion very, very slowly the first time and watch you very carefully.(I also asked for meds so I wouldnt get nausea)For me, these combonations of meds made me silly, but it was somewhat a relief as it relaxed my fears. As I said, everything went well, and also for my following 3 infusions. I did get some uncontrolable muscle twitching during the last treatment, but all turned out fine.
Since then, I have not had any redblood cell issues or real severe lupus problems. I did have pericarditis in the following year, but no other lupus symptoms. I have been on prednisone, methotrexate, colchicine, protonix, folic acid...... and for 18 months, on Warfrin-blood thinner. I was 40 at the time of this hospitalization, when I was intially diagnosed.
So I must say, I have had a faily good outcome from this treatment. I would probably do it again if I had to.
I am only 45 minutes east of your area and see a good rhuem. in Davis. Who is your doc?
Best of luck with what ever you decide.
02-03-2008, 09:29 PM
How's Teroid and you doing? Have you decided on Rituxin?
Life is hard, especially since it doesn't come with a written guarantee and also no instructions. We flounder about from birth until we are called home.
Thinking of you two...asking that you both be blessed.
02-03-2008, 10:46 PM
You are both in our thoughts and prayers. I wish life came with an instruction manual firmly detailed. I am a firm believer in prayer and your questions will be answered.
Please keep us updated on Teriod.
Take care & God Bless,
James 2: My brethen, count it all joy when you fall into various trials, knowing the testing of your faith produces patience.
02-05-2008, 04:47 AM
Teriod's wife: I was at the Mayo Clinic last year and they were considering starting me on Rituxan. We went another route, but it's still on the table as an option. Mayo is using it for SLE patients, as is the University of Minnesota (just read about that.) I think the body of knowledge about Rituxan as an SLE treatment is growing, so they will have a much better idea how it's likely to affect Teriod. Tell him he is missed and we hope he has great success with the Rituxan treatments.
02-06-2008, 09:08 PM
Just saw this post and wanted you to know tha tI"m thinking of you (both)!