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7/5/16 9:57 P

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Since there is currently a lot of discussion about Rituxan in a couple of the forum threads, I thought I would restart this post so that it can be discussed here (if people like) and because I just had my 2 six-month infusions in June and the knee pain I was having prior to the second infusion has mostly gone now. It's really a very good med for me. I looked through my previous blogs to see if I could figure out how soon I got relief after I started Rituxan but had no luck.

However, I was going through old emails tonight for that reason and found this blurb from one of the emails I sent my sister after my first round of infusions in July 2009 that I thought might be semi-helpful to you:

An article in Arthritis Today (the magazine) said that Rituximab works by killing B cells, the immune system cells that cause inflammation and swelling. Using a new kind of test, researchers from the Leeds Institute of Molecular Medicine in the United Kingdom were able to see that not all of the B cells had been killed off in 90 percent of people who failed to respond to their first round of rituximab therapy. The more B cells a patient started with, the less likely they were to respond to treatment. After repeating the rituximab infusion six months later, however, more of the B cells were killed, and most who didnít respond to the initial treatment saw their symptoms improve.


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Okay, I just found this email that I sent my family on March 2, 2010 (I started Rituxan in August 2009 and by March 2010, I'd had 2 rounds of it):

I went to see my rheumy yesterday and I told him that I didnít think the Rituxan was working because Iíve been having a lot of joint pain for the last two months (ankles, knees, elbows and shoulders predominantly).

But, he said that my sedimentation rate (inflammation factor) was at 40 when I was first diagnosed with RA (rheumatoid arthritis) and now itís at 5 so therefore, something is working and he believes it to be the Rituxan.

So, thatís the good news but it doesnít explain all the pain Iíve been having so I asked him about it and he looked at some of my joints and didnít see any inflammation and then he squeezed them and they hurt a lot! So, he thinks that I may have developed a secondary autoimmune disease, which is common apparently and this one he thinks is fibromyalgia, which is a syndrome characterized by chronic pain in the muscles and soft tissues surrounding joints, fatigue, and tenderness at specific sites in the body.

I can definitely speak to the fatigue. Iíve been tired for weeks and it doesnít seem to matter how much sleep I get. And, I know that my shins are tender because whenever the cat stands on them when getting comfortable enough to lie down on them, it hurts so maybe heís right about the fibro but I must say Iím not thrilled about this new development.

Anyway, heís prescribed me a low dose of Amitriptyline, which is an anti-depressant that is sometimes also used to treat neuropathic pain, which is what I may have.

And, then Iím to go back to see him in a month to see if itís helping.


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So, it turned out that the Amitripyline did take away the majority of the ribcage pain I was having, which turned out to be costochondritis (inflammation of the ribcage, which I am convinced to this day was a side effect developed while taking Humira and I never did develop fibromyalgia as he suspected, which is good. And, after my costochondritis cleared up in April 2010, I felt much better overall and I'd been on the Rituxan for 8 months by then.




Edited by: BKWERM at: 7/5/2016 (22:03)
Joanna from Dundas, Ontario

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BENIGS10's Photo BENIGS10 Posts: 6
2/11/15 12:22 A

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Joanna I had the same thing happen to me when I was on Enbrel. One got so bad I had to go to the ER and have it drained. My doctor had me use a chlorehxidine wash everyday for a week and then use it weekly after that. Most drug stores have it, I got mine at CVS. I haven't had another boil since. She switched me off the Enbrel later on because it wasn't helping.

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BKWERM's Photo BKWERM SparkPoints: (130,077)
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1/30/15 9:45 A

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Thanks, Janis.

The solution my doctor and I have found is that if I take a preventive antibiotic before, during and after, I'm fine so that's what I've been doing for over a year now.

Sorry to hear you get so many infections. Is there nothing you can do or your doctor can do to prevent you getting and suffering from so many?

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JANISMKW's Photo JANISMKW SparkPoints: (114,978)
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1/27/15 9:19 P

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As I'm sure you know, all these drugs shut down or suppress different parts of our immune systems. I pulled out a booklet I have with a chart to see what it says Rituxan affects. It says it is a B-cell depleting agent, so I don't know if B-cells have anything to do with protecting the skin? Have you looked at the fine print that comes with the medicine or the paperwork from the pharmacy about side effects?

Aside from that I wonder if anything you could apply to the area beforehand might help prevent this from happening? I'm thinking retinol creams (anti-aging e.g. Roc brand) or anti-acne products for a period ahead of time to penetrate the skin, or something germ-killing in the short term like alcohol prep swabs or hand sanitizer or raw honey? Am I insane or what? Or you could ask your doctor, I suppose.

Or anything antibacterial to eat or take such as probiotics, cranberry juice, grapefruit, ginger, chicken soup or raw honey?

I'm on Humira which blocks TNFa (Tumor Necrosis Factor alpha, in lay person's terms tumor-killing thing) so it puts me at risk for Basal Cell and Squamous Cell Skin Cancer. A bit disconcerting, since both my sisters had melanoma skin cancer and the youngest died of it.

At any rate, I get many infections: bronchitis, sinusitis, conjunctivitis, and salmonella poisoning twice. I've been sick for months at a time because I have such a hard time shaking them, with the first antibiotics not working, etc. I have to go for a repeat CT scan of my lungs soon because I had some stuff on the CT last summer that we hope will have cleared up.

Good luck.

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KBREV2156's Photo KBREV2156 Posts: 26
1/27/15 8:17 A

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I have been using Rituxan for 18 months now, have had multiple sinus infections, upper respiratory infections. I was in the hospital last week because of a blood clot in my leg moved to my lung don't know if ritual causes clots or not, but my dr said rheumatoid increase the risk for clots

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6/19/13 11:11 A

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I have been on biologics for over two years, and there has been one or two instances where I got some sort of bad rash almost immediately after my injections. My doctor has told me that it could have been due to a weakened immune system. But between the methotrexate and injections, they are supposed to weaken the immune system to control the RA. I take vitamins and supplements, and I have started using those Ester C drink mix ins which have zinc, vitamin C, B vitamins and supposed with immune system. Unfortunately, I think this is a trade off. Good luck!

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4CYNDI's Photo 4CYNDI Posts: 13,499
6/12/13 6:09 P

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Never had that particular problem myself. However, I once got really, really sick from taking mtx within a day or two of my Remicade treatment. Both of which lowers the immune system. My doc told me not to take it the weekend after a treatment if it was on Thurs or Fri.

The other thing I do is take a lot of supplements like vitamin c, b-complex and a multivitamin. Which reminds me I need to get some more C.

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BKWERM's Photo BKWERM SparkPoints: (130,077)
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6/12/13 2:35 P

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So, the last two times I've gotten my biologic, Rituxan, I've gotten a boil as well and I've got to say that they were most unpleasant especially when they burst.

I suspect that the reason I got them is because with RAD, I have a weakened immune system and the Rituxan also lowers the immune system.

Has anyone else ever had anything similar? Does anyone know of a way to strengthen my immune system so that I don't keep getting them? I don't want to stop taking the Rituxan since it's actually helping but I really don't want to keep getting boils either.

And, the following info might be TMI but let's just say that getting them has been literally a pain in the butt!

Any help would be appreciated.

Edited by: BKWERM at: 7/5/2016 (21:29)
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