Rheumatoid Arthritis Support Group

It's hard to say whether I had any actual side effects with MTX, but what I would say is that, whenever I looked at the bottle, my heart would sink and I'd think to myself: "I've got to take that today in order to get better. Who knows how much worse it's making me in other ways?' I felt uncomfortable having to go for such frequent blood tests. I felt the tests were not so much to do with how the RA was improving, but more to make sure my liver and kidneys were not being damaged. I chose to come off them and go on to homeopathy - a decision which the rheumatologist did not oppose. She said, after a few months, that I seemed OK 'at the moment'. I'm due to go back in two weeks for a further appt. I'm afraid I don't know anything about Rituxan and Orencia so am in no position to comment. I'm so sorry that you're having so many problems. The whole thing is very 'trial and error' and, because no two people are the same, there cannot be a 'one size fits all' approach to the treatment of RA. Each person has to find their own way, which may not be 'THE' way forever, because circumstances and symptoms change. I'm someone in whom the disease was very severe almost immediately but now it is very slight. My pain is because of damage caused in the first few years rather than the active disease. I wish you the very best of luck. Kathy

I just started Rituxan today. Let's share notes.

I may have had a near death experience with methotrexate causing lung problems.

I did have a near death experience with Remicade, with drug-induced bone marrow suppression.

I'm hopeful of Rituxan.

On methotrexate my hair fell out
on enbrell I got some white matter show up on my brain
on cimzia I developed a rash and ended up with nhl
dr wants to start rituxan on the 23 not going to do it. I have tried enough.

I blew up on Enbrel...literally. My arms swelled up with soft masses ans fluid filled cysts. That was almost 4 years ago and I still have them although they are smaller....I was on Enbrel for 3 months.

Humira I had an immediate allergic reaction..within 30 seconds of getting the shot so that's out.

But I've been on Orencia for 27 months and have had no adverse effects. MTX is a bigger problem than Orencia....had to stop it due to mouth and face sores. I've lost weight on Orencia and was able to crochet a sweater for my granddaughter this past Christmas...a jumper too. it has truly been amazing to find the right drug.

I'd try Orencia. Yeah, it inhibits all the cytokines but it doesn't totally trash your T-cells. You do have some immune system. I've gotten bad colds from my granddaughter and have had no trouble fighting them off(daycare colds are the worst!).

Jenny

I have failed 2 antiTNFs at regular and double doses (Humira and Enbrel) Rheumy said my only options now are Orencia, Rituxan or Actemra.

Being that I've seen some nasty infusion reactions to Rituxan (I worked in hem/onc for 15 years), AND that it can cause fatal PML, I nixed Rituxan - actually DH was with me for the visit and HE nixed it!!!! :D

Actemra can drop your WBC count dramatically to make you hugely prone to infection - considering I work in an urgent care setting and see sick patients all day - I said NO to that one too.....

Left me with just Orencia - I've had 2 infusions - no reaction to either other than massive fatigue for a day or two....3rd one is this Saturday....then I go monthly thereafter!!! Looking forward to THAT!!! The infusion is 1/2 hour long, 15 minute flush...I'm in /out in 45 minutes start to finish!! It's great!!

So that's what I'm taking - rheumy did say it can take UP TO 4 months to work, but rare to have side effects or reactions....that's why we went with that one....Let's hope it works!!! :D

I have been diagnosed for 12 years. Methotrexate almost since the start, then added relafen which raised my BP. and ARAVA. Took away the relafen, started Embrel which was good for about 2 years. Then in July started Rituxan. Just finished my second series of infusions and no side effects. Still taking methotrexate and arava. I know there are risks to all the meds but for me its about function!! Why live in pain and unable to do anything for 20 years if I can have 10 years of function and living life. I figure I will deal with the side effects or risks when they occur. I work full time and have 2 grandkids living with me aged 5 and 6 and most times I am moving fairly well...Knock on wood no side effects or stomach issues

I had side effects taking Remicade. I got optic neuritis...now am wearing glasses! Because I could no longer take TNF blockers I am now on Rituxan and doing much better. Not as many side effects and just feeling better in general. I also take 2 10 mg of folic acid.every day to help prevent hair loss. I give myself a 0.6cc shot of Methotrxate weekly. But it is all better than how I felt before. Good luck...sometimes I think it's likea witch's brew.....u just never know the spell it will cast..hehehe

It's always interesting to see old posts resurrected, especially one that I've commented on. Yep, that's me (buddhacat) with the duck avatar.

Maryjane88, it sounds like you've made up your mind to not take Rituxan, and I certainly respect your choice. However, I do want to mention that there are a lot more current posts that you may want to take a look at. I know that when I first joined this group, there was little in the way of first-hand experiences, and I would love to have had some feedback. For the record, I started my 6th Rituxan treatment last Thursday (nearly 3 years), and I haven't had any side effects, save an increased susceptibility to infection, but that was true of methotrexate and Remicade, as well.

I wish you well, however you choose to deal with RA.

No TNF blockers worked for me but I had success with Orencia for about a year and a half or so. I felt great on tthe Orencia and the energy levels verus fatigue was very noticable. Orencia began to fail me and I was told rituxan was my next choice. Like you I was worried and scared about all the side effects. Much to my surprise I have had no side effects from the rituxan with the exception of being a little manic the 24 hours after the treatment. That hyperness is due to the prednisone they pre medicate you with first and I have always reacted that way to prednisone. I still take MTX in an injectable form and it gives me mild headaches on shot day and has caused blueness in my teeth, but I believe it really helps me so am sticking with it. I have found no difference in the first line bio;ogics and the heavy guns regarding side effects or illness. I took a long time to make the decisions regarding orencia and rituxan and now I wouldn't hesitate at all. But that is me. The rituxan has given me back my life. I work out regularly, do activities that I couldn't do before and have much more energy and an overall sense of happiness regarding my physical condition. This is just my story, not sure if it helps you make any decisions or not.

Old Post. I knew it when I saw BuddhaCat (no 3) and that he was just starting it.

It has been great for me, by the way. Finally working full steam ahead, with NO side effects.