Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

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MaryPop 07/30/2013

Let me start out by admitting I am completely taking advantage of all of you! Unfortunately, you've become a captive group of friends who can understand where I come from in a way no one else can. My apologies ahead of time! :)

Some time around the 22nd of this month, I began to feel my last Actemra infusion wear off. The joint aches and pains began rearing their ugly head. I tried to remain hopeful and positive as I had actually had 2 weeks of feeling so much better and was grateful that I was starting to see benefits of this new med.

Yesterday, I had my 5th Actemra infusion and today I actually had to stay home from work because I feel so bad. Everything hurts, feels swollen and painful and I'm just plain tired of it! I feel like that the good days are only temporary and there are always days like this waiting. As you all know, it takes so much physical and mental energy to do anything! I'm just angry right now and needed a safe place to vent!

Thank you for listening and again....sorry but so very thankful you are all here!

bluedogs2 07/30/2013

MaryPop -

You can vent to me any time you want - just sound off.

I am very sorry that the meds appear to have failed you. I don't have a clue as to what to offer, but know this, and I will speak only for me, I am and will always be your friend. You can speak your mind to me and I will listen ... carefully, looking for a way to help you.

My Pledge.

Bluedogs2

trishcorsi 07/30/2013

MaryPop have you tried methotrexate yet? I have been pretty much free from most pain since beginning it in Feb (time out for surgery & the flare that followed). Have you talked to your rheumy about a possible different approach. Don't ever feel guilty for posting here, we may not have the answers you need, but we will listen with empathy. There is a lot of wisdom to be had in the forum, I see bluedogs22 has visited, he is a very wise person. There are bunches of us searching for answers and listeners; you are among friends. Trish

deleted_user 07/30/2013

MaryPop - I'm so upset on your behalf - the frustration level that goes with this crapola is off the charts at times, we DO get it. You are not alone.

I know my words can't do much, but know you are not alone -vent anytime.

I'm so sorry you are going through this...sending you my best wishes for relief, and soon....

deleted_user 07/30/2013

Marypop, i wish i could help you. but i didnt use that meds yet. so i have no knowledge. hope you feel better after some rest.

if taking some tylenol may help, then pls try taking one.

we are all here to listen to you dear. you can vent.

pls do take care.

twyliah 07/30/2013

MaryPop, so sorry you are not benefitting from your med. I haven't tried any biologics yet, so I don't have any practical advice, however I do believe in the power or an occasional good venting! No need to worry about venting. That's what we're here for. I sincerely hope you find some answers med-wise and feel better soon.

Kimberley97 07/30/2013

Thank you for taking advantage of us that's wat we are all here for to help and encourage each other Lord knows how much I bend everyone's ears!! I hope you feel better soon. Blessings.

MaryPop 07/30/2013

Have I told you all lately how wonderful you are?! :)

bluedogs2 07/30/2013

As you are, as well.

Bluedogs2

altoclef 07/30/2013

I hope it is just that the Actemra hasn't kicked in yet. Have you talked to your doctor about possibly trying another biologic?

I hate the feeling that this disease is lying in wait just around the corner, in the shadows, or a few feet behind.

deleted_user 07/30/2013

Hi MaryPop,

I came upon this site looking for information on others experience with Actemra, and thankfully I found all you lovely people.

I have just had my 10th Actemra infusion after some interesting allergy issues during the last 2 infusions which I was really upset by as the Actemra had been working so well for me. Thankfully we have found a way to oversome the infusion recations.

I noticed that it took about 6 months for me to be feeling better the majority of the time. The first few months I felt as though it wore off about a week before my next infusion was due. I am now finding that I have great relief during the entire month and am back to my normal self. I still tire if I try and do too much which is easy with 2 young kids, fulltime work along with frequent business travel (I hate flying, makes everything hurt).

My CRP and ESR results are now normal and I really have not had any unpleasent side effects (other than the infusion reactions). I am doing really on this drug. I also have a weekly injection of 25mg MTX and sometimes an anti inflamatory if I need to.

I hope you do well on this too, I would stick it out another few months if you think you can.

Prior to this I tried Arava, Plaquenil, Enbrel and Orencia without much improvement.

Goodluck MaryPop

Christine26 07/31/2013

Hi MaryPop, so sorry the medication seems to not be working. I know how disappointing that can be. I have been on many biologics, but not that one. Please keep us posted with the plan? Hope you are feeling better real soon.

littlemac 07/31/2013

So sorry to hear about your flare. I hope you get to feeling better real soon. I know you had so much hope with new med Actemra and it's so disappointing when they don't work as we hoped.
(((Gentle hugs))) for support

deleted_user 07/31/2013

Oh, man. Hoping that it works out for you. I'm not at all familiar with using any of the biologics (yet), but can understand the expenditure of energy to do even the simplest things. Sending good energy vibes your way.

deleted_user 07/31/2013

dont blame you for feeling angry this disease can make a person feel really "MAD"

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