Rheumatoid Arthritis and Orencia update

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Today is Orencia day, and I’m about to take my 7th dose.  So I have had a six full weeks of Orencia in my body.  My rheumatologist told me not to even expect any improvement for three months, and that I quite often there is no improvement for six months.  So she warned me that patience is required.

Frankly she does this with every new drug.  She always wants me to ride out every treatment for at least six months.  For Enbrel, that wasn’t a problem because the side effects were manageable.  For Humira, I can’t believe I stuck it out for 5 months of anxiety and depression.

So let’s start with side effects.  I take the shot on a Monday.  After about two hours, a headache starts up.  It’s not bad enough to make me lie down. But it’s enough to make it hard to concentrate or focus.  It’s not pleasant, but it’s not a show stopper.

On Tuesday I feel extra fatigue.  There’s some nausea, lack of appetite.  The headache persists, but gradually fades away somewhere in the night.

Wednesday I have been having better days.  Pain reduced to mild/moderate by 10am, and not becoming worse again until around 4pm.  I still have been able to mostly go to my gym class on Wednesday at 4:30pm. Although last week I only made it through two thirds of the class before I packed up and went home.

Daily pain levels are high. But I do have a reprieve in the middle of the day, most days.  As in the pain reduces, not goes away.  I am still taking 30mg of oxycodone most days.  Some days I still take 40mg.  I usually take 10mg slow release morphine every night. If I don’t take the morphine and oxycodone before bed, I don’t sleep.  At least two nights a week the pain is so bad over night that I don’t sleep anyway, no matter how many pain meds I take.

The increased pain is because I am tapering prednisone again.  I am down to 10mg and holding.  10mg is not enough for me to function.  I will not go lower, because I won’t be able to manage day to day life on less than this.  If I taper further I will be mostly bedridden.  When the pain gets that bad, I also risk depression.  So I will hold at 10mg for as long as I can.  The fatigue is really getting to me right now.  I have no energy. No strength.  No stamina.  Even lifting light weights or doing yoga at the gym makes my muscles ache.  I am not enjoying it, and working hard to make myself keep trying.

I will need to do a prednisone burst soon.  I will hold off as long as I can, but I will get to breaking point. Again. The eternal cycle.

On the whole, I can’t say that Orencia is doing much yet, but it’s not causing me any major problems, so I’m still very hopeful and very positive about it.

The one way that things have improved is that I haven’t had a full body mega flare in 4 weeks. This is a huge deal. This is amazing in fact.  I have never gone that long between mega flares.

A mega flare is when every joint is inflamed and causing sharp pain.  Wrists, fingers, elbows, shoulders, collar bone, ribs, spine (cervical and lumbar) SI joint, hips, knees, ankles and toes, jaw and eyes.  A mega flare knocks me down and I can’t get up.  And I like to think I’m pretty tough.

On a ‘usual’ day, all of these joints may hurt, but it is milder.  And maybe not all of them hurt at once.  My life is permaflare.  I know most people with RA have flares and remissions.  It’s not that way for me.  Its constant pain, no matter what I do.  So I try to do things I enjoy.  And learn to enjoy things I can still do.

It is very unusual to go this long between megaflares.  So I am calling this a win for Orencia. I don’t know how or why, but it’s different, and that gives me a lot of hope.

I’m still in mega flare now, but its improving.  So this post is kind of a mess.  But lately that goes with the territory.

4 COMMENTS

  1. I’m am still hopeful for you, no major side effects as yet is a good thing and no mega flares also, and considering you’re only 6 weeks in I’d say this a positive thing. It’s hard when every day is filled with pain and fatigue and when you have to take toxic meds to get by, to slow things down. We just have to keep going, a day at a time. Fingers crossed for you that things will improve further as you keep taking the Orencia.

  2. I just read your post and replied to your Twitter account. I almost gave up on Orencia at 3 months and it kicked in around 4. I also switched to injection MTX rather than pills and between the two I am just about RA pain-free. I’m down to 5mg Pred and hoping to go off it. I have minor “flare” days of discomfort when the weather is bad but it is nothing like what I lived with for 9 months. I hope Orencia works for you too, if you want to talk more about it I’d be happy to. Email or tweet me 🙂 Good luck! I love your blog!

  3. I have just found your fabulous blog. I can relate to so many of your posts. I was on Orencia for several months earlier this year but had a bad reaction. I’m back on humira again. I’ve also tried embrel. They seem to stop major flares I think but don’t do anything miraculous for me. The only thing that has any real impact is prednisone. I’ve been on above 10mg since last year and am desperate to reduce but can’t manage to get lower than 16 at the moment. If I go lower I feel I won’t be able to walk. I’ve had many cortisone injections into my knee last year. Both knees are damaged, my hips are terribly painful and that sacroilliac joint is horrible! My hands are damaged and my feet are bad too.
    I really feel for you and all you are going through. Good luck with the orencia and with your insurance company.
    Fay.

    • Fay it sounds like we have an awful lot in common! I’m just nodding when I read about you and prednisone, cortisone injections, hips, hands feet…anything to keep moving, keep going. We just do whatever we can. I wish you weren’t going through this, but you definately have a kindred spirit here! I hope humira gives you more improvement than the others. Orencia seems to be lessening the full body mega flares. And if that’s the best it can do, it might be enough. Still plenty of time for improvement! Thanks for commenting and your good wishes. Write back and tell me how humira is treating you.

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