What's in a day?

General Blog
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Most days recently have been good and the scale has definitely been tipped towards wellness. Today. however, illness is besting wellness.

My doctor has asked me to try spacing my Humira shots to once every three weeks. We're trying this because I kept having pretty bad reactions when I would take my shot every fortnight. The worst side effects were acute and chronic restlessness that made me jittery and unable to sit or lie still. This, inevitably, led to two or more sleepless nights every two weeks in the days following my injection. The working hypothesis is that I need a little longer between shots to get all of the Humira out of my system.

This morning was day 19 since my last injection and I felt absolutely crappy. I had a bad night's sleep despite being so tired last night I could hardly talk thanks to a wonderfully exhilarating and exhausting yoga class followed by a somewhat less exhilarating but equally exhausting board meeting. I woke around 3:00am and felt achy and stiff but not in the yoga-induced places. It was incredibly stormy outside and on finally getting up I noticed that a screen on the deck was falling over so I went to retie the tethers only to find my fingers were entirely uncooperative. With all these symptoms I decided to give myself the Humira shot a couple of days ahead of my new three week schedule.

This is the first time I've noticed an appreciable worsening of my symptoms before taking my Humira injection. It's too soon to know if I'll be having any weird restlessness and I will probably take an Ambien tonight so I will sleep through any tougher side effects. I think my doctor might be on to something with the interval between medications. I used to long for my Enbrel a day or two before I was due for it but that hasn't ever happened with Humira. So maybe he's right. Maybe 18 days is the magic number. 19 days between shots felt like it was a day too long.

And now, for your viewing pleasure, a headstand performed rather well by a kitten!

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Wow, fab kittie pic! You take care and I hope you sleep better tonight.

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Thanks, Jules, Sybil. I wish that were my kittie but, alas, Tillie's no fan of down dog, up dog, or the rest of the yoga poses except for shivasana--corpse pose-- which she is currently executing perfectly on my legs.

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I've had to tweak my biologics many times over the years. After you experiment for awhile, you will get it down to the day that works as the best tradeoff for disease symptoms / side effects. Keep trying!

The easiest bio for me was Simponi....it's supposed to be every 4 weeks. Like clockwork, almost down to the hour, it would stop working at 3 weeks. It was bizarre how easy it was to pinpoint! I took it every 3 weeks for almost a year.

My dr. explained that when they do the trials on the meds, and set up dosing, they pick something that works for an average. He said that not everyone will respond well to that dosing schedule, and that dr's and patients should modify it to work for them (barring toxicity, of course).

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iWow, upsidedown kitty !!! Too cute.

Janeatiu,I have been dealing with this disease for 32 years and trust me when I say I have been on almost every type of drug known to man. I have discovered, along with my Physician that no matter if it was Enbrel, Gold, Humira, or Remicade, they all run the course and then it's up to the Rheumy and you to see what could be tried next. I have had every combination of oral meds from NSAIDS, to minor analgesics to powerful ones. I was on NSAID that caused me to have recurring gastric ulcers, so those had to be stopped years ago. I also had issues with oral prednisone, but with that my heart went in to warp speed so no way would I take that again. I was recently placed on Leflunomide (in concert with Remicade Infusions) and it was working beautifully until the main side effect of nausea was too much to tolerate. I was afraid of developing another ulcer.

I just saw my Rheumatologist Monday and he is going to start me on Simponi Infusions. Remicade has not been working for a few months now so it is on to yet another wonder drug. I am the first Psoriatic Arthritis patient, (and his most challenging in his 30 years of practice) he has prescribed this for and will begin April 15. Simponi is recommended with Methotrexate as well, but again, I was on that as an oral med and developed another ulcer. We have not tried Methotrexate injections yet and we are just going with the Infusions for now.

I went around the block to get to the corner here, so sorry, but what I am saying is with this disease, it is trial and error, ALL THE TIME ! This disease is chronic so we just have to learn how to deal with it. My first Rheumatologist told me when I was diagnosed I would be on full disability within 2 years. I proved him wrong and worked for the next 30 years so a lot of it is how you and your family deal with a chronic illness. I will not lie and say I do not have daily pain, I do, and I have taken Vicodin daily for years and it works for me and my Rheumy agrees and has no problem renewing my prescriptions. If I do not take it, I would be sitting at home and doing nothing. Over the years, there were days at work I would hide in my office and cry because of the pain, but again, better than sitting at home. I had to finally pack it in 5 years ago and go on permanent disability… but for 30 years I won over this disease.

The Remicadehasn’t been the best for me these last 3 years, and the joint deformities in my hands and fingers have progressed more in the past 5 years than they did in the entire 25 years prior. Go figure with this disease huh? I had to go on early disability and after two years was approved for permanent disability well before retirement age so no longer having the luxury of private insurance through my job I had to resort to Medicare and a Private Supplement. And FYI, Medicare and/or private supplemental insurance will not cover home injections unless it is for insulin. Therefore, Humira and/or Enbrel are not covered. I was actually doing pretty well on Humira, but thanks to our government, I have to have infusions. I could go on and on about this, but I don’t want to bore you further!

I never had any reaction from Humira or Enbrel . Sad to hear you are suffering all this, but again, everyone is different and it is a long arduous process, so hang in there and rejoice when you have those wonderful days !

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Thanks Erinsmum, Marietta,
I'm really open to trying all kinds of tricks to get the medicine and the illness in sync. Up until this point I had always imagined the answer to be _more_ as in more medicine or more often. This go around has taught me that less really can be more.