Tag: joint pain

Humira, I think you and I are going to get along fine.

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So, since we are clear that this is now an RA blog, I won’t feel guilty at all about blathering on about my RA.  I finally got the go ahead to start Humira last month, and had my first shot two weeks ago.  I guess I shouldn’t have been so excited about starting Humira, since that meant I had reached a point where I was considered to have moderate to severe disease, but lots can change in one year.

One year ago, I had just been diagnosed with RA.  I was still reeling from the punch in the gut that news was and trying to wrap my brain around the toxins I was now going to have to ingest to stave off crippling deformities.  Initially, I remember telling my sister that I would not take them.  I had no intention of using Methotrexate or a biologic as I was still thinking I could eat clean and kick this thing, but like I said, lots of water goes under a bridge in a year.  I quickly discovered through research that aggressive treatment is what is recommended and that you have to go through a process where insurance sort of gets to choose the order and introduction of treatments.  I also learned that pain is a great motivator.  The exhaustion was initially the worst aspect of this disease.  I cannot quantify or adequately describe what it was like, but it is the kind of exhaustion where laying down to cry [or die] sounds like a great plan.  The methotrexate doses had to go up and up until I maxed at 23 mg each week, injecting what looks like antifreeze into my thigh or belly.  The side effect of this drug is also exhaustion, so by late last spring I was no longer even an approximation of my former self energy-wise.  Adding in Plaquenil this fall gave me back my energy, thank heavens, but did not really help with the ever increasing pain and swelling.  Each day I would awake to a new hellish joint pain or swelling– balls of feet, tendons in my arches, tendons in my heel, knees, wrists, thumb joints, knuckles, neck, jaw, you name it, I feel like I have dealt with it.  The tendon issues in my wrists eventually incapacitated me by making it impossible to make a fist and grab or grasp things.  These mornings, I could barely get dressed, I could not hold a cup with one hand, and my students had to take the caps off my sharpie markers.  I got used to walking like an old woman every morning and asking people to help me open and close things.  I dropped out of Zumba, stopped walking, running, hiking, and gained 15 pounds.  My hair fell out in gobs until sometimes after a shower I would cry looking at my scalp showing through what used to be wonderfully thick hair.  I had to become creative with haircuts, color, and styling products.  “Luckily,” said my sylist, “you started out with lots and lots of hair.”  Yeah.  Now, I don’t really get obsessed with the hair any longer or the weight.  I just want to be able to dress myself and walk and exercise again.

Humira arrived from a special pharmacy, in a special cooler, with a special co-pay plan [so I don’t have to pay the $25k a year that it actually costs], and a special coach who calls to remind me to inject and listens to my concerns.  The first injection was unremarkable.  I was pretty frightened of what side effects that I might have, but I really haven’t had any to speak of other than decreasing pain and swelling- hell yeah!  The day after I had a headache, 3 days after I heard a wooshing sound in my ears that was like being underwater, but it did not last more than 20 minutes.  I was on 10 mg of prednisone a day to get me through until the Humira kicked in, and within a few days I was down to 5mg, and this week down to 2.5 mg.  I will go to 1.25 mg. next week and then let it go the week after if all goes as it has been.  Tomorrow is injection #2 and I had breakthrough pain this morning, waking to swollen and sore wrists and thumbs.  I guess that means it is working and for that I am truly grateful.

I have read that this TNF inhibitor can raise HbA1c levels and so I am trying to watch my sugar intake and increase my exercise as I can.  It is true though, what they say about invisible diseases.  No one really knows what I go through other than Bean.   It’s like fighting this giant dragon every day but no one really knows that you are doing your job and fighting the dragon at the same time.  I’m not sure what difference it would make if they did.  I don’t guess I deserve a medal for it or anything, it would just be nice not to have to fight him.  Right before the Humira I would feel sometimes like I wanted to quit fighting, but Humira has given me some new life/hope.

PS:  If you’re on it, drop me a note.  I’d love to hear your Humira story [or your biologic story] and if it made you gain or lose weight.  Also, I would love to know what you do for the thinning hair.

How long do I have to wait for some biologics?

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I’m having a bad day.  Hell, I’m having a bad week..month.. year.  I alternate between being a super stoic and what feels like a big baby.  On bad days, I can be short-tempered, ignore you, or be downright mean.  I feel sorry for myself way more often than I want to.  Tonight is injection night and I don’t want to stick that needle full of antifreeze into my thigh because today I don’t have much evidence that it is working.  What it does do is make me crazy, exhausted, and sick.  I guess it’s working, because I am making it through each day.  I’m still working two jobs.  I am keeping my head above water.  My feet don’t feel broken when I step onto them each morning, but this disease is so capricious in its expression that I feel like I wake up every morning on some demented game show– What the Fuck Hurts Today?  This month, the background music has been the pain in my neck that makes me walk funny and behave like a manikin.  A few of the contestants have been the nails in the tops of my feet, my aching and useless left thumb, and my left knee.  Even my jaws hurt.  The day I saw the doctor last, must have been a good day, because I gave myself 2’s and 3’s.  I am not sure I have had that good of day since.  I find myself wanting to tell this doctor how great it’s going.  I don’t want to tell her that I feel like I am failing on Methotrexate.  I did ask, “how long until I feel good again, like, I don’t hurt?”  She said, “now come on, you’re fifty, it’s not ever going to be perfect.”  I don’t want perfect, but I do want my life back.

I don’t want my blog to be a big whine fest [especially since I am not supposed to even have wine with Mtx].  I don’t want to have to ask for an antidepressant.  She already gave me Tramadol for pain, so clearly she is pointing me in that direction.  I have always been the no-nonsense girl who finds depression so self-indulgent.  If you have time to be depressed, I’ve always thought, you don’t have enough to keep you busy.  But now, I find my boyfriend telling me I need to watch out for depression, like it might be sneaking up behind me.

And other than my sister’s good fortune today, he was the bright spot in my day–my Bean.   Tonight, he went to the drugstore and then to Wal-mart and bought me all kinds of goodies.peas ice bag tens

Icy Hot patches, disposable tens units, peas ice bag, ice bags to fill [large and small], and so much relief in a couple of bags.  So, now, I sit in the corner typing as my neck crackles, ripples, and pops in mini spasms from this tens unit, appreciating someone who took the time to take care of me today.  It makes me seriously tear up in gratitude.  ❤

Progress

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Five weeks into the Methotrexate and it’s time for an update.  My rheumy doc told me that there was a strong possibility that by the time I came back to see her in 5 or 6 weeks, that I might feel no improvement, that it could take a bit longer than that since this dmard is very slow acting.  She said progress might be imperceptible and I might need other people to verify it, for instance, someone in my family saying “yeah, you are not limping as much” or “you don’t seem to be talking about your feet as much.”  So, I was not expecting miracles and was ready for no progress at the return appointment which will be in about a week and a half. Color me surprised, then, when I could feel noticeable progress at five weeks!  I’ll bullet it for brevity’s sake.

  • When I wake up in the morning, I am not walking on broken feet and limping.  In fact, some mornings, I don’t even think about my feet.
  • I don’t wince every time I pull up my pants.
  • I can button my clothing easier.
  • I can walk distances again.
  • I want to walk.
  • I am not as stiff when I rise from any period of sitting.
  • I am taking much less Ibuprofen.

Now, I still have my needs.  My neck is killing me right now.  My knees still hurt when I go up and down stairs.  My thumb joint still aches and throbs at times.  But, in all, I am really happy with my progress.

The side effects of Mtx have not been unbearable.  I have some occasional stomach upset [mild] and some mood distress [mild to mod] that is quite interesting in the way it manifests.  Most people are slain the day after their dosage [which is when gastrointestinal stuff happens if it is going to], but I have like a 3 or 4 day delay.  For instance, I would take the Mtx on Sat evening and then it would hit me by Wed of the next week.  What happens is exhaustion that is akin to swimming in Karo syrup- feeling like lifting a hand is work but I don’t have the liberty to rest since I work two jobs, so I keep going and then everything ends up making me cry.  Well, I don’t actually cry in front of anyone but Bean and I am sure he wishes I would stop it, but there you have it.  Weird, but doable.  

What has helped in addition to the Mtx is taking my supplements correctly and remembering to take my prescription Folic Acid.  Thank you, Bean, for buying me a large pill manager compartment thingy so that I can remember to take them all each day at the right times. I take Armour Thyroid, Folic Acid, B vitamins, fish oil gummies, Krill oil capsule, Curcumin, Anti-inflammatory bio caps, 100 vitamin C, & vitamin D in addition to my 1x week Mtx.

I think I will tell the doc to ramp it up a notch when I go back because I need to get in shape for summer hiking.  I’ll go from 10 to 15 or something.  I have googled this whole mood thing with the Mtx. but I would like to hear if anyone else has experienced mood alteration or that kind of strange exhaustion on this drug.

Clumsy Hands and Broken Feet- A Diagnosis

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This week I had the wind knocked out of my sails.  I was diagnosed with RA.  Rheumatoid Arthritis is an autoimmune version of arthritis where your body attacks the synovial lining/cavity of your joints and sometimes other organ systems like your eyes, lungs, vascular system, and heart.  It manifests as pain that usually begins in your hands and your feet-exactly where mine started abruptly this past fall.  I may have had RA for a while, but something triggered it prior to November.  I suspect a teeth cleaning that left me with swollen sore gums for weeks.

I already have one autoimmune disease- Hashimoto’s Disease [autoimmune hypothyroidism]- I wonder if there is a limit, like how many AI diseases can you get at one time?  I hope there’s a limit.  I found out I had Hashimoto’s when I was in my late 20’s.  I’m in good company, ie… there is a genetic predisposition, since both my sisters and my Mom have it and my late maternal grandmother did as well.  I am cool with this; I have it on lock.  I know this disease inside out, I self-titrate my natural thyroid [Armour], and I ignore well-meaning practitioners who tell me that my TSH is too low while disregarding other key blood markers and my physical well-being and self-awareness.  I am not afraid of Hashimoto’s.

My Grandfather suffered from Dermatomyositis [another AI disorder].  My sister has RA.  Yeah, that should have been a clue when my joints caught fire.  But, it wasn’t.  That was her disease; and one that I never planned on claiming.  I did not have RA- I like to hike, I’m active, and I always have at least 2 jobs.   I climbed a mountain in only average shape [for a 49-year-old] in April.  I run on my treadmill even when my knees and feet hurt. I don’t like to take drugs of any kind and I do like to eat clean [although I struggle with a love affair with sugar that I am seriously trying to end]. I had just lost more than 40 pounds and I was feeling great.  I was excited to turn 50!  RA was an image in my mind that did not fit with the image I have of myself.  So, when Dr. Belhorn said she was positive that I have it, she might as well have punched me right in the gut.  When I got into my car after that appointment, I did not have the key turned in the ignition before I was sobbing.  My denial had been so complete that I had an explanation for each puzzle piece.  My knees were stressed from the Zumba, my joints hurt because I was allergic to wheat and all of this was related to my skin rashes and eczema.  I even thought I might have lupus or psoriatic arthritis, maybe reactive arthritis, but I was pretty sure it wasn’t RA.

When you google RA images, you see this awful picture of a hand that might belong to the cannibalistic witch who locked Hansel up in a cage.  I can imagine that gnarled hand reaching in to retrieve the bones he would hand her when she tried to determine his fitness/fatness for cooking.  I know that it is not a death sentence, not directly, but it feels like a sentence of some sort– a sentence of having to put toxins into my body to prevent deformity and disability; a sentence of having to take handfuls of pills that make sick, a sentence of being tied to doctors [who belong to a profession I collectively mistrust].   So, I am researching and finding that there are a lot of weedy paths that you can get lost on and lots of scammers looking for an easy mark.  It’s hard to know whether to trust the doctors and researchers because to hammer-wielding people, everything looks like a nail.  I am not even sure if that analogy makes sense here, but I keep seeing clinicians holding hammers as I do this research.  I know that a plant-based diet, low in sugar and red meat that limits grains and sugar is optimal.  I know that fish oil, especially Krill oil helps.  I know that I need to stop being so angry because inflammation is a factor of seething anger, but I don’t know exactly how to let go of the anger that I have.  It’s a simmering, chronic anger that bubbles up when I sense injustice- real or imagined.  It’s an anger that is as self-indulgent as I believe depression or boredom to be.  It’s well hidden and most people who not have any clue that it’s there.  Perhaps some more therapy is in order, but I digress.

In October I had my teeth cleaned.  It wasn’t remarkable in any way and I have them cleaned like clockwork every 6 months.  I do remember that the hygienist was a bit aggressive, there was bleeding, and my gums proceeded to hurt for weeks afterward.  I was seriously worried I might have gingivitis and I was googling away.  I followed this with gargling– salt water and sometimes hydrogen peroxide, and I switched to a gluten-free tea tree oil toothpaste.   The gum pain eventually subsided, but then the joint pains began.  I did not immediately connect the two.

November.  The first pain was in my knees.  They were a bit swollen and so tender they hurt to be touched from the outside.  I thought it was the Zumba.  It can be hard on knees.  Then my elbow was so sensitive that sometimes when I leaned on a table with it I would react in extreme pain like being hit in the elbow or shocked.  When I turned in the bed it hurt.  My hands would go numb along with my finger tips.  One day I felt like I was walking on a stone.  I said that to everyone who would listen.  “I feel like I am walking on a big rock.”  Then, my big toe swelled and I could not bend it.  I thought I had gout.  Then my fingers began to hurt.  My ring finger joint swelled so big I couldn’t wear a ring.  It ached.  My thumb and knuckle were swollen and hurting.  I found some days I could not button a shirt.  Every day, pulling up my pants after using the bathroom hurt because it required that I hook my thumb and pull upward. And the foot pain… as soon as my feet hit the floor in the morning, I am reminded that my feet are broken.  It feels like walking on bloody stumps, or on feet that someone has smashed and broken the small bones in the center, under the balls.  This pain makes me walk funny and does not subside until I manage to walk it off so to speak about halfway through the morning or by lunchtime.  By evening, it is returning once I find myself sitting and then stand again.  The stiffness is from my hips down through my knees and into my feet right through to the arches.  The foot pain is the absolute worst.

I would still not have gone to the doctor about this– again the denial– if it were not for an acute shoulder incident in February that I related to a fall in the snow [but was really most likely a shoulder flare].  When I told the GP of my other joint pains, she diagnosed a rotator cuff injury, but did some blood work.   The rheumatoid workup results led me to a referral to a rheumatologist.  Before that appointment, I researched everything but RA.  Even sitting across from Dr. Belhorn, my denial persisted and she called me on it as I cross-examined her about the discoid rash on my thigh, the possibility of lupus, Dermatitis Herpetformis, and reactive arthritis.  She said that she would highly suspect RA in someone with my symptoms and an elevated RA factor.  My factor is not subtle, though, it is almost 200 and that is indicative of only a handful of illnesses in the absence of a positive ANA.  The family history cinches it.  So, she took more blood and x-rays and pending the outcome of those results, she will advise on how aggressively to proceed.  At this point, I am hoping for Plaquenil only, but I suspect she will also recommend Methotrexate.  I am pouring over RA blogs to get a sense of what works for different folks and what kind of side effects are widely experienced.

In retrospect, I see things now that could have been clues.  I felt last year like I was losing upper body strength when I could not win an arm wrestling match.  It literally startled me as I have always been pretty strong physically. My inability to work the latch on my grandson’s car seat could have been a clue- I became more and more frustrated by this and had to ask my other grandson to do it for me [I blamed the car seat].  I had trouble with lids, I dropped things more.  One morning this fall, I dropped my coffee cup for no apparent reason.  It just fell from my hand shattering and spilling while my students rushed to help me.  I have broken a bowl and two cups, at minimum, in the last 2 months.  I fall a lot.  There are so many and they keep coming back to me.  The day I was diagnosed, I felt defeated.  My pain felt worse and I felt sorry for myself.  That was only two days ago– it feels like a week–but I am bouncing back already.  I found a cool blog:

http://www.rheumatoidarthritisguy.com/

On it, there is a page of a mosaic of all sorts of people who have RA.  They are overwhelmingly female, but they are quite diverse and they don’t look like cannibalistic witches.  They look like normal people of all ages who are doing interesting things.   That was a turning point.  I said, “okay, I can do this.”  Thanks, RA guy [& all the people who submitted their pics and profiles].  I needed that.