Tag: methotrexate

Humira Update

I think I might be able to see remission at the end of this tunnel.  I still have some thumb pain and some ghost pains in my wrist, but my feet are easing up, as is my hip.  I’m at 20 mg of MTX weekly, 40 mg. Humira every 10 days, 400 mg. Plaquenil daily, and still hanging in with 5 mg. Prednisone a day.  The proof in the pudding will be when I can completely come off of the Prednisone.  I might have to go weekly on Humira to do that, though.

Humira is a weird drug.  I do sometimes have what I call the Humira hangover where I feel wiped out the day of or after an injection.  Sometimes it’ll be delayed a few days.  I also have strange ear fullness akin to pain and sore throat and some increased allergy like nasal symptoms.  I guess that is a small price to pay to be able to hold a cup again, get dressed, walk.

I was virtually pain free the week before school started again, but I guess stress really does exacerbate symptoms, so starting back to school has been a bit of a set back.  I am just trying to get enough sleep each night.  The extra exercise on school days is good though.  I walk 7500 steps just during a reg school day and it doesn’t take much extra to get 10,000.

I’d like to hear from you if you take Humira, and especially if you take it for RA.  Leave a comment about your experience.  Has it worked?  How long have you been on it?  Side effects?

PS:  I am starting year 19 of teaching Special Education and year 2 of teaching elementary Autism.  I love my class this year and I’m looking forward to a great year.

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

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.

Free fall

So, I took the plunge and started my new job.  I’m now an elementary school special education teacher in a 3-5 Autism classroom.  I know, right?  I have 27 years of teaching and social work under my belt.  I have dealt with nearly every special condition, trauma, behavioral set, and taught adults, preschoolers, high schoolers, but never, until now- elementary school children. It’s a foreign world and when I walk down the hall, I still don’t quite feel like I am in the right place.  These children are so little.  I have been teaching high school for almost 18 years, so when I walk down the hall I feel like Gulliver among the Lilliputians. I can’t tell you how it’s going yet, because I am still in free fall- I started January 12 by working to get my room ready for the children who would move down to a new room on January 21, but then Mother Nature intervened giving us a snow/ice day and making Jan. 20 a school day instead of a workday and voila, the children were to arrive a full day early. Egads!  I carried on though-night and day- to make it happen and I have now nine [9] school days under my belt with this group.  As I said, all in a rapid free fall of time that has been a virtual blur of learning names, IEPs, co-workers, & schedules, assessing skills and learning styles, dealing with behaviors surrounding new teacher/new room/new expectations, and finding one computer that will boot up and allow me to access CECAS, let alone project a video onto the front board.  I have three new IAs to orient and team build with who are looking at me like “how long will you actually stay,” but the school is top notch, small, community oriented, and every staff member looks happy to be there. I have had great support and I don’t have time to hurt at all.

My RA is not in remission.  I hurt, I just don’t realize it until the end of the day when I drag out to my car and when I sit down after supper.  You know it’s a lottery of sorts, so this week it’s been my wrists and hands.  Blessedly, the amount of standing and running and walking about that I do seems to be helping my feet and they are feeling okay right now- no bloody stumps.  I can’t open jars, pill bottles, yogurt packages, or milk cartons very well, and sometimes I have to ask for help, but I am super proud of the energy level I have had given three weeks of 12-14 hour workdays and maintaining both jobs.  Luckily I only had 2 plans this month and one revision for the Group Home.

I had to reapply for the state health plan, which sucks and is ridiculous since I only moved one county over and I am still a state teacher, but that meant moving my rheumatologist appointment forward and delaying further the introduction of biologics.  In my imagination, I will get better before the appointment when the Plaquenil finally kicks in and joins forces with the near max dose of Methotrexate to prompt remission, but I know that is not likely.  I am putting off biologics as long as I can since I am now working in a petri dish of germs with kids hacking and sneezing all over me all day long.  I’ve had my flu shot.  Next stop- shingles and pneumonia vaccines.

I have had some really cool stories to tell each evening.  I’ve had some glittery moments where I think I am exactly where I am supposed to be, but I have also had a couple mornings where I put the pillow over my head and didn’t want to get up and go back.  I’m energized when I am learning though, and I grow when I stretch and reach, so I know that’s happening-for sure.

How long do I have to wait for some biologics?

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

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.

Side Effects- Part Deux

Happy Friday!  I am soooooo happy it is Friday, because I get to sleep in tomorrow.   This week has been, well… strange.  With trepidation I started my Methotrexate treatment last Saturday and was excited on Sunday because I had a noticeable LACK of side effects.  I had the morning gastrointestinal upset, but then the rest of the day was one of the best of the week.  I was psyched to find that I could take this med without serious side effects, but Mtx is a sneaky sneaky drug.  It’s side effects are slow and covert and by the time they catch up with you, you might not even connect them to the drug.  I’m not sure if the exhaustion I experienced this week was related to the RA or the Mtx, but it was a new thing.  It wasn’t fatigue, I’ve had that and I can push through it.  No, this was the kind of exhaustion where you are not sleepy, but you feel like just lifting your arms to wipe the dish you just washed is a major effort.  It’s like maybe your arms, legs, and head just got 75% heavier and you have to get acclimated to that.  I stood at the sink last night and literally began to cry I was so uncharacteristically exhausted.  Unbelievable.  Next morning, I was fine [after getting out of bed, that is].   That’s the other thing, waking up this week was extremely hard.

Now, in defense of the Mtx., it could have been that I worked nearly 14 hours on Monday, another 11 on Tuesday, 9 on Wednesday, and then stayed up until nearly 2 Wed night having a protracted and dramatic argument with Bean.  By Wed., I was near the edge, by Thursday… I was fried.  Clearly, I need to take more time to rest on this drug.  At the very least, I need to make it a point to get to bed on time when I am working lots of hours, but there aren’t enough hours in the day sometimes for me to finish all I need to get done.  Bean says that maybe I need to be alert for depression, since my behavior and exhaustion could be related to depression [and apparently depression goes hand in hand with RA like peanut butter and jelly], but I don’t think that’s the case, because it would be all the time and not just near the end of the day 2 or 3 days out of the week.

Water under the bridge, since things got better Friday and today.  So, here it is… time to take my Methotrexate again.  I’m having some tea and millet toast to have something on my stomach and I have had a really good Saturday.  We’ll see what week 2 of this adventure brings.

I’d love to hear what others have experienced as side effects from Mtx.  Leave a comment is you’ve taken it and let me know what you experienced.  It seems different for everyone and most report less side effects with the injectable Mtx.  I am taking pills.