emotional health

Messing with the meds that mess with me!

Ellen Galo Community Member October 30, 2012
  • Hello to all -

    I've been on and off and stretching out Enbrel this year as I try to find some way to balance benefits and side effects... here is the story of yesterday and today after I had been off for the last 3 1/2 weeks.

     

    Wellk it finally got so my feet were so painful I could barely walk yesterday – felt like I’d had a bullet shot right through each 3rd metatarsal (kind of like stigmata – which is what first happened with my hands, years before RA, on Good Friday yet!  Weirrrrrrrddddddd.

    So – I finally tried a HALF-dose of Enbrel.  And it was kind of interesting – good things and then not so good things, as the day went on, but in slow motion so I could kind of at least track and follow and think about what was happening.  Fact#1: my feet started getting very slightly better in mid-afternoon, heralded by a major hot flash (which I get sometimes anyway after Percocet, and I had had a ¼ tab Perc the night before.  But it was really too early for that to happen. 

    Fact#2: feelings started coming back.  When I’m off for a long time I build up a mental barrier as much as possible against pain etc.  When I do the Enbrel that comes down.  And I think that’s why I came CRASHING down the last couple times.  Too fast, too hard. Easy doesssss iiiiit. 

    Fact#3: Around dinner time: gradual onset of fairly major headache, not a sinus headache but something I did have (lesser then) after my first shot of Enbrel, but never had much since.  Lasted about two hours.  Tried lying down; playing piano (hadn’t done that in a few weeks-evidence of something wrong).  Then I started to get the slightly breathless feeling, like someone had given me a hard slap on the back and I couldn’t quite get my breath.  Except that I could.  It just wasn’t satisfying.  Like drinking a sweet drink, but not getting the sweetness you expect. Hard to describe. 

    Fact#4: by bedtime the quasi-depression had set in.  Cried a bit in frustration.  Why do I have to feel worse in one way to feel better in another?  It was only because of the walking problem that I finally bit the bullet.  Don’t want to go there.  But, yes, I guess everything has its price. 

    Fact#5:  slowly fighting this, trying to think back how I have handled depressed episodes in the past.  The best solution was always something creative (the hardest thing with my type of job is the lack of creativity in general, but not always in particular – minor ways at least).  Thankfully it was a very quiet day at work (Tuesdays and Thursdays are sometimes very light).  Found the most satisfaction in abstract drawing.  Funny, I have felt impulses to paint, but I really am lousy at that.  (haven’t tried the abstract business – but drawing is a whole lot more erasable!  So maybe I will work on that…)

    Not that I don’t have all different kinds of ‘projects’ lined up – I just haven’t either had the motivation or energy to do them when I had the time.  And sometimes when I had the time, I didn’t care….. just apathetic.  (Pathetic!)  I am really hoping retirement (next September) will help me balance my life better, but I am trying my best not to wait until then, but to do what I can now to work towards that.

  •   So - another life in the tightrope-balancing act of an 8-year veteran of the RA Wars!   I WILL not give up!  (at least not for long....)

     

19 Comments
  • V
    V
    Health Guide
    Oct. 30, 2012

    Hi, Ellen,

     

    Balance is really the thing, isn't it? We RA dancers have to be flexible, too.  We never know what our days are going to entail.  May be good, may be bad, may be bleh! Tongue out

     

    The important thing, I think, is that we never give up.  We usually find a way, eventually, to make our days count and to enjoy the blessings in...

    RHMLucky777

    Read More

    Hi, Ellen,

     

    Balance is really the thing, isn't it? We RA dancers have to be flexible, too.  We never know what our days are going to entail.  May be good, may be bad, may be bleh! Tongue out

     

    The important thing, I think, is that we never give up.  We usually find a way, eventually, to make our days count and to enjoy the blessings in our lives.  I know it isn't easy, Ellen.  Thanks for sharing your struggle with us.  This particular post made me feel almost "normal"! Wink Hang in there, Ellen, and we will hang in there with you.

     

    Peace,

    V

    • Ellen Galo
      Oct. 30, 2012

      Now, V, that makes me think maybe I'm 'normal' too!!  Thank you ...

    • V
      V
      Health Guide
      Oct. 31, 2012

      LOL You are definitely "RA Normal", Ellen!

       

      V

    • Ellen Galo
      Oct. 31, 2012

      Oh I left out my temper blown at my poor husband who tries but cannot understand, bless his heart. .  . which sobered (scared) me enough so I finally focused on just calming down.  Every day is a new day ....  and sometimes it's better not to wait, just start a new day NOW.

    • V
      V
      Health Guide
      Oct. 31, 2012

      Oh, Ellen.  We have all been there, sweetie.  Each day IS a new start.  A new chance to feel better, to be happy, to help others. You are on the right track. 

       

      Blessings,

      V

    • Ellen Galo
      Oct. 31, 2012

      Well, it's the ONLY track available, so I guess I'll just "keep ing chuggin'!"  thanks so much for your encouragement.  It's easy to get discouraged when you have a healthy, hard-working, husband who is helpful to the point of embarrassment who never loses his temper (though he's not without opinions!).

          What's the name of the kid's...

      RHMLucky777

      Read More

      Well, it's the ONLY track available, so I guess I'll just "keep ing chuggin'!"  thanks so much for your encouragement.  It's easy to get discouraged when you have a healthy, hard-working, husband who is helpful to the point of embarrassment who never loses his temper (though he's not without opinions!).

          What's the name of the kid's story about the choo-choo?   "I THINK I can, I THINK I can..."

      Yup.

      I think everything went so well for so long that I got mulled into thinking 't'would always be that way.  Yet I knew somehow, from everyone's stories that there were bound to be a few 'bumps' along the way!

  • Lene  Andersen
    Health Guide
    Oct. 31, 2012

    I know that "can't quite catch my breath" feeling - I usually get it for a day or two after my shot of Humira. I discovered that it seems to be a mix of low-level asthma and buildup of gas double release. I use my puffer more in those days, alternate Gaviscon and Gas-X, as well as hot water with a small slice of lemon. Together, it makes me less breathless....

    RHMLucky777

    Read More

    I know that "can't quite catch my breath" feeling - I usually get it for a day or two after my shot of Humira. I discovered that it seems to be a mix of low-level asthma and buildup of gas double release. I use my puffer more in those days, alternate Gaviscon and Gas-X, as well as hot water with a small slice of lemon. Together, it makes me less breathless.

     

    I'm going to throw something out there... you mentioned that your wall goes down in terms of the pain. After you take Enbrel. Could it be that the wall goes down in general about your feelings? Maybe the depression is an indication that the wall has gone down a bit, thus allowing you to feel the emotions you have about RA, limitations, work frustrations, husband frustrations, etc., etc. Maybe Enbrel allows you to connect to those feelings and have the cry you need to have. So many of us are so good that moving on with a stiff upper lip and that's necessary when you live with a chronic illness. Every now and again, however, I think it's probably not a bad idea to have a cry.

  • Lene  Andersen
    Health Guide
    Oct. 31, 2012

    I know that "can't quite catch my breath" feeling - I usually get it for a day or two after my shot of Humira. I discovered that it seems to be a mix of low-level asthma and buildup of gas double release. I use my puffer more in those days, alternate Gaviscon and Gas-X, as well as hot water with a small slice of lemon. Together, it makes me less breathless....

    RHMLucky777

    Read More

    I know that "can't quite catch my breath" feeling - I usually get it for a day or two after my shot of Humira. I discovered that it seems to be a mix of low-level asthma and buildup of gas double release. I use my puffer more in those days, alternate Gaviscon and Gas-X, as well as hot water with a small slice of lemon. Together, it makes me less breathless.

     

    I'm going to throw something out there... you mentioned that your wall goes down in terms of the pain. After you take Enbrel. Could it be that the wall goes down in general about your feelings? Maybe the depression is an indication that the wall has gone down a bit, thus allowing you to feel the emotions you have about RA, limitations, work frustrations, husband frustrations, etc., etc. Maybe Enbrel allows you to connect to those feelings and have the cry you need to have. So many of us are so good that moving on with a stiff upper lip and that's necessary when you live with a chronic illness. Every now and again, however, I think it's probably not a bad idea to have a cry.

    • Ellen Galo
      Oct. 31, 2012

      I think that's a lot of it, but it goes further.... I feel trapped in a cloud and separated from what is around me.  .  . not just "down".  And it leaves just when the Enbrel would be wearing off.  I need to be in touch with those feelings (and i did know they were there) but I can't 'deal' with them or do anything helpful when I'm 'under...

      RHMLucky777

      Read More

      I think that's a lot of it, but it goes further.... I feel trapped in a cloud and separated from what is around me.  .  . not just "down".  And it leaves just when the Enbrel would be wearing off.  I need to be in touch with those feelings (and i did know they were there) but I can't 'deal' with them or do anything helpful when I'm 'under the influence'.  There has to be another way....

          There's also vice-versa - being depressed makes you more susceptible to pain. Sometimes symptoms jump around so much, it's hard to know what to act on, other than the immediate necessity minute-to-minute, because, for instance, I'll make an appointment to get a slip for PT for my back (or knee, or shoulder), and then by the time I am able to get there, it's a different part of my body.  Although I have 'accumulated' quite a few 'regular' customers at this point.  And the problems are finally showing up on the left side as well as the right (I think Enbrel kept it in check for a period of time and it has done what it can do without further problems...)   Now it's not just my right shoulder, but my left also; not just my right foot, but my left also. Etc. Etc.

          It's one thing to cry .... and another to implode instantaneously yelling at my husband and crying uncontrollably without warning (to me or to him!)   That's not acceptable.

          So - after thinking about this, I think I probably need a medication I've used a few times for short periods in the past to get myself over this hump.  This time of year I am always thinking about family I can't see (too far) for the holidays (or almost ever) and also typically lose energy due to weather changes, plus we are in the thick of it at work...I always struggle in the middle.  Not necessary because of being busy every minute, but because everyone I work with (the faculty) are overloaded and it rubs off on me....my antennae pick up the stress, whether I choose to or not.

          some times you have to lose the battle to win the war.

          and then I read what I've written and think: why am I so whiny when I have it better than so many?  I'm still working and walking and.... etc.  but self-condemnation doesnt' help either.  But just to get perspective.

    • Lene  Andersen
      Health Guide
      Oct. 31, 2012

      y'know... I've been hearing about all the weird and "wonderful" side effects you have from Enbrel and... well. Remind me again why you don't try another medication? If it doesn't work, you could always go back to Enbrel.

       

      Enbrel was my miracle drug, but after two years the side effects limited me as much as active RA. As you know, I switched to Humira...

      RHMLucky777

      Read More

      y'know... I've been hearing about all the weird and "wonderful" side effects you have from Enbrel and... well. Remind me again why you don't try another medication? If it doesn't work, you could always go back to Enbrel.

       

      Enbrel was my miracle drug, but after two years the side effects limited me as much as active RA. As you know, I switched to Humira and it solves many of the problems and minimized the rest, making the side effects manageable. it might be worth to have a chat with your rheumatologist about some other options that could control your disease better, while reducing your side effects.

       

       

    • Ellen Galo
      Oct. 31, 2012

      It's been discussed a number of times with my doctor - especially infection - but he keeps saying the same risks happen with the other meds.  But - I'm trying to move up my next appointment and see what happens.

    • Ellen Galo
      Oct. 31, 2012

      I may get a second opinion one of these days if things don't ease up.  But the truth is, it could be scary starting something new too, not knowing what would happen.  I am 70 miles from my rheumatologist, which does not make it easy to check in with him.  There are NONE in the county.  There is another one who comes to Malone (in the other...

      RHMLucky777

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      I may get a second opinion one of these days if things don't ease up.  But the truth is, it could be scary starting something new too, not knowing what would happen.  I am 70 miles from my rheumatologist, which does not make it easy to check in with him.  There are NONE in the county.  There is another one who comes to Malone (in the other direction) from Burlington, VT.  There are several in Syracuse.  But the other thing is (and dr. brings this up too), at 61, it's not all RA, there is also OA which won't be helped by the biologics anyway.  Last time my SED rate was checked it was 29.  So I think there may be something else going on.  He said last year he thought my blood markers indicated my body might be morphing toward MCTD (mixed connective tissue disease) and asked me if I had symptoms of Raynaud's.  I didn't then but there have been a few instances since then which might qualify...The only med I know of for MCTD is prednisone - and I can tell you that in September when I had the major flare, the prednisone was a godsend.   Not to keep taking it, but it did save the day.  And so much seems to be dependent on stress.  An acupuncturist I go to periodically (I have been meaning to make an appointment) told me, "You stress easily but you heal fast" - i.e., a fast responder in both directions.  But I can tell you inbetween is misery.  My brain is way ahead predicting the worst possible 0- at the same time it knows that 'outside the box' focus is often helpful and gets me off the roller coaster - if I can just step back. So I am also cautious about making a major change until push comes to shove.  But _ I am just about there (I think!) being calm at the moment.  My doc talked about Orencia at one time as being less apt to trigger infection (but you sure wouldn't know it from the ads and info available!)  And he said, "you can get the infusions in my office! " with this smirk on his face (but my PCP said, I could have them there - 2 blocks from my work place).  They are 15 minutes long. Why should I have to drive 70 miles each way to get a 15-minute infusion?  The hospitals here don't seem to do it (no rheumy around to set it up, I guess).  Things get a bit tortuous in a rural area.

    • V
      V
      Health Guide
      Oct. 31, 2012

      Ellen,

       

      I know the meds are scary, but I have to share my experience with you.  I was on Humira for six months.  After three months it started helping, then Bam!  It stopped working.  My doc didn't mess around w/any of the other TNF inhibitors.  She moved me directly to Orencia. It has been a good drug for me.  Without it,...

      RHMLucky777

      Read More

      Ellen,

       

      I know the meds are scary, but I have to share my experience with you.  I was on Humira for six months.  After three months it started helping, then Bam!  It stopped working.  My doc didn't mess around w/any of the other TNF inhibitors.  She moved me directly to Orencia. It has been a good drug for me.  Without it, I am quite sure I would be confined to my home or in a wheelchair.  I hope it continues to work, but I take one day at a time.  I mention Acterma as the "drug of last resort" to my RD the last visit.  I am a bit afraid of it.  My RD said, "No, there is no drug of last resort.  There is always something we can do."  I love my Rheumy.  Her mother has RA, so she understands more than most, I think.  Don't be afraid to try a new med.   Quality of life is so important.  When I was on Humira, I was always on the verge of a sinus infection, and it was a bit miserable.  I have not had that issue while on Orencia, and I have not had any infections, either.  Knock on wood!  People respond differently to different drugs.  Maybe you should just talk to your rheumy about it.  BTW, I started with an Orencia infusion.  The next day, I was instructed to give myself a shot of Orencia.  Since that time, I inject once a week.  You can do the injections if you want to.  You don't have to do the infusions.

       

      Hugs,

      V

    • Ellen Galo
      Oct. 31, 2012

      That's a really good point, I did hear it was now available self-injected.  I am always onthe verge (or more) of sinus nifections with Enbrel, so I know what you mean.   I think I needed to hear this from someone who has been through the switch.  I did call the doc's office today and they said right now they have no openings before my appointment...

      RHMLucky777

      Read More

      That's a really good point, I did hear it was now available self-injected.  I am always onthe verge (or more) of sinus nifections with Enbrel, so I know what you mean.   I think I needed to hear this from someone who has been through the switch.  I did call the doc's office today and they said right now they have no openings before my appointment in January, but if he approves, they will squeeze me in somehow.  And he will do that.  A few weeks ago when this all started to come apart and I called, they wanted me to drive right down.  But it didn't feel like a good idea to me at the time, so I said just let me talk to him, and he thought my idea of trying a half-dose after waiting as long as possible was a good idea.  I thought, I have to give it one more shot to make sure I should switch to something else now.  I am convinced!   Even though he says they all have similar risks (except infection with Orencia, based on his experience with one other person where they got an infectious disease specialist involved), I know they all work through different mechanisms, and I think the Enbrel path is just bottomed out with me. 

      I think you just hit the nail on the head, friend!  For some reason, I sense the Orencia choice might be better for me than Humira. Time will tell.

          How often do you do the shots?  Is it once a month?  Do you feel yourself slide toward the end, or what?   And how long since you started?

           THANK YOU!

    • V
      V
      Health Guide
      Oct. 31, 2012

      Hi, Ellen,

       

      I inject Orencia once a week.  I do mine on Tuesdays.  I take my MTX on Fridays.

       

      I started out with the infusion to boost the levels.  I know this sounds hard to believe, but I was so sick when I went for that infusion, and after the first infusion, I felt better!  I am seronegative, and my inflammation markers aren't...

      RHMLucky777

      Read More

      Hi, Ellen,

       

      I inject Orencia once a week.  I do mine on Tuesdays.  I take my MTX on Fridays.

       

      I started out with the infusion to boost the levels.  I know this sounds hard to believe, but I was so sick when I went for that infusion, and after the first infusion, I felt better!  I am seronegative, and my inflammation markers aren't ever that high, so when they are above normal, my doc takes notice.  My SED rate was 25 and my CRP was 7.  After about two months on Orencia, my SED rate is 8 and my CRP is .9.  Humira never worked that well for me.  Orencia also helped me with fatigue.  I'm not saying that I don't get tired and that I don't have fatigue, Ellen.  BUT, it is so much better than it was.  I have permanent damage due to a delayed diagnosis, so that can't be "fixed" by Orencia, of course.  The shots of Orencia don't hurt, either.  The needles are small. You inject at a 45 degree angle.  There is an air bubble in the syringe, and that is normal.  It seems to keep the med from "leaking" back out.  Not sure really, but I know it is supposed to be there.  I have read that Orencia usually takes longer for Orencia to work than other bios, but that was not the case with me.  I felt better immediately.  For the first two months, the Orencia seemed to "wear off" two or three days before the next injection was due.  Now, it lasts almost the whole week...it wore off on Monday this week.  I inject on Tuedays.  I started Orencia on July 13th.  It was a Friday, too!  I told the nurse it was a lucky day for me.  ;)

    • Ellen Galo
      Oct. 31, 2012

      NOw that is really interesting!   Friday the 13th has always been a good day for me (my one child was born on Friday, April 13, how could it be a bad day?)   Enbrel worked fast for me - but you know, I had a major panic attack for two hours the first injection I gave myself at home.  And it had nothing to do with being afraid of it,...

      RHMLucky777

      Read More

      NOw that is really interesting!   Friday the 13th has always been a good day for me (my one child was born on Friday, April 13, how could it be a bad day?)   Enbrel worked fast for me - but you know, I had a major panic attack for two hours the first injection I gave myself at home.  And it had nothing to do with being afraid of it, that time.  I thought I'd never do it again, but by 3 days later, something told me, it's good.  The side effects for the most part were relatively mild as long as I did the shot about every 5 days (not really twice a week).  After several years, I began to get less benefit.  But having fibro as well, sometimes it's hard to tell what is what.  But I actually got more tired and achy after the shot for the first day, better the second day, and back to 'normal' on the 3rd day.  i was able to go without it for 4 - 8 weeks when necessary (for surgery, etc).  in fact, if I did 2 shots a week, I would end up with infection within 2 months or less.  I went last winter with only 4 shots in 3 months.... but I paid for it later.  Still I don't regret it.  I would just get sick so fast with sinus or several skin infections, on and on.  Then I got a MRSA abscess on New Year's Eve 2010, just before a 4-day trip.  It required surgery, even after antibiotics (I could tell it wasn't superficial from the start).  I got one skin infection on my areola one time, in my groin area another time (OK, Lene, I won't say 'weird' again!).  I loved it while it worked, because I could determine the schedule myself and not be tied to any doctor's office schedule (even aside from travel).

      So - this sounds better and better...I would have switched last year but doc wasn't sure.   And he has an excellent reputation and track record.  I talked with one woman in the waiting room (great place to trade stories when you're waiting for a LONG time!).    She was at death's door when he diagnosed her with sarcoidosis, no one could figurer out what was wrong.  After an initial period that was kind of a wrestling match, we did seem to understand each other and both listen.  So that is good, especially because of geography - there is not a lot of choice!  After the Remicade fiasco, I went on my own for about 6 months, talked with a lot of people and read up a lot and decided on Enbrel.  I went back and told him that was what I wanted to do and he said fine, the nurse will set up you and show you how.  So I think he trusts my instincts up to a point, and I trust his expertise up to a point.  Good combination.

    • Ellen Galo
      Oct. 31, 2012

      By the way, once difference between you and me is that I am seropositive, not only for rheumatoid factor but also for anti-CCP antibodies.  That's supposed to mean increased 'aggressiveness' and risk of joint damage, and I did have damage to wrist and ankle by the time it was definitive.  But my doc I think has been surprised that it hasn't been worse....

      RHMLucky777

      Read More

      By the way, once difference between you and me is that I am seropositive, not only for rheumatoid factor but also for anti-CCP antibodies.  That's supposed to mean increased 'aggressiveness' and risk of joint damage, and I did have damage to wrist and ankle by the time it was definitive.  But my doc I think has been surprised that it hasn't been worse. (I love to upset people's expectations!)  

    • Lene  Andersen
      Health Guide
      Nov. 01, 2012

      yes, the Biologics all have more or less the same risks in terms of e.g., infections, but your response to them in terms of other types of side effects - the ones that make your life not fun at all - may be different. I'm going to be blunter than normal for a moment and opine that your rheumatologist's statement about how some of your problems may be OA is,...

      RHMLucky777

      Read More

      yes, the Biologics all have more or less the same risks in terms of e.g., infections, but your response to them in terms of other types of side effects - the ones that make your life not fun at all - may be different. I'm going to be blunter than normal for a moment and opine that your rheumatologist's statement about how some of your problems may be OA is, I think, a bit of a copout. If you do have RA, controlling your disease would increase your quality-of-life and that's the point of treatment. Since Enbrel (when you do take it and after the side effects simmer down) increases your function and quality of life, clearly there is a point to treatment! Is your disease morphing into something else? It's possible. Are you a complex case? Definitely. But unfortunately, I don't see him fighting as hard as I think he should help you. A second opinion might be a good idea, but is obviously logistically difficult. Still, I think you should consider it.

    • Ellen Galo
      Oct. 31, 2012

      I just did a double take on your comment about gas and asthma.  I had REALLLY bad gas for a couple of weeks - I quit eating milk with cereal and it seemed to get MUCH better.  But milk at other times bothered me less, and I finally had a bowl of raisin bran with milk this morning for the first time in a couple of week and am fine.  But I was...

      RHMLucky777

      Read More

      I just did a double take on your comment about gas and asthma.  I had REALLLY bad gas for a couple of weeks - I quit eating milk with cereal and it seemed to get MUCH better.  But milk at other times bothered me less, and I finally had a bowl of raisin bran with milk this morning for the first time in a couple of week and am fine.  But I was chewing up the Gas_X and it didnt do much at all.  Cutting out the milk helped more.

      Then I thought it must have just been some bug that was going around.  My stomach continued to be very acidy even afterward (i.e., without the gas - which had felt like a huge balloon under my ribs!   Why do you think there is more gas at that time?   that's a new one on me.  I've had digestive issues for a LONG time, and gas too, but never quite like that.  It definitely made it harder to breathe. 

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