Home Forums Personal History and Progress Threads Whaleharbor's Story

Viewing 3 posts - 1 through 3 (of 3 total)
  • Author
  • #300493

    At age 23, just after college when I should have been “setting the world on fire” I was having one of the most difficult times of my life.  I had moved home with my parents to intern at a nearby company while I was working on a Master's Degree.  My grandparents and parents had built a home together…that's how I grew up…so my grandparents were as much my parental figures as my own real parents.  My grandfather whom I loved so very much was dying of polymyositis (yes an autoimmune disease) that had been untreated for 20 years…because the only treatment offered to him at the time was prednisone and he couldn't take it. I would go to bed at night not knowing if my beloved Grandfather was going to have “an attack” and we would have to rush him to the emergency room in the middle of the night.  My sleep was interrupted with such trips multiple times a week….and when he was in the hospital I went to see him every chance I could…while still keeping my rigourous work/study schedule…Meanwhile, my father was then diagnosed with cancer (he died about a year later).  My grandmother on my dad's side had just died of breast cancer.  I was working as an intern at a demanding job.  I was travelling 2 hours one way to go to school to get my Master's Degree.  It was the “perfect storm” of stressful events. 

    Looking back on it now I realize that I had been so tired during those months.  I thought it was the stress of it all and my crazy schedule.  I think it was the fatigue of an autoimmune disease. I had also developed unrelenting diarrhea…which I thought was also related to the heart break and stress that I was going through.  My hair was falling out…my hair dresser kept commenting on it…but I never had time to think of me…I was just trying to hold everything all together, for myself and my family.

    My grandfather finally succumbed to his illness and a few weeks later the pain began in one finger.  Then a weird nauseau and vomitting event began and then a few days later the pain exploded to my entire body.  I was immobile.  I couldn't dress myself, I was vommiting, my hair was falling out…I began taking aspirin 16 a day was doing nothing except for teaing apart my stomach, went to doctor after doctor…it was all I could do to just keep going.  My mother had to brush my hair because I couldn't lift my arms.  I don't wish that kind of pain on anyone…it was horrific and I was incapacited.  I finally went to my family physician who diagnosed me (his wife has RA)…he sent me to a rheumy who diagnosed me at the first meeting and confirmed it with blood work.   No one had any doubt…it was classic RA and severe RA.

    I am convinced that the unrelenting stress and grief caused my RA.  That was 17 years ago.

    So the first few years of treatment were rough.  Differing doses of prednisone and so many different nsaids, that I have forgotten them all.  My pain was less but the flares were frequent and it wasn't unusually for me to show up and my rheumy's office in the middle of a flare after a sleepless night begging for a shot of anything to make it stop.  My memories of these dark years include the following:

    I was dating my now husband at the time in the beginning and I remember going out on a date to dinner.  We'd have a nice dinner…say it took about an hour in a restaurant or so…and then getting up was an amazing chore…let alone walking to the car.  People would stare.

    I remember my co-workers not understanding and laughing at me.  One person called me gimpy one morning.

    I was lamenting my predicament with my “friends” at work when one of them told me, “Geez I wonder what would happen if something really bad happened to you.  If you can't take a little arthritis, I don't know how you are going to make it in life”  I quit talking about it to “friends” or anyone other than my family because of that.  Most people don't even know I have RA.  I've kept it very private since…only recently have I begun to talk about it.

    I remember my father in his last year of life…I forgive him for this because he was battling a terminal illness…but I was so young, so scared for myself too.  I remember a conversation with him and my mother were I relayed my fears and my father got angry with me and told me he wished that “all he had was arthritis.”  I cried a lot in guilt for sharing my predicament with him…and in anger for anyone's lack of understanding of the dire and unrelenting situation I was in.

    Finally, I recall the day I went to my rheumy's office to beg for something else.  I had read about MTX and wanted it…or anything.  I couldn't take it any more.  My rheumy refused…told me it was to toxic for someone so young.  He told me I would have to live with the prednisone and nsdaids and that the only other thing he could do was give me opiates to keep me “comfortable.”  He yelled at me and to me to be tough.  I never took the pain meds and from that day forward became very stoic about my pain.  I hid it so well, sometimes I even hid it from myself.

    The first about 6, 7, 8  years were a series of flares that were mildly managed and declining health that ended up with chronic sinus infections that would not go away.  My family doctor put me on one antibiotic after another…weeks turned into months until the final dosage of biaxin which caused an ulcer in one dose.   I thought I was going to die. It was the straw the broke the camels back in my stomach.  I was unable to take any meds after that.  My rheumy had to give me injections to control my arthritis and I had to take tagamet for about a year.  I lost tremendous amounts of weight because I could not eat a thing.  I began to lose hair again and had to cut my hair short…

    But something miraculous happened…slowly slowly…the RA was going away.  Was it the months and months of antibiotics that I had been on?  Was it the lack of eating?  Was it all of it?  Over about a year of not taking anything except injections of nsaids and tagamet, my RA vanished and I was symptom free (not even an aspirin) for about 7 years.

    Then the pain started slowly…and the RA returned…it's never been as bad as at first but certainly still a challenge.  Fortunately, I began meds pretty quickly.  Interestingly my rheumy who had refused to put me on MTX before suddenly was pushing MTX over and over and over…this time I didn't want it.  I knew about the side effects.  He pushed and pushed and pushed and in desperation, I went searching for other therapies on the Internet and found the roadback.org.  I could have screamed and cried and laughed all at once.  As a teenager I had been on tetracycline for acne for years with no adverse effects.  Could it be true that something so benign could be the answer to my prayers.  My rheumy agreed to put me on Doxy 20 (twenty) mg per day…no more…with food.

    Not enough of a dose you say?  Well, I got better, much better very quickly (within a month)…my blood work even proved it.  I even had noticeable periods of herxing with periods of getting better, but then I plateaud and then I had a fall (high heel on a overly waxed floor incident) which lead to a torn ligament, torn meniscus and knee arthroscopy.

    I believe that my surgery (which was awesome) was enough of a stress to induce more flares…again my rheumy was pushing MTX.  He refused to increase the dose of Doxy or to switch to mino to control the flare…so I found another rheumy who took x-rays and he said that the damage I had in my hands showed severe RA and that it nauseated him and that he recommended MTX and Embrel.  I was devastated.

    Again I turned to the roadback …re-read “the book” The Arthritis Breakthrough and found Dr. T.  I made an appt, flew to Boston and he assured me that he could help me.  He was even encouraged that I had spontaneously remitted before…apparently something very, very rare.  He agreed to call my rheumy to explain things.  I made an appt with my rheumy expecting the worst and he agreed that he would be thrilled if the minocycline could work for me.  I'm not a cryer, but the relief of it all was overwhelming…I began to cry like a fool in his office.  Dr. T must have worked a miracle with him.

    So I am not at my first days with mino and have had challenges.  The dizziness at first was awful.  But you all saw me through it.  You told me that many others had experienced it and that backing off and restarting would help.  It did and that has passed.

    Then came the “emotional herx.”  A deep deep depression and crying spells…I don't cry…not that there's anything wrong with it, I just don't.  I couldn't take it.  I backed off again and restarted and it abated.

    Then came the gas, bloating, heartburn and diarrhea.  No one told me about the probiotics.  I'm currently tweaking the dose of minocycline and tweaking the probiotic dose to see how I can make this work. 

    As of today I'm on 100mg minocycline every other day. 5 mg of prednisone every other day, 1 probiotic every day, a lot of fish oil every day, 200mg celebrex twice per day.  I am arthritis-wise feeling much, much better.  Stomach-wise I'm better but not quite where I should be…I probably need to increase probiotic.  Any input on your experience with your tummy and minocycline would be appreciated.

    The doxy and mino have both helped me tremendously….I have no doubt that for me this works.  I guess I just have to be patient and tweak it.  I just pray that I can manage my tummy so I can take it because for me it really does work.

    I am also seeing an acupunturist/net practioner who is helping me a lot too. 

    — whaleharbor

    100 mg Minocycline every other day (Actavis Brand)


    So I just reread my previous post…how dark it is…these past few months have been difficult, but I must admit that.

    1.  My hands are more flexible with increased range of motion.

    2.  My neck feels better…entire upper back  area feels better.

    3.  I still have muscle pains but they are greatly lessened

    4.  Emotional herx has gotten much better but I think that for me personally acupuncture and NET have helped me psychologically.  It's tough living with a chronic disease…it takes it's toll. So I had to get myself some help in that regard..and it has helped me.

    5.  I still wake up tired but not quite as exhausted.

    6.  I've gained weight :shock:…ok so I didn't mean to do that…but I think it's a good sign.

    6.  Tummy is hanging tough…probiotics are the sh&&823t!:dude:

    Got a ways to go…but I'm still traveling on the road back.

    — whaleharbor

    100 mg Minocycline every other day (Actavis Brand)


    I had a few really horrible days…I didn't even post on the board …I think I just sort of hid or something.  I had been seeing an acupuncturist (which helped tremendously) and she went on vacation. 

    How dare she.;) (kidding).

    But something pretty amazing happened….the pain and swelling went away and I seem to have made a pretty significant stride forward.  Was it that the acupuncture was helping and she left for a while and I got worse or was it a herx…I killed off some critters which got me worse and then better?  Who knows…but overall I am better.

    I still have quite a ways to go and am frankly in a bit of pain today…but overall am getting slowly…ever so amazingly slowly better bit by bit.

    — whaleharbor 

    100 mg Minocycline every other day (Actavis Brand)

Viewing 3 posts - 1 through 3 (of 3 total)

The forum ‘Personal History and Progress Threads’ is closed to new topics and replies.