Personal History

[stile RA]

Well, unbeknown to me, my journey start about 9 1/2 years ago when I was 35. After years of fevers, pain, fatigue, migraines and tests and years of telling my doctor that something was wrong with me he finally sent me to a rheumatologist in October of 2008 who told me I had seronegative arthritis and said it was a precursor to full blown RA. 

I knew nothing about RA much less seronegative arthritis so I got on the internet and did some research. What I found was not very hopeful, having not only to deal with the disease itself but all of the horrible side effects of the drugs they want you to take. At the time I saw the Rheumy I was taking about 2400-3000 mg of Ibuprofen for pain. He changed me to a different anti inflammatory and put me on sulfasalazene.  In March I had to go off the sulfasalazene because it was causing severe diarhia. Because my liver enzymes were way up my dr. didn't want to put me on Methotrexate and wanted to put me on Enbrel. I told him that I wanted to check into the side effects of Enbrel before I started on it.  I decided I didn't want to take any of the DMARDS quite yet and felt like I was being backed into a corner with no options about how to manage this disease I had.

In February of 2009 I found and read “The New Arthritis Breakthrough”.  I began to think there was some hope. I was so excited about trying the AP.  My Rheumy wasn't. I couldn't find a dr. who would proscribe the Mino until June 2009.

I began my AP on July 1, 2009. 100 mg MWF. It has been 2 months now and I feel worse than I ever have and have had a significant increase in pain. I believe this is a good thing; that the AP is doing what it is supposed to. I understand that everyone is different, but I hope I see some improvement soon.  I wonder if anyone has kept track of any statistics on the lenght of time before improvement is seen.
Well, that is my story. I hope to have good news soon. My best to all who have just started their AP.

[stile RA]

Well, no change as of yet. Still experiencing pain in most of my joints constantly with intermittent days of pain/migraine/muscle aches.  The fatigue is with me to varying degrees on a daily basis and it is often difficult to make myself attend to daily life.

I am still taking 100 mg Minocin MWF. Saw my GP after 3 months and he said to stay on this regime until my symptoms subside a bit, then increase to 200 mg MWF.

It has been 3 1/2 months since I began AP but I've read it can take up to 1 year before one sees improvement, so I am still hopeful. This website has been such an encouragement and I am thankful for all of the people who share their stories.

[stile RA]

Almost 8 months have gone by. My symptoms are gradually getting worse. I have pain constantly now. It is February, cold and wet, so maybe that is contributing to my health, who knows. To be quite candid, I am terrified that I will be one of the unlucky that does not respond to AP. Whenever my minds goes down that path, I have to distract myself before I begin to dwell on the “what ifs…”.  Sometimes that is very hard to do when I lie awake in bed at night, in the dark, with my dark thoughts and wish I could escape my own skin. 🙁  I will be 45 this summer. I have been dealing with this since I was 35 and my youngest daughter was 4 years old. I know their are many who are in more dire straits then I am, so I feel guilty for feeling the way I do.

I search this bulletin for hours, but sometimes feel like I'm wading through mud, I get so bogged down in information it is difficult to find specific information. Although that is probably just my inexperience.

I go see my gp in a couple of weeks. My sed rate was up when I saw him in Dec. He isn't that experienced an AP dr, but bless him, he was willing to treat me after the GP I've had for 20 years wouldn't nor would my Rheumy. He kind of fell into treating RA about a year ago.  On my first visit with him he told me about a women who had come to him for treatment just 6 mos. before me and he started treating her and gave her whatever she needed. When I saw him in Dec. he said she was doing great and almost pain free. I'm so glad for her.  I wish though, that he had a little more experience so that perhaps he could offer some words of encouragement, even though I know everyone is different.

Ah well, we shall see what this next visit brings. Until next time….

 

[stile RA]

I saw my AP dr.  My SED rate is continuing to rise and still have the same symptoms as when I began the AP.  The one “good thing” that I hand onto is that I started feeling worse about 3 weeks after beginning AP, which I have contributed to herxing.  In three months I will have been on AP for 1 year.  The dr. is at a loss about how to continue with my treatment.  I shudder to think I might be one that AP can't help.  I did broach the subject about starting LDN therapy.  He checked into t and called me a week later and said he would be willing to prescribe it if that is what I want.  With as much difficulty as other people have had getting the dr to prescribe LDN, I feel pretty lucky. 

As much as my dr is willing to prescribe medications, I still feel he just isn't experienced enough in AP, ie. I am only his second RA patient. 🙂  So, I have decided make the trip to see the AP drs. at the Arthritis Center in Riverside California.  Quite an undertaking since it is about 1300 miles away.  My, hope is that they will be able to pin point what type of antibiotic I need, and do the correct types of labs. All my labs will have been taken and sent down to the Center so all will be ready when I arrive.  Although I'm not sure what to do if they suggest IV treatment.  Possibly have them done by my AP dr up here.  I have to stop the AP three weeks prior to getting the labs done, and I am quite nervous about having an adverse reaction. 

I am trying to do some weight lifting at least 3x a week, but it is difficult to stay consistent when you don't know how you will feel from day to day.  Went for a walk with my family on Easter, and it took me 2 days to recover. I try not to compare myself with how I am now, to what I was before RA. If I dwell on it to much, I feel I might just give up.

Well, my appointment at the Arthritis Center is in about 6 weeks.  I have high hopes that good will come of it, so until then…

[stile RA]

Its been 14 days since my last dose of Minocycline, having stopped in preparation for the labs prior to seeing Dr. F. 

I haven't seen any improvement while being on AP for the last 9 months so I was getting  worried  that this treatment was not going to work for me.  My symptoms were slowly getting worse.  However, after being off of AP for 4 days, I started feeling better, like I had before I started AP.  But on the fifth day, the pain in my joints has become the worse pain I have had to date with this disease.  That leads me to think that even though I haven't been improving, I am at least on the right track.  Perhaps it has been slowing down the disease and the protocol just needs to be tweaked.  As backwards as it sounds, maybe the worsening symptoms means I have let up on the evil little critters and they are getting their second wind? 🙂  I am going to withhold judgement until after seeing the dr in a few weeks.

It was suggested to me that perhaps I should check out getting tested for Lyme, but after doing some research, I just can't match up my symptoms to the Lyme symptoms.  I will, however, keep it in mind and perhaps get tested in the future. 

I am so thankful to all the help I've gotten here.  What a gift this bulletin has been.:D

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