March 13, 2012 at 5:02 pm #306495
History: Started with a severe shoulder bursitis flare in October of 2011; a few weeks later, a flaring with just as much pain but unknown cause came up in my wrist, lasted 2 days or so, subsided, then the opposite hand, then back to a different area in the other hand, etc…sometimes there was no flaring for a few days so I just didn’t “get” what was happening until it became a steady cyclical thing in December of 2011, and made an appointment to see my GP in January 2012.
Since there was no hugely visible swellings or redness and tenderness was moving about into different, and not the same areas, the GP ordered several blood tests to try to narrow the ballfield. Everything came back fine and within normal ranges except off the scale CCP reading. GP referred me on to a Rheumatologist that I saw beginning of February 2012.
With symptoms becoming clearer as RA, but only the blood tests run by the GP; diagnosis was RA and recommendation was for Plaq. and Predisone, along with a NSAID to control flares. I accepted only the NSAIDS until I could further research the other meds, and the AB protocol as I had read about and viewed on this site. Was sent for another blood test for RF and CRP, along with MRIs to determine if any joint damage starting at this time – glad to say: negative on the joint damage, no notable RF factor and CRP in normal range; so just the CCP off the scale.
Returned to Rheumy better educated on all fronts – but understanding that there is NO set direction for this disorder; however, from all the information and personal threads told her of my choice to start her recommendations and only wanted to add that since Mino appeared in her offered brochure, I wanted that included if she could as I felt firmly that it was the direction for me to go if I ever hoped to gain remission from this. She agreed and off we go on my journey!
So, current notes:
NSAIDS worked enough to keep strong flares “at bay” for a time, but other areas like hips and knees came onboard with swelling and weakness; added the Prednisone at 10 mg. until I could decide on Mino or Plaq, first has helped further with flares – so that now they are what I would describe as “dull and liveable”, however, some joints are retaining fluid longer from the start of the day and fill-up easily toward the end of the day. Only just started the Plaq. in addition to the other 2 drugs – so no feedback on that at this time; and will not be starting the Mino for at least a month so I can gauge side-effects from the Plaq (if any) per doctor’s instructions.
DawnFMay 8, 2012 at 6:56 pm #362246
Update: Weaning off the Predisone, down to 5 mg and dropping to 2.5 in a week; not happy with the future impact on overall health so willing to suffer more to prevent lasting damages. Have switched to Fish Oil from Cod Liver Oil, added Tumeric and Ginger powders to diet on a daily basis. Also, after a review of comments on this board, purchased a portable FIR Sauna – and use that several times through the week; maybe only a comfort physically – but hoping it helps in detox as well (does feel great!) Rheumy prescribed MTX and I have started that now in advance of the Mino since my inflamation is still so bad that I don’t think I can gain much, if any, benefit from the Mino until that is leveled off, or at hopefully decreased somewhat.
I am very leary of remaining on either the Plaq or MTX beyond 6 months time – so planning on starting the Mino within the next week or two after I am past the timeframe of possible MTX side effects. I don’t want to confuse side effects, so I do agree with the Rheumy on keeping each medication distanced by at least 30 days of each other. However, I am finding that the leanings seem to be going towards the heavy drugs as “best”; and no support for the AP protocol, so given that: both my husband and myself are educating ourselves on the protocol so that we may be able to implement it and maintain it ourselves since medical coverage could become extinct due to finances and employment. Ah….such is this ragged system of things!
DawnFMay 15, 2012 at 7:34 pm #362247
Just a brief update, after much review and reading the New Arthritis Breakthrough book in it’s entirety; dropped the MTX and proceeded forward with the Mino at an every-other-day dosage to start with after re-reviewing my original post and Maz’s response. I am continuing to drop the prednisone slowly to prevent any issues; but it appears my inflamation hasn’t tried to “soar” any more than was already typical for me; so it appears the drop is gradual enough from the highest of 10 mg/day down to 5 mg, alternating 4 mg now. I am looking forward to hopefully remaining at this level – or improving now that the Mino has been started.
DawnFJuly 5, 2012 at 8:08 pm #362248
Okay, another update. Not completely off the Prednisone as I find it does keep the swelling down while the AB is having effect. Which, thankfully, appears to be happening now! Very happy, but cautious as I am still taking more medications than I want to, and will only be able to start weaning off them as the AB seems to have sufficient impact. But I can almost make a fist daily now – where before I could only arch my fingers on both hands and not close them. Progressive swelling and inflamation has stopped and is seeming to subside now. Morning stiffness releases it’s grip on me much quicker than in the past few months. I did take it upon myself to up the dosage on M/F to 200 mg, and kept W at 100 mg on the minocycline. Didn’t feel any flaring from the change so I am hoping that was a good decision (sigh – wish I had a literate MD to help). Not going to move the dosage further until another month or more passes.
So, in summarizing the meds I want to be rid of: Predisone in it’s entirety within the next 4 weeks or so. Mobic at 15 mg., at least dropped to 7.5 within the next 2 months. Plaquenil from 200 mg. daily to 100 mg. daily within the next 6 months. I am thinking in that order, but will try to get more of a feel as each step comes into play.
Still appreciating this site to no end; and just had another friend with Fibromyalgia ask what was working for me; so referred her to the site to peruse and hopefully benefit as well! Simply can’t tell any individual how to approach their illness as we are each so unique…however, I feel very confident in the site’s participants helpful manner and useful links and experiences in assisting any to be able to honestly appraise their personal situation to make informed decisions.
DawnFDecember 28, 2012 at 1:40 am #362249
Okay, had no idea this much time had gone by – but that’s how busy (all) are nowadays. I am off the Prednisone (yeah!) and also the Plaquenil for now (I may have to restart that, hoping not though) and on just the 15 mg. Mobic and 200 mg. Minocycline M-W-F. I feel like the Pillsbury Dough-Boy however, as swelling is present from my toes up to my knees abundantly and from my shoulders through my arms and wrists and hands. I thought that I would kick a shoe gently back into my closet today and found that “Wow!” there is definitely tight/painful swelling in there! Agh, so sad as I have really been hoping that the Minocycline would be taking hold and having a positive impact by now. Kinda feels like the weather change happened just in time to make the absence of the Pred/Plaq. in my routine standout. Sigh – anyway, trying now to decide if I can place the Plaquenil back in for a benefit of sorts to finish out the winter and then wean back off that in Spring…hummm….
DawnFJuly 21, 2013 at 5:03 am #362250
Roller coaster ride with Medical coverage as I quit my job which was bringing so much stress that I could feel it in my inflamation and energy the same day as my job was dishing it out. That nixed insurance for me, however, my husband finally got back to work again and it was a waiting game until that coverage could start and also to see if they would allow my pre-existing condition. They did! So….I went in for a GP review with a doctor I chose from the network and I was hoping would be progressive enough in thinking to allow for AP therapy. He was and also sent me to a Rheumatalogist in the network that my friend was using for her Sjogrens and she felt was forward-thinking and open to different therapies. I can’t believe it: double-hitter! The Rheumatologist was fine with AP as I briefly outlined it and so I’ve not had to change much from my M-W-F rountine, however, since I felt I had possibly hit a block I asked about adding another antibiotic to the rountine. She prescribed Doxy, and wanted me to leave off the Mino and take it exclusively….however, after all I’ve read and learned from others here, I have been pulsing it first to prevent a shock-flare response. I am glad to report it seems to be working and areas that seemed stubborn with swelling look like they are beginning to respond. So, carefully and cautiously, I now have a Rheumatalogist to help oversee my treatment which is feeling like I’m making some gains again leading away from the miserable situation I found myself in back in February of 2012. Certainly cannot do alot of things I use to, but am not feeling pain restricting me from cooking, cleaning, working another job which requires me to do walking and sometimes a bit of standing longer than I could do before. Gently and slowly I am hoping this is my recovery method and that progress is what I will keep experiencing.
Currently at: 100 mg. Mino on M, 200 mg. Doxy Tues & Thurs, 100 mg. Mino on Fri. Mobic of 15 mg. daily at lunch hour w/food, Prednisone if a bad circumstance causes a flare (no laughing, but I was headbutted by a goat w/horns enough times to cause a significant flare a short while back!). That’s it medicinally! The rest is diet such a FRESH fruits, vegetables, staying away from gluten and all the “white” stuff (flour, rice, sugar, lard, milk, etc.) and sticking with core-supplements of Vit.C, D, Omega 3s, B complex, boron/calcium, tumeric, ginger, cinnamon. I have a nitey-nite drink of local honey, apple-cidar vinegar and hot water and use my FIR sauna when weather is not hotter than it is (smile). 😆
DawnFApril 4, 2014 at 12:36 am #362251
See, it does work! Not 100%, but I would say 60-70% of myself is back and my feeling is I am on a definite upswing so I anticipate even more. Added Sulfurzyme into my regimen as I was having to go back to Prednisone on a pulse-dose everytime there was a severe stress (3 deaths in the family in the last half of 2013!) and just didn’t want it to be part of my ongoing life. It has help immensely and then I added massage for the hands and feet to break down the areas that were trying to lock up from inflammation being present for too long. I must say that although painful, so worth it as a couple of my fingers threatened to become “trigger” and were starting to lock off and on – and all of them are freed up now! Not a gentle, petting massage, but an intelligent, deep massage where the crystalizations are sought out and grinded into to break down and free the area for better circulation.
So, I’m not done in my journey as I would consider it; but I would say I found what appears to be/and now has clear evidence indicating to be: my road back! All without biologics, MTX, Plaquenil or heavy steriod use. I couldn’t be more pleased with the benefits this site and absolutely ALL those frequenting it have proved to be. From “silly” to “intense” postings – every one of them has helped me along….and the MOST challenging part to this point has been sticking-it-out as the backslides, doubt and flares can really tax the emotional take on this.
I will post again in the coming months to compare further gains – but couldn’t miss this opportunity.
DawnFMarch 3, 2015 at 5:21 am #362252
Gotta say: AP is definitely making a difference in my activity level and attitude. No depressing days now at all, frustration days for the world we live in, but no depression due to the “prison of illness” that the RA had me in. Oh yeah! 😀
So, in trying to evaluate my recovery with only taking minocycline and no other medications now, I would venture to say about 80-85% of my old self. No morning stiffness, just stiffness from cold weather or lack of movement for a time. I can crouch, jump, run (not fast), wave my arms and shake hands, and many other things that I had figured would be by the wayside when battling this for the first year and half. Still challenged with opening water bottles – but that’s a hoot as many I dearly love and see regularly have problems with those and do not have RA!
Very excited to be down to just the mino now; always keep some prednisone on hand in small mgs. doses just in case a flare occurs. But haven’t used it for a crutch in a long time…nor did I have the horrible weight gain or moon face from the use I did make of it. By always being conscious of it as a BIG negative, I think kept me from ever leaning on it for maintenance, only assistance in emergency moments. (Can you say huge stress or goat-attack! 😆 )
Diet has now become a more primary focus of mine. Eliminating evils (sugar, white flour, lards, etc…) which still show up due to my husband’s unrestricted diet; while finding my go-to staples that not only make food taste great, but support the environment that my body appears to thrive in: garlic, onions, avocados, celery, radishes, carrots, sweet potatoes (not yams), mushrooms, glutenfree brown rice pastas, sourdough (homemade and maintained), water kefir, horse radish, spinach, kale, arugula, small amounts of meat, olives – oh! olives (not the green though for ? reason)….mangos, strawberries, blackberries, blueberries, pineapple, etc.
Learning to cook fresh, prep fresh, eat organic mostly. All this while working fulltime and learning a new job when I had to replace my sorely stressful one.
Kudos to all on this board along with every post GREAT or SMALL as they lent me the support at the times I’d come begging for it: whether that was Prednisone-weaning, flaring, herxing, blood testing and understanding such, personal experiences of permanent or temporary damage by RA, and even the middle-of-the-night emotional outpourings on paper (postings) which let me know how very not alone in the fear factor I was!
Looking forward to more recovery, but it has slowed down enough that I’m not sure when the next progressive post might be.
Hugs and warm encouragement to stand-fast and fight the fine fight to any reading this and these other related types of postings for tracking purposes, for the same reason I read through each and every one of them (eventually)!!!
The forum ‘Personal History and Progress Threads’ is closed to new topics and replies.