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I want to start out by saying how grateful I am to have found Road Back. And like everyone here, I wish it had been sooner. So I am spreading the AP word and trying to reach out to others as much as possible!!!!!
My story begins with persistent cold/ allergy sxs since January 2010. In March 2010 I visited an ENT for what turned out to be mold allergies remedied by air purifiers in home & store. He also prescribed Xyzal for allergies. Soon after taking this, I began to feel lots of pain in my wrists.
In May 2010 I visited my PCP for a routine check up & complaint of hands & wrists that felt broken. Xrays proved negative. Advil helped but caused stomach issues. He referred me to a Rheumatologist.
My first visit to my Rheum, Dr. M., was July 2010. I’m fortunate in that both he & my PCP have a very patient and caring approach and am hopeful that one or both will be responsive to AP. Both he & my PCP suspected Sjogrens — “Suspected” being the key word to what I would hear over the next two years. No definitive dx as yet, and the treatment plan consisted of encouraging words as Dr. M advised me to not worry. He truly believed there was something in his “Bag of Tricks” that would work. His cheery attitude bode well, and so I hoped he would be able to end or at least improve my ailments. Dr. M. advised 1 tab qd Aleve which did nothing to help. At this time I had general aching w/ some position changes when bending at knees, but mostly in hands when gripping steering wheel. Also felt this during fine manipulation of jewelry design work with hand tools. Overall energy was ok. . . . 7/28/10 LABS: RF = 18, ANA screen = positive, Lyme = neg,
I took an ibuprofen product for a while, but knew that that was not a long term solution. My hands, wrists and arms continued to worsen with numbness, stabbing pain and major stiffness.
One day I walked past a sign that advertised that this Chiropracter could remedy joint pain, so I walked in. This was April 25, 2011. After xrays and 6 months of manipulation, I only saw my sxs worsening. At the six month check point, I let him know that I needed to check back with my Rheumy to see what was happening to me. During this time my pain had progressed to all joints except for my hips. Where I started with hand & arm pain, I ended the six months with a multitude of issue such as trouble getting out of cars, walking up & down stairs and gripping anything smaller than a ping pong ball. My Chiro said that this was a typical response to his tx at this time — and that it was a “good” sign” — OMG 😮 ! I walked out & never turned back.
Back to my rheumy I went on 10/31/11. Dr. M referred me to an allergist (per my request) to see if that was the cause of my ailments, but that turned out to be negative as the tests showed that I had no allergies. Dr. M. started me on PLAQUENIL 200 mg bid which I took for three weeks. I experienced worsened aches, stiffness, decreased appetite, 5 lb wt loss, difficulty chewing. I was back to advil 400 mg 4-5 x/d which still did not help. Next stop PREDNISONE 20 mg with a taper down of 5 mg each week. Dr. M said that he had seen 50% of his pts have their RA sxs end with a round of low dose Pred. Again, I was hopeful. This time, I loved how all pain went away, energy increased and I was temporarily back to normal. Boy did I cram in lots of intense home improvement projects and a lot of dancing at a wedding in November. But, of course, I could not remain on Prednisone. I tried to see how I’d do on a maintenance dose of 2.5 mg.
LABs 10/30/12: RF higher at 41, Sjogren’s AB (SS-A) = 6.3 positive, ANA screen = positive, C-reactive protein high at 1.40 (<.80), Alpha-1Globulins high at 0.4 (0.1 - 0.3), Beta Globulins high at 1.7 (0.8 - 0.4). Interpretation: Decreased albumin & elevated acute phase reactants suggest acute inflammation -- duh!!!
On 1/30/2012, Now taking Tylenol 1 GM QID & Prednisone 2.5 mg BID.
On 2/6/2012, Now taking Advil 200 mg q 4 & Magnesium supp 125 mg q3 & Pred 2.5 mg BID. Trying to avoid another DMARD d/t Plaquenil side fx.3/26/12 I was back to see what was next up in Dr. M’s Bag-of-Tricks, since I was still not doing well at all. It was to be Sulfasalazine 1000 mg BID. Between then & June 1, I required Prednisone and eventually tapered off completely by May 31.
The planets finally aligned in my favor for it is around this time that I discovered RoadBack.org, Dr. Brown & AP therapy! I
Testing . . . 8/1/12 While at work, realized that knee stiffness was gone. Ankles still a little tight. Upper arms feeling less bruised. Before dinner, able to dancersize, bend at knees. Hope this lasts. Feels like 1 step back, 2 steps forward — all good. Minimal herxing today.
8/2/12 Felt joint aches, swollen lt ankle, stiffness all day, general malaise. which I attribute to a glass of beer with dinner night before. Oy! . . . First coffee enema prior to bed time.
8/3/12 Swelling in lt ankle is gone, woke up w/ better energy after a good night sleep. Less stiff, too. 🙂 I think the coffee enema ( a major pain to do first time) was definitely worth it. May try another tonight. I think I’ll need to bring it w/ me on vacay.
Have been on vacay since Aug 4. Did 4 – 5 nights of coffee enema detox in a row. Noticed each day after that ankle swelling was gone. It was difficult keeping this up nightly when on the road so only did it on 3,4,5,6,9,& 12th. Also needed to switch from Motrin to Xtra Strength Tylenol 1000 mg tid until Aug 30. Taking Magnesium Taureate 125 mg q 4. My joints feel so much better when I stay on this Mg schedule, but need to keep it & Probiotic away from my Minocycline doses. It gets confusing remembering when I’m supposed to take something! So here’s what I’ll try to stick to:
7 am: Aloe Vera & Minocycline 50 mg
Breakfast
9 am: xtra strength Tylenol 1000 mg, Vitamins B, C, D (once or twice/ week), Zinc, Selenium
10 am: Mg Taureate 125 mg
2 pm: Mg Taureate, Tylenol
Dinner
6 pm: Mg Taureate, Probiotic, Vit B,
7 pm: Tylenol
9 pm: Minocycline
12 pm: Magnesium Calm 325 mg in 1 tbs hot waterWill change back to Motrin & resume fish oils after 8/30 (week after minor surgery).
I didn’t need to fall back on Prednisone during vacay — yeah!!!! Was able to walk many city blocks with the right shoes. Monday, did some gentle white water rafting — felt pretty good doing it! Walking is not without stiffness, however. It depends on if I remembered to take my tylenol & Mg. I did drink lots of wine, cocktails & lots of french food, so knew I’d pay the price. Coffee enema’s were a must, though I wasn’t able to adhere to a nightly schedule.
Most people do the pulse or M,W,F dosing schedule. I tried it, but herxed too much — which is OK, but I preferred the daily schedule. Less herxing. I know it’s working, though. It’s a slow process, but one that will bring you to remission if not a cure.
Another huge thing is getting enough Magnesium, though that needs to be kept 3 hours away from your Minocyclin or Minocin dose, since, like Ca & Iron, it binds with it, thus rendering it less effective.
Since Tylenol is bad to take long term, I’ll be switching back to Motrin. Just taking it now because it is contraindicated to take Ibuprophen prior to cosmetic surgery which I’ll be having next week.
I just put an alarm in my phone for all my supplements & abx. Just too many to remember! What a difference it’s making. I ran around with lots of energy all day today & a lot less stiffness. Sometimes I forgot about my RA. Also did not wear a “granny” shoe today. Just plain old flip flops all day — which was crazy — haven’t done that in a year!
Have switched am meds after doing poorly this am. Realized I needed to get Mg Taureate in my system first thing and soon after or w/ breakfast Tylenol. Also need to space Mg away from Minocycline, so lots of timing to consider here! Will post new schedule once I know it’s all working.
Today was crazy busy and I actually wore heels all day! It was OK until I walked to the car at the end of the day. Oy vey, my bunyons did hurt!
Ankles are slightly swollen again, so will do a coffee enema tonight.
Note post on Shoulder freezing (Clavicle). I’ve been experiencing heightened tissue sensitization this past week. Although was able to walk many NYC blocks yesterday with mild level of discomfort, I realized I was always thinking of when my next xtra strength tylenol dose was due. I just read in the forum article on QOD recommendation of AB tx that anti-inflammatory meds are needed in order for AB to work best. And I put 2+2 together . . . Because of minor surgery last Wed, I was required to change from NSAID (Relafen BID) to xstylenol 2 weeks prior & 1 week after surgery. I’d just been questioning whether I needed to go back to QOD AB dosing d/t increased tissue sensitization & now believe it’s because I’ve been doing AB w/o the recommended anti-inflammatory meds. Tylenol is only a pain reliever & not an anti-inflammatory. OMG!
I think I will stop the AB therapy until Wednesday, when I can resume Relafen use. I may need to give the Relafen a couple of days to kick in, too. I’ve also not been able to do any coffee enema’s d/t needing to keep my head elevated, so that detox relief has not happened :(.
Was off Mino M,T,W, while my NSAID Relafen 750 mg bid was given time to get back in my system & decrease inflammation. Resumed new Mino schedule yesterday, Thursday, upping it slightly from 50 mg bid qd to 100 mg BID QOD. Wednesday night I did a big no no & drank a beer only to pay for it with extremely stiff joints next am! Today, Friday, is my off Mino day & I feel really good. Upon rising, all joints are much more relaxed, no pain or stiffness — wow & yippee!
Third day of using FIR sauna before bed. Made the mistake of drinking lots of water before and after, so was up all night long 😥
Have started exercising again, since my legs, ankles, knees have improved enough. Need to get back strength & heart health. Doing 20 – 40 minutes on the stationary bike in the am & sauna before bed. Hands are still only able to make a partial fist & nodules in elbows prominent, but seem to be a bit smaller. No shoulder issues, though. Sleeping on heat pads for shoulders, elbows & hands helps.
Saw my Rheumy, Dr. M, today. He patiently listened to all my requests, gave an argument about not seeing the connection between Penecillin/ Erythromycin (since I may be allergic to Pen.) helping to alleviate RA nodules. However, he didn’t see the harm in giving me a 10 day run or Erythromycin. So I’ll begin it tomorrow & hope for the best.
He seemed more intrigued by what I had to share regarding LDN. He kept the literature/ clinical studies and was going to read up on it all, as well as on the internet. I felt comfortable in explaining the rebound effect, the cell growth & immunity enhanced by it when the opiates are produced in greater abundance to make up for what seems a lack of them once the N. binds to the opioid receptors.
I explained this to my husband who shared that he knew the person who was one of the first major investors bringing Revia (brand name for Naltrexone) into the country from Europe. What a small world!
Can’t wait to give this a try!!!!!!!!!!! The user stories are amazing. Waiting to get the thumbs up from Dr. M.
I love my FIR! I did note, as others have that it takes less and less time to begin sweating at 130 degrees. At first it took 20 minutes to begin to sweat. Two night ago, I did a double take since I began sweating only after 3 minutes. I’m now doing the sauna every other night, the same night that I took Minocycline.
I realize I’ve not noted the following: Dr. M. agreed to prescribe Erythromycin 150 mg three times a day x 10 days. I have noted my nodules have shrunk a bit, especially in my inner rt ankle (three nodules) & both elbows. I was so excited that he agreed to the LDN this am, that I forgot to ask for an extension of the Erythromycin. 🙄
So the BIG news is that Dr. M did agree to prescribe LDN, low dose Naltrexone, 4.5 mg nightly. He let me know that my latest labs were all within normal limits, including the ASO strep titer. ESR = 22. I need the report faxed to me, so I can share the rest.
I hope I receive the shipment of LDN tomorrow. I ordered them from Irmat Pharmacy in Manhattan. They do quality control for their LDN and prioriy ship for free. It’s $30 per month & I’ll need to seek reimbursement from my insurance company. Right now, I’m just anxious to get this started & see what happens!!!
I have been herxing quite a bit. Big time yesterday when I forgot to drink my am Espresso w/ 2 tbs sugar. I admit my diet has little changed to help my RA. 😳
OK, so I thought I’d change me Minocycline schedule from 100 mg every other day to M,W, F. And again, by Sunday, the herxing is an issue! Needing to rub Mg/ Lawang oil gel on hands, arms, knees — I’m more tired, too. Maybe I should stop trying this! I’ll be doing the FIR sauna tonight for some relief.
The LDN did not arrive yesterday/ Sat as hoped. Look forward to receiving it in mail tomorrow & seeing what happens 😀
I will not forget, I will not forget!!!! I MUST stick to taking Minocycline every other day!!!! I still felt the herxing most of today. Had an 11/2 massage from my favorite therapist, Oye, it hurt, especially when she tried range of motion exercises on my arms.
I’m excited though! I received my LDN in the mail from Irmat Pharmacy today. I’ll take it at bedtime and see if I feel different tomorrow. Fingers & toes all crossed 🙂 I can’t wait to go to bed, then wake up. . . . . We shall see. 😛
LDN update #1: WOW!!!!! I took my first 4.5 mg dose at around 10 pm. Went to bed at around 11:30. Did not fall truly asleep until 3:30 am. Got up at 7:30 am well rested & much less stiff. Still had to work out the cobwebs, but my limbs were fully cooperating 😀 What was amazing was, I was NOT expecting any changes until the day after, if any. Around 2 hours or midnight I felt something happening to my body. My pulse was stronger, I had to get up to pee & felt less tentative on my bare feet (which were always sensitive without protection of at least rubber soles of my flip flops.) I test drove myself down the stairs, again barefoot and found my balance was good & I was feeling no discomfort or stiffness going down & coming back up (I usually need to hold onto the rail & measure how my knees are taking each step down). No knee issues felt & again the soles of my feet felt OK. Upon return to bed, I kept thinking that difficulty sleeping in the first week is a typical side effect. Well, maybe I’ll crash later in the day (update to come). . I soon began to feel warmer, not needing the heavy comforter over me. I attempted to make fists, my right hand able to close most of way and lt a little better — both improvements in the middle of the night. I was able to push my pillows & comforter around with ease, even with my arms over & s/w behind my head (this was usually a struggle as I was so weak!)
Now, I’m getting stuff done this early am hour. Will take my dog for a walk on the beach, too (usually I can’t do this in the am, since she’s such a big Berner & has a tendency to pull on my aching wrists with her leash).
There is still some stiffness, but my joints seem to want to do more and without any of the aches, soreness. My level of alertness is right up there and such a nice surprise, especially upon waking. I’d only had about 4.5 hours of sleep, but I felt like I had a full 8.
Yippee!!!!
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