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Hi everyone
I have been on tenderjoints and have met some wonderful people who have guided me here.
I am a 54 yo woman (single mom of a teen) and was dx with RA about 6 months ago (atypical RA). I have been on sulfasalazine for 6 months although I do not believe it is doing anything. I also take advil (2- 4 times in a 24 hour period). I also take a humongous amount of vitamins as my ex is a naturopath and I tend to do everything naturally. I take probiotics, anti-inflammatories, vit c, e, d3, calcium, magnesium, and a bunch of metagenics special formulas for joints. I recently started undenatured collagen II, hoping it might help.
Nothing seems to make any difference although I have noted that red meat makes me feel worse.
I have been prescribed and have purchased (although never opened) methytrexate and Daypro. Does anybody have experience with these meds?
There are two AP docs in my state although not near me. I am very interested in AP, have ordered the book and have read the roadback website thoroughly. I have yet to talk to my own rheumo about it. He is pretty open but he also knows how alternative I am and I can picture him rolling his eyes….Even the AP scares me- dont want my skin to turn blue:(
I need help. I need support and encouragement. I do not know how to get the help I need. I need hand-holding. I really welcome any advice, guidance, info that you can give me.
Thank you for listening!!!!
Anybody out there from Colorado???
Devie
Hi Devie
I WAS on Methotrexate for Scleroderma. I can say that I had amazing results from taking this med, BUT the side effects were so bad I had to stop taking it. I am now on something the doc said is similar to methotrexate but not as bad with side effects called Medrol. The Medrol doesnt do as well as Methotrexate but I do not have the aweful side effects as I did with the other stuff.
I am sched to see a Scleroderma specialist in Pittsburgh, but not till June! I am also looking into the AP treatment as well as Stem Cell Transplant. I have heard great success stories of remission with both treatments.
I would have to suggest not to take the methotrexate. I didnt sleep for days on end, I ate like i was in training to be a sumoo wrestler, my moods were so bad that if I would have continued on them I would have been divorced. My blood pressure would go high, and when I would finally sleep I would be sleeping for almost 48 hours straight. I became very compulsive in everything I did.
I wish you the best of luck in finding a treatment that works for you.
Hugssss
Terri
Hi Devie,
I just wanted to share my quick story…I also was on metotrexate at the beginning of my journey. It did help take away some of the pain but was certainly not what I wanted to be on….as toxic and awful as it is! I found AP and it really made sense to me. I got my rheumy to prescribe generics while I waited for an appt with Dr. T and then he put me on name brand. Well, in the same amount of time that it took me to get really really ill, I got really really well. It wasn't overnight, but wow! I know for a fact that AP saved my life. I was definitely headed to a horrible death! You CAN do this and seeing how you have already been an advocate in your health thus far….I know a lot of docs don't go for the alternatives, you will do wonderful. Just continue to do your homework and it'll make sense. There are pages on this site to help you with approaching your doctors as well. The wonderful thing for you is that this is very early in your diagnosis and the earlier the better the prognosis for AP! Good luck and let us know how things go for you. This is certainly a very supportive and encouraging site (great hand holders IMO!)
Oh, and your skin won't turn blue!!! Mine got a little darker….always got comments on my great tan…..but hey, it was much better than the alternative!!!! And although I know it is very individual…..I personally could not tolerate Daypro for some strange reason….don't know.
Nancy
Hi Devie,
Welcome to the Road Back blog. There are so many helpful people who encourage one another here, I find it a great comfort. Just knowing that I am not alone in the fight against the RA monster is great.I was diagnosed 8 months ago. I did not want to take the methotrexate and prednisone that my rheumatologist prescribed so I started looking for alternative options. I stopped eating red meat, gluten, sugar, lectins. (Dr. Loren Cordain at Colorado State University has great research on the topic of gluten and lectins causing leaky gut which leads to RA).
I got onto the metagenics Sustain product to heal my leaky gut, as well as their anti-inflamitories. All of the food changes and vitamin supplements helped to slow the disease process, but I could tell that I was slowly starting to lose the battle. Each week I had a little more stiffness, each week a new joint started to hurt.
So I started my research again, and that is when I read about AP. I had to convince my rheumatologist to let me try it. I started minocycling 100mg, MWF, 7 weeks ago, and I can tell you that I am convinced that I am seeing progress. Slowly but surely I am ridding my body of the actual cause of the RA. My rheumatologist was shocked when last week she got results of my recent blood work and everything was down, RF, Sed rate, C-reactive protein, and Anti-CCP…. ALL down significantly.
I still continue with my diet mentioned above, and my metagenics vitamins including probiotic. I am hopeful that in another month or two I will be pain free. My skin is not blue, and I have not noticed any negative side effects from the minocycline.
I grew up in Colorado! Go Broncos!!
Starla[user=302]Devie[/user] wrote:
There are two AP docs in my state although not near me. I am very interested in AP, have ordered the book and have read the roadback website thoroughly. I have yet to talk to my own rheumo about it. He is pretty open but he also knows how alternative I am and I can picture him rolling his eyes….Even the AP scares me- dont want my skin to turn blue:(
Hi Devie,
Just saw this post (have replied to you on the Vit D thread, too) and just hope to add some additional things to the other great comments above that may allay your fears about minocycline.
Like you, I was an all-natural girl before RA hit. You wouldn't so much as catch me taking an advil for a migraine, if I could cope without. I preferred holistic and natural treatments (still do) to allopathic medicine and even managed to turn around a gall bladder issue with liver flushing to avoid surgery. I thought I had it all in the bag…was healthy, fitter than I'd been since my teens and was ready to enter mid-life in great shape.
Then severe RA hit like a bomb…literally overnight, without warning. I was in a lot of shock and denial about my diagnosis, while also coping with the emotional trauma of losing my mother very suddenly to breast cancer during this time.
Anyway….this is just to let you know that I totally relate to your fears about allopathic drugs, including the relatively benign minocycline. Well, after weighing all the options for treating my RA and coming across this site, I knew there was no other path I was willing to take. Antibiotics it was going to be and Dr Brown's infection theories all made complete sense!
You can really rest assured that of all the options available for treating RA, minocycline is the most benign. It is used with some regularity, long term, to treat teens with acne and the side-effects are minimal and very manageable. Some people do get the blue/grey (from minocycline) or muddy brown (from all the tetracyclines) hyperpigmentation. To avoid this occuring, make sure to limit your sun exposure and to slather on the sun block. The blue hyperpigmentation specifically encountered by 'some' (not all) people on minocycline has been studied. Under microscopic observation this blue pigment is a collection of unassimilated iron particles. So, it is suggested that when you start mino, to be sure to also take a good dose of Vit C (with rosehip to buffer the stomach) on a daily basis with food, as this helps the body to absorb and dispose of the iron more effectively. I take 1000mg per day and may increase the dose during the summer months just to be sure.
People who pulse dose tend to have fewer side-effects than daily dosers, too. These side-effects may include temporary vertigo (usually passes after a few weeks), nausea (take with a full glass of water and maybe a few crackers or apple sauce), headaches (these, too, usually pass). These seem to be the most common side-effects, but there are other possible, but less common ones (e.g. see tinnitus thread).
By comparison to the standard RA DMARDs, these side-effects are minor and generally transient and for the many who use minocycline here, the alternatives are definitely less appealing and considered to be quite toxic and damaging to the immune system and organs. Of course, we would all prefer not to be taking anything for our rheumatoid disease, if that was possible, but thanks to Dr Brown's work, we have hope for remission from our diseases using an antibiotic with a very good safety track record that is targeted to the root cause of our diseases…something not talked about or even considered possible on the standard rheumy drugs.
With your knowledge of natural supplements, I really look forward to learning more from you about any helpful adjuncts to AP that you come across.
All the best in your researches and road back!
Peace, Maz
Maz,
Would you possible be able to tell email me privately to let me know which doc you use? I see that you are in CT as well and are not on the Harvard protocol. I am looking to make a switch and am not sure where to go! Thanks in advance!
Nancy
Hello Devie,
My adult daughter had sudden, very severe onset of RA two years ago. She was prescribed methotrexate and it did bring down the inflammation and make her more comfortable. It also made her hair start to fall out.
At her 3 month check-up she asked for Ap – Minocin- her rheumy was willing though not very informed. My daughter started by taking Minocin every day- it was too much and she got very sick. On her own, she changed to pulsing and within weeks began to improve. It did not take long for her to be symptom free ( not typical, but I think the MTX maybe helped by bringing down the inflammation – and I think it was in her favour that she started AP so soon after diagnosis.)
She continues on AP and rarely has symptoms. when she does it is not nearly as bad as at the outset.
Wishing you all the best!
Thank you so much for these encouraging posts.
I get Metagenics at cost and am currently taking Inflammix, Kaprex, EpaDha, Cal Matrix and Mag Glycinate and a probiotic called Ultra Flora. I was also taking D3 but have read that it might be making things worse so I stopped. I have also cut out red meat and I already was on a low carb (no bread, sugar, potatoes, rice) diet.
I am talking to my rhemy tomorrow and if he wont give me AP, then there are 2 docs in Co that will (they are on the RoadBack list). So – pretty soon I sihould be trying this all out.
I do worry about antibiotic side effects- beside the blue skin, theres the black teeth.
But I also worry about my RA getting worse- right now it is mild and controlled fairly well with advil/tylenol (I hav begun alternating so I dont chance messing up my stomach).
I will keep you all up to date and please tell me anything and everything you know about how I should proceed. I am so thankful for all of you- Devie
What is that preferred holistic and natural treatments to allopathic medicine? and even managed to turn around a gall bladder issue with liver flushing to avoid surgery. if that so, that natural treatments might be great.
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I was put on methotrexate originally, but never Daypro. All the MTX did for me was drop my white blood cell count alarming below normal (which it isn't suppose to do low dose), gave me osteoporosis, two cataracts, and no relief.
But that's just me. MTX does wonders for alot of people and perhaps it helped set me up for my AP – I did have 18 months of it, but really regret it now as these side effects it caused are causing me bad problems now. I will never take it again.
Good luck ~~ Cathy
Well I have been on Minocin for 15 months and Biaxin for 20 months, I still have not turnd blue or darker skined (I am very fairskined) nor do I have black teeth. I think it is in the person makeup of skin etc not everyone changes. I thought it was cute:dude:, but to the people that change it isn't.
Hope you have found an AP doctor and are getting slowly better.
Eva:D
Eva Holloway
Devie,
The antibiotics do not turn the teeth black. They can however cause a buildup that needs to be cleaned away by a hygienist.
Devie,
Hi! Just another note of encouragement for you.
The Road Back is a wonderful place to get information and find people that truly care (my thanks especially to Maz).
After being diagnosed with RA in the fall of 2000, I had no idea what was in store, all the drugs, doctors, etc. I won't kid you, it's a difficult road but you can do it-just stay positive and be your own advocate. I've been through several rheumys that are completely satisfied to prescribe super toxic drugs without batting an eye.
I've been on Enbrel, prednisone, plaquenil, methotrexate, the entire kitchen sink that standard rheumys throw at you. I couldn't tolerate methotrexate-plus my husband, who did his Ph.d thesis on breast cancer, wanted me off of it-he knew it is extremely toxic.
I have been on AP for over a year now and have been doing really well. My sed. rate and RA factors are great. I've had a little set back recently but think I'm coming out of it and hope to find some answers out tomorrow from a dr. visit.Don't worry about turning into a smurf-I haven't seen a bit of blue skin or black teeth, either. I even tried to convince my dermatologist that my tan was from mino and he laughed/scolded me and said, “no way, that's very rare.”
Best wishes to you for dealing with your rheumy and getting on AP. When my rheumy said he wouldn't prescribe it because he said there's not proof that it helps, my husband challenged him and asked if there's proof that it doesn't. He couldn't say there is and wrote the scrip.
Good luck and welcome to your Road Back.
Gayle
[user=1673]joseph131[/user] wrote:
What is that preferred holistic and natural treatments to allopathic medicine? and even managed to turn around a gall bladder issue with liver flushing to avoid surgery. if that so, that natural treatments might be great.
Hi Joseph,
Most people here find that there are some naturopathic methods/supps that support their antibiotic protocol, although this support forum's main focus is to provide a place to share personal experiences of infectious causes for rheumatic diseases and to discuss antibiotic protocols (AP) as a treatment option. You can learn more about AP by going to the top right of this page and clicking on the “Home” button to peruse the main Road Back website.
Thanks for sharing about your liver flushing experience. I, too, saved my gall bladder by liver flushing and agree that it's really important to be liver-conscious, being the body's master detoxifying organ, as longterm medications can certainly compromise liver function.
If you don't mind me asking, what is your diagnosis?
Peace, Maz
PS It can help to generate responses from other posters by adding a signature line that includes your diagnosis and meds, supps taken. You can do this by going to “My Account” above and clicking on the Profile tab to fill in your personal info.
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