Introduction and a question | Arthritis Information

Hi Everyone!

I'm Elle, just joined the forum ten minutes ago. I'm 26 years old and was diagnosed with JRA at age 10.

I've recently gotten a lot worse and none of the medications seem to be doing anything except make me puke (at work).

Has anyone heard of (or done) alternative treatments?? All I can seem to find online is hypnosis for dealing with pain and recommendations for people to read 'The Secret'.....

Thanks in advance!!!

Welcome Elle - sorry you had to find us. There are tons of archived topics in here under the search function, and a section for alternatives. Best of luck ~~ Cathy (It really is sad that 19 people viewed your post and weren't even courtesy enough to welcome you - I call them our sick voyeurs).

justsaynoemore2008-05-12 03:57:57 Welcome Elle,

I commmend your search for alternative treatments, and thank you for your honesty of what your med's do to you. You will sadley find on the fourm that some are only interested in what kind of meds they can take and wont look for healthy more natural way to help them. Maybe look into Bio feedback it will help with the pain, but not the swelling and limited movement in your joints. I do think their are healthy alternatives out there. Also try anything that might work for you, and think outside the box(that has become my token saying here).

I wish you the best in your search for wellness.

Jonathan

Jonathan2008-05-12 04:17:52

Hi Elle - I can't help out on the alternative treatment path, but wanted to welcome you to the group. Sorry to hear that your current meds aren't helping any longer - has your doctor made any recommendations for next step?

Hope today is a better day for you.

Hi Elle....welcome! Glad you found the boards. As you can see, although many of us don't use the alternative treatments, we are happy to steer you in that direction if that's what you are interested in. One quick correction though. Someone mentioned Pop to you, but it's actually Pip! She knows a ton about antibiotic protocol and will be happy to answer your Q's about it.

Hope you find sucsessful treatment!

Thanks Linda, typing not that great tonight, been cleaning out the freezer of all things, and the old fingers are a bit stiff!! Perhaps it might help if I watched what I was doing, but not a touch typist. Jeanne, me neither! I totally have to watch what my fingers are doing, and even then I have a multitude of typos. I wouldn't have said anything except I was thinking that if Elle wanted to pm Pip, she'd have not been able to. I really wasn't trying to be the typo police :)Welcome Elle, good luck, you will enjoy this board, we all try to advise and be as friendly as possible. My fave pain reliever when nothing else helps is my electric blanket after a hot shower, it helps my pain levels a lot. Good luck from Janie. Hi Elle!! glad you found us.. wish you didn't need to

Ican't help with the alternative treatments but perhaps some of us can help with advice on how to deal w/ your current treatments without puking???

What is your protocol??

babs102008-05-12 05:30:24Welcome, Elle!

Not typing well today, but wanted to say hi. Hope you have a superfantastic and extra-comfortable day!Hi Elle!

Typo Police - man, would I be fined - and it took me 3 trys to get 'be' just now. LOL

Alternative? I'm into AP (A LOT) but that is actually approved by the American College of Rheumatology. We're just use Minocin (antibiotics) to control our RA.

Have you thought about probiotics? Also, depending on what is going on with you, you are probably really low on calcium, magnesium and potassium. I think we all need to keep track of our mineral panels because to low on somethings spells out more 'diseases' - like low on pot and mag and we most likely have Restless Leg Syndrome.

Diet is a huge way to lessen flares. A lot of us report flares from wheat, gluten, dairy, sugar, nightshades, corn...you name it. The cheap way to check which foods are bothering you is to remove one thing during a flare - wait until the flare stops - then add it in again and see if you flare within a week. If you do...don't eat that again! LOL

Also, many herbs and vitamins and supplements help with this disease. Personally, I don't buy MLM things but some people think they help. (Jonathon, not dissing you - just my opinion) I just think its better to go naturally and as unprocesses as possible.

Also - I'm really interested in knowing what you think brought you out of remission. Perchance, was it related to estrogen? Have you recently had a child? Anything that disrupted your cycle? That's really common. Or an infection?

Also - for the puking - please don't let them start you on PPI's without trying this first. Seriously, I thought this was 'silly' but it worked. I was weaning from a PPI when JSNM suggested that I try Aloe Vera Juice. It really worked. Whenever I was 'pukey' I'd take a big swig of the bottle I picked up at Whole Foods. I weaned!

Pip who has still not updated her signiture

Hi Elle...welcome!Hi everyone!

Thanks for the warm welcome :)

I'll search the antibiotic protocol to find out what that is (It's something I've actually never heard of).

Before I stopped my medications I was on prednisone (80 mg a day) and it helped but made me huge. Then we tried enbrel and then methotrexate - both made me throw up like no tomorrow. I was going to try and stick through them but my husband and I are starting to think about children so i don't want to try anything else that's going to prevent me from having children for years.....
Welcome, and good luck with finding something that works for you, and with starting a family! :)Welcome!! Hi Elle - Welcome to the forum! Hi Elle -- I don't post much on this forum but I have used alternative therapy very successfully and wanted to share that. Like Pip I use the Antibiotic Protocol (AP), and my rheumatologist did agree to prescribe it because it is an approved DMARD, although not very popular with most rheumatologists.

I also have used prolotherapy on my shoulders and hands, which has helped me a great deal. Check out www.caringmedical.com to learn a little about prolotherapy.

And I am also doing accupuncture now and I think it is helping. My accupunturist is being trained on using a laser for laser accupuncture, which is supposed to be very helpful for RA -- as the standard accupuncture needles cannot get deep into joints and the laser can do so painlessly -- it's too early to tell how helpful that will be.

So keep looking for what suits you -- hope you find some rellief quickly.

Bonnie Lou

welcome elle, best wishes! i hope things work out soon. you have definitely come to the right place. there is a wealth of knowledge on this board. hope to here from you soon, and you find something that will give you some relief. wonderwomanHi BonnyLou - can you tell me more about Prolotherapy? I didn't understand the website? Is it a form of PT?

Elle - you can't be on the tetracyclines trying to or already being pregnant. I think most MD's use alternate antibiotics like Zith but don't quote me on that. An AP doc would know. If you're thinking of getting pregnant soon, there's always the 'pregnancy induced remission' to look forward to.

Hugs,

Pip

'pregnancy induced remission'
well i cant get pregnant [QUOTE=ellewin]Hi Everyone!

I'm Elle, just joined the forum ten minutes ago. I'm 26 years old and was diagnosed with JRA at age 10.

I've recently gotten a lot worse and none of the medications seem to be doing anything except make me puke (at work).

Has anyone heard of (or done) alternative treatments?? All I can seem to find online is hypnosis for dealing with pain and recommendations for people to read 'The Secret'.....

Thanks in advance!!!
[/QUOTE]

Fish oil has worked wonders for me. I take enough fish oil to get 3 grams of omega-3's every day. Depending on the brand and capsule size, that's 5 to 10 capsules of fish oil per day. For the first few years of my RA, all I used was fish oil, with medrol, NSAIDs and analgesics for the occasional flare. In the past year we've added plaquenil to the mix, because I've been having an increase in pain/inflammation. Since the addition of the plaquenil, my pain is once again gone. Well, except for my left hip - but I'm not sure it's an RA thing. I'm going to talk to the rheumatologist about it next week.

Hi El,

Nice to meet you. I hope you find the right combo of meds or whatever makes you feel better.

take care

Hi Elle,

I just joined this board tonight, too! Sorry to hear you are having such trouble. Since I am a newbie, I have no advice. But I CAN send you well wishes and a prayer for relief.

Amy

Let me make this a little clearer. This is what the American College of Rheumatology says about the use of minocin (AP therapy) for rheumatoid arthritis:

**MINOCYCLINE (Minocin)**

+ Description	+ Side Effects
+ Uses	+ Points to remember
+ How it works	+ Drug interactions
+ Dosing	+ For More Information
+ Time to effect

Description

Minocycline (Minocin) is a member of the tetracycline group of antibiotics. Although rheumatoid arthritis is not an infection, minocycline may improve the signs and symptoms of this disease. There is evidence minocycline may slow the progression of joint damage in arthritis and prevent disability like other drugs in the class known as DMARDs (disease-modifying antirheumatic drugs).

Uses

Minocycline is prescribed for patients with symptoms of mild rheumatoid arthritis, sometimes in combination with other medications to treat patients with persistent symptoms of this form of arthritis.

How it works

Minocycline is an antibiotic, which means it helps neutralize or kill bacteria that cause infections. When used to treat rheumatoid arthritis, however, minocycline works through a different mechanism to control inflammation. Minocycline decreases the production of substances causing inflammation, such as prostaglandins and leukotrienes, while increasing production of interleukin-10, a substance that reduces inflammation.

Dosing

Minocycline usually is given as a 100 milligram (mg) capsule twice a day. It may be taken with food, although it should not be taken with other medications such as antacids or iron tablets.

Time to effect

It may take 2 to 3 months before any improvement in arthritis symptoms is experienced and up to a year before maximum benefits are realized.

Side Effects

The most common side effects from this medicine are gastrointestinal symptoms, dizziness and skin rash. Patients who take this medication for a long time may notice changes in their skin color, but this usually resolves after stopping the medication.

Some women who take minocycline develop vaginal yeast infections. While this can occur with other antibiotics, it seems more prevalent with minocycline and other tetracyclines. It is thought minocycline kills bacteria normally present in the body which protect against yeast infections.

Minocycline may increase sensitivity to sunlight, resulting in more frequent sunburns or the development of rashes following sun exposure. It is recommended patients apply sunscreen (SPF 15 or greater) before outdoor activities or avoid prolonged exposure to the sun while taking minocycline.

More rarely, minocycline can affect the kidneys or liver. Doctors may recommend periodic blood tests for long-term users to check liver and kidney function. In equally rare cases, minocycline can induce lupus, but this condition usually improves after stopping the medication.

Points to remember

Before taking minocycline, tell your doctor if you have ever had any unusual or allergic reaction to any other tetracycline antibiotic.

Minocyline use during pregnancy can slow the growth of teeth or bones in infants after birth as well as cause discoloration of the newborn’s teeth when taken during the last half of pregnancy. Because minocycline may decrease the effectiveness of some birth control pills, talk with your doctor about other contraception options while taking minocycline.

Minocycline is passed into breast milk, so mothers should avoid breast-feeding to prevent delayed development of teeth and bones in their infants. Minocycline can increase a nursing infant’s risk of fungal infections or dizziness in the newborn. Because minocycline may cause discoloration of teeth and problems with bone growth in young children, it is recommended that those younger than 8 years old not take this medication. This is not a problem in older children and adults.

Drug interactions

Be sure to tell your doctor about all of the medications you are taking, including over-the-counter drugs and natural remedies. Possible interactions with minocycline may occur when taking warfarin (Coumadin), antacids containing calcium, aluminum or magnesium (such as Tums, Rolaids, Maalox, or Mylanta), iron tablets and oral contraceptives (birth control pills).

http://www.rheumatology.org/public/factsheets/minocycline.asp