Rheumatoid Arthritis

[Guest guest]

HI :

Sorry to hear the Remicade didn't work for her. Maybe she should try one of the other biologics. She may not be allergic to all biologics - just the Remicade. I was on Enbrel for 3 months, didn't do much for me, switched to Humira and am having much better luck.

As far as prednisone goes, everyone reacts differently. I have actually been on differing doses for almost 3 years now. I have had very little visible side-effects other than a little bit of weight gain. My cholesterol is higher they think as a result. As far as osteoporosis goes, I do Fosamax, take calcium and do a fair amount of weight bearing exercise. If she can tolerate it, prednisone is often the magic bullet until she can find something that will work longer term for her.

As far as food goes, I often found that there was no one to one correlation. For me, things take about a week to cause a problem - usually that's stress or hormones. Also, I found that I was in such pain and so tired that the last thing I wanted to do was to be even more strict with myself and try and control my diet, too. I think it's a psychological thing - you feel so deprived just of your life that you want to have some control and freedom in the areas you can.

It's only been a year since she was diagnosed - that's not a lot of time to get used to the idea as many people on this board will attest to. What she needs is kindness and understanding and the room to flail around a bit to find out what works for her. This is a difficult disease with lifetime consequences. It's not going to be figured out very quickly. You have to both be patient although it's very hard when you are in that much pain.

Good luck .

gloria

[Guest guest]

,

I have had RA for 7 years and seen many docs and many drugs..prednisone,

anti-inflammatories, plaquenil, methotrextrate, gold shots, Enbrel, and

Kineret. Most all worked for a while but all also have side effects. After

reading about prednisone, I was determined to get off it somehow. Plaquenil

caused bad headaches and effected my eyes. Methotrexate made liver enzymes

shoot up and caused bleeding. Enbrel was great for a while and then I kept

getting sinus infections. Kineret did nothing for me.

So, I DO know what you are dealing with. I heard about antibiotic

therapy and read a book and decided to do it. My body was so sensitive that

the drugs all caused problems. I had a tough 6 months starting antibiotics,

but it was well worth it. As the antibiotics fought the mycoplasma, there

was war going on in my body but having the right mind set that I was

fighting the " bug " and I would win helped a lot. I gave up wheat, milk,

sugar, and spicy or fried food. I do not eat bread. It sounds terrible but

it is SO nice not to hurt and have joint pain. I took Minocin, acidopholus,

vitamin C, fish oil, and chicken cartilage. An alternative doc was helping

me. I can't tell you I am back

to normal, but I am doing very well. Sleep good and work fulltime still. I

have no fatigue. I need hand surgery and probably foot surgery for crooked

toes and fingers but I definitely have back control of my life. I have never

had any joint surgery yet. The alternative route was what worked for me!

Books I read are The New Arthritis Breakthrough by Henry Scamell and

The Infection Connection. Today I am still taking vitamin C(5,000 mg.),

fish oil(3 tsp. a day), and chicken cartilage (2 capsules a day). My

co-workers can't believe what a comeback I have made cause they watched me

at my worse when I could hardly walk I had so much joint pain. I thank God

for discovering antibiotic therapy and found out about it from a discussion

board on internet for arthritis just like all these fine folks talking to

you. There is a website if you are interested at www.rheumatic.org with

articles and folks you can e-mail that will tell you their story.

God bless you for your love and support for your wife. RA almost

cost me my marriage(it is very difficult for the spouse), but with God's

help my marriage has been restored, my husband loves me today, and I am

doing well. I pray you and your wife will endure until she feels better.

Kay

----- Original Message -----

From: <paulp_73@...>

<Rheumatoid Arthritis >

Sent: Thursday, February 12, 2004 10:16 PM

Subject: Rheumatoid Arthritis

>

> hi all..well for those of you that know me, I just wanted to give

> everyone update. As you know, my wife has had RA for the past 12

> months. Shes 29 and started taking remicade in March. The Remicade

> was helping a lot with a combination with Methotrexate and Folic

> Acid. She received her last infusion in Oct03 and at that time, she

> went in a week early because she was hurting and they also increased

> the dossage from 3mg/k to 5mg/k. 2 weeks after the infusion, she

> was still hurting and it looks like her body is building antibodies

> against the Remicade. Also, 3-4 months ago, she started getting

> rashes the size of a quarter on her back, behind the ears and now on

> the side of her face and chest. We have found that was being

> caused my the Remicade and theres only like 8 cases of this reported

> and when its reported, they report it in dermatology reports not

> rheumtology reports.

>

> Now its back to the drawing boards because shes on 17mg methotrexate,

> folic acid, and steriods - prendisone (10mg per day)..she just

> started plaqunil and that takes like 3 months before it's going to

> work. She does massages bi monthly to help and is going to try

> acupuncture next week. She has full blown RA and wanted to see if

> anyone else that has it has found anything that works.

>

> If anyone has any ideas or thoughts, please let me know..i dont want

> her to take the 10mg of prendisone beacuse of the long term

> effects. Not to sure about the plaqunil, but heard some good and

> bad. Also, any ideas on other treatments would help. I've

> heard a lot about the food book, but cant get my wife to belive in

> it because she never hurts after eating any particular food. It's

> sad to say, but they TNF agents are the best thing on the market and

> without her able to take them, i'm scared that life might be really

> hard in the future months/years.

>

> Thanks

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