New Diagnosis

[Lora]

Hello there,

I've been recently diagnosed with RA.  I've watched my Dad battle the disease for the past 11 years, switching from 1 strong drug to another, while still being in pain.  He now take Enbrel and that seems to help him.  I've “had a feeling” for the last 2 years that I also had the disease.  The symptoms began in my hands almost immediately after my divorce nearly 2 years ago, progressing to both feet as well.

I've been extremely active in fitness and weight lifting, (and still am) and I believe that's mitigated many of my symptoms.  However, the symptoms are becoming progressively worse.

My pain consists of 3 parts… 

1) I feel like I've broken my Dad's heart by having the disease.  He and my Mom are extremely supportive, but I know that he's suffering so much pain just knowing what's to come.  Disappointing and/or hurting them hurts me so much.
2) My physical pain – which I manage each day by being careful about what I put into my body and by weight lifting/exercising daily.  But, it's getting worse.  My primary Dr. has prescribed a steroid blast and now low-dose prednisone until my meeting with the rheumatologist.  I'm not taking the predinisone currently because I just can't stand steroids.  So I manage the pain with OTC aids.
3) I'm self-employed and have no insurance.  This is one of the most daunting aspects, as I know that treatment can and will be incredibly expensive and ongoing.  I've applied for insurance, but can't lie on any insurance application and have been denied coverage several times.  The financial aspect of the disease feels devastating right now.

Has anyone experienced RA without insurance?  Where do you turn?  Who do you ask for help?  I already feel so alone, and the financial/no insurance aspect is terrifying.  Any thoughts or comments on how to deal with new RA is so appreciated too.

Thank you so very much,
Lora

[sierrra]

Hi Lora,

My mom has RA and I worried that I would be like her, but after 3.5 years on minocycline, I'm doing great. In fact, almost two weeks ago I went off it and am taking nothing but supplements. I tried several of the traditional RA meds, which, for me, had limited effectiveness and significant side effects. My rheumatologist wrote the Rx for mino after I suggested it. It's an inexpensive medication, very affordable without insurance.

Try not to worry–lots of us get better! 🙂

Sierra

[Davit]

Try the minocin.

It may be twofold. When your dad see's you get better he may want to do it also. It does work. It is more than just a band aid.

Davit.

[Kim]

Hi Lora, and welcome to the Roadback forum.  I am sorry about your diagnosis and the added pain it is bringing to your family.  Many people have been able to reach remission with this protocol and go on to live productive lives, so there's no reason you can't be one of them. 🙂

There is a program in Indiana to provide low cost insurance to those that aren't eligible in a group plan or are low-income called Healthy Indiana that I recently learned about: http://www.in.gov/fssa/hip/.  You might call them to see if there is anything like that in your state.

There is a ton of information in the “Home” section of the board for you and your doctor.  A few people on this board have found a willing rheumatologist to help with AP, but most of us have given up on our rheumys and are doing AP through our family docs or one of the experienced AP docs, which there aren't that many to go around and may require travel.

We always recommend you read, The New Arthritis Breakthrough, by Henry Scammel to help you understand the rational behind the program.  I learned early on that I would have to become my own health advocate if I was going to convince my doctors to help me, something I wish I'd done years ago.:?  Let us know if we can do anything to help you get started.

Take care…..kim

[linda]

Hi Lora,

Welcome to the RBF. I'm sorry to hear of your diagnosis, but you have a lot going for you to keep you from having to live with this disease as your father has. You're active, you've only had symptoms for 2 yrs and you've found a therapy that will help you stay off the drugs that can have some serious side effects.

You should understand that the sooner AP is started the better it works, and since you've only had symptoms for 2 yrs you should do well.

You exercise regularly which is one of the best things for arthritis.

You've managed to avoid taking steroids, if at all possible, keep it that way. They are wonderful for inflammation but terrible for creating other health problems.

As for feeling like you're hurting your parents, especially your father, you should know that they probably would not want you to do that. It's not your fault that you're sick. Most of us can trace the beginning of our symptoms to a traumatic event, illness or injury; you said your symptoms began after your divorce and that is certainly traumatic. Your father probably feels guilty and thinks he's responsible for your illness; I have 3 grown children who all have had psoriasis – I have psoriatic arthritis- and I do worry that they will develop PsA, but I don't feel that they would be hurting me if did. But I do feel badly that if they ever do get PsA it will be because of my lousy genes.

Parents will always worry about their children no matter how old they are or how well they are doing, so don't let yourself get weighed down with guilt over causing your parents pain. Quite the opposite, you may be responsible for your father being able to stop taking some of the dangerous drugs he's currently taking, and also feel better.

[mschmidt]

Lora,

Welcome to RBF! I'm so sorry to hear about your diagnosis but, so glad you are seeking out alternative options to treat your RA.  Like Kim advised already, the best place to start would be to read “The Arthritis Breakthrough.”  It gives you so much valuable, understandable, logical information about the underlying reasons antibiotic therapy is used to treat conditions like RA.  It's a great way to empower yourself, as well as will answer a lot of questions you may have about it.  I was a very active person before Scleroderma hit me, and I'm happy to say, less than a year after starting antibiotic therapy, I'm running again, exercising 5x/week, and getting my life back.  A year ago, I could barely get out of bed!  The earlier you start the therapy, the better because you don't want to wait for damage to set in before you start to do something about it.  Try to stay away from prednisone if you can because that can potentially start a vicious cycle for you.  Make sure you find a good AP doctor because that will make all the difference in the world.  I travel to California to see my AP doctor, and it's worth every penny.  Since you don't have health insurance, I would at least consider starting out with an IM or GP doctor in your area, and getting on the Minocin sooner than later, should you choose.  You can order it from Canada as long as you have a prescription for it, since it's quite expensive in the states. (for brand name) 

I'm sure it's incredibly difficult for your dad to see you sick but, understand that every parent wants their child to be well.  There's no reason for you to not be able to enjoy an active, happy life, and there's plenty of success stories on this board of individuals who are in remission.  It's not an overnight process but, you will get better, without having to worry about the side effects of a lot of the drugs they will recommend you take.  You may even inspire your dad to do the same, and what better gift to him than to see you get better.

Please reach out whenever you need to–we all are here for you.

Maria

[anno]

Lora, I want to address your 3rd point; I don't have insurance either. I find it is affordable to pay out of pocket, if you can find an open-minded doc who will prescribe minocycline. I would say stay away from rheumatologists; they charge an arm & leg & are notoriously uncooperative in ap. (there may be an exception, if you get a list of ap docs in your area)
 Any doc or even a nurse practitioner can prescribe. Ask around & see who your friends recommend; The trick is finding one who will listen & help you. There are ap docs who will work with a willing doc long-distance, to educate them about the protocol & be like a consultant.
Yes, the new ra drugs cost a fortune; avoid them. They are not harmless.
I take generic mino 3x/week. It costs me ~$35 for 10 weeks! The other expense is taking a good probiotic everyday to keep your gut flora healthy (very important & not mentioned in the book), and then periodic blood tests so you can watch your numbers go down to normal;).
I say to hell with insurance companies. Think of all the money you're saving every month; & they would cut you off when you're sick anyway.
Best of luck to you, hope you find a cooperative doc soon. I cringe to think of you paying a rheum & getting zero (or worse) out of him.

[linda]

Hi again, Lora,

I just remembered a group that helped me with prescription costs, they also help with insurance pymts as well, but not both at the same time. It's a fairly easy process, not a lot of paperwork. With the economy I don't know how much they can still give, but when I was getting remicade infusions they paid for whatever my insurance didn't cover. I had lousy insurance at the time so they pd more than $1000 per infusion. Here is the link

http://www.healthwellfoundation.org/

Also, in Az you can't be denied insurance due to pre-existing conditions, the catch is that there are no restrictions on how much an insurance company can charge for monthly premiums; my monthly premiums were $1000, and my deductibles and out of pocket expenses were 3500/yr. There are a few other states that have this same law about pre-existing conditions, but Idk which ones.

Texas has a state insurance risk pool, many states have this, but Idk about Nevada.

[Kash]

I am so sorry you are facing this right now.  I just got started on all this and I keep telling myself there are going to be better days.  Parents love their children so much they hate to see them hurt.  Just envelop yourself in the love and support they are giving you~that is what helps them too, to be able to give that to you.

[kasdance]

Hi there,

I too used healthwell foundation and they were wonderful! There is also a website called needymeds.org. Now a lot of the sites offer financial assistance to specific disorders or meds so you have to read through the details, but some offer co-pay and financial assistance. also, most states have a month long period where you CANNOT be denied health insurance for a pre-existing condition. In Fla, I believe it is august. Check out your local govt's health page and they will have details. Good luck
~Kristin

[Author]

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