Nervous to start protocol

[cla0713]

I believe I came down with Scleroderma in Aug 08 and by Sept a RA doc put me on trad.  meds.  Yes, I have read a lot of the info and have “THE” books.  I found a doc in a small town about 1 1/2 hours from here and he has helped some people here, although he hates doing it, since he is a surgeon not an RA doc.  I am going to do the Minocin starting tomorrow and he will do the IV's in his office.  I just don't know if I can afford it if ins. doesn't help.  If I can't afford IV's then do you think I'm waisting my time?

 

Thank you for your response

Connie

[Eva Holloway]

Connie,

I wish my AP doctor had put me on IV but she decided against it. I am on Minocin and Biaxin and I think any treatment with Minocin to start with is better than the trad. meds the rheumys use. I have been there and done this. Go for it, it will only help you to get well again.:D..

I am doing lots better than I did 15 months ago when I started the AP program

Eva:D

Eva Holloway

[Maz]

[user=1373]cla0713[/user] wrote:

I am going to do the Minocin starting tomorrow and he will do the IV's in his office.  I just don't know if I can afford it if ins. doesn't help.  If I can't afford IV's then do you think I'm waisting my time?

Connie, this is GREAT that you found a doc so close who is willing to do both IVs and orals for you. 😀 If your insurance won't cover IVs all is not lost….there are a number of sclero patients who have done well on orals alone. In fact, in the upcoming eBulletin, which should be sent out to subscribers this week, we have the story of an AP old-timer who did very well on orals only. It took a number of years, but he has been in sustained remission for the past 4 years.

See if you can get insurance to cover IVs. If not, you can just start oral minocycline and see how you go. You can always add IVs later, if necessary.

Please let us know how you get on!

Peace, Maz

[Lynne G.SD]

Hi Connie;
       I was doing quite nicely on oral antibiotics alone when my doctor suggested I try the I.V s.They did not do anything more than the mino did so I stopped and just take a small dose of oral Clindamycin six months on then six months off.I know for sure that it is mino that works for me as I often get overworked and exausted.Then I start to stiffen up again.I just have to take mino for 2 consecutive days instead of every other day,get more than my usual 5 hours of sleep and am just fine by the third day.
                             Lynne

[cla0713]

Thank you so much.  It does help knowing there are people out there who know what we're up against.  I will let you know and I'll be sending Randy a note later.

In Feb. my RA doc  thought I was already im remis.  I am no on full dose of methatrexate and 1 5mg pred. a day.  I hope this enhances my chances with AP.  I don't think I'm as bad as most, yet anyway.

Later and thanks,

Connie

 

[Lynne G.SD]

Connie;
    Is that 1.5 mg Pred or 15mg pred.The first dose is fine but the second one can cause serious problems if taken long term.You have to realise that you need a functioning immune system to fight the disease.A suppressed one sure won't help.It is your immune system that kills off the micoplasma that the antibiotics only weaked.

[cla0713]

It's 1.5  At least my reg. RA doc was very diligent on keeping me on as low as possible doses and luckily it was enough.  For now anyway.  After I find out if I can afford the IV I'll post.  You all are so informative.

Thank you

Connie

[A Friend]

[user=1373]cla0713[/user] wrote:

It's 1.5  At least my reg. RA doc was very diligent on keeping me on as low as possible doses and luckily it was enough.  For now anyway.  After I find out if I can afford the IV I'll post.  You all are so informative.

Thank you

Connie

Hi Connie,

Usually the thing that gets the health claim paid is the diagnosis.  If any of the rheumatic illnesses are diagnosed, and a Mycoplasma panel of tests (or for other organism) is done and found to be positive, then an appropriate treatment for this infection is IVs — and these are an approved treatment by the FDA and should be covered. 

If you have copies of your labs, be sure to take them with you.  If you've not had mycoplasma tests done, ask the doctor you are to see about this.   If you do not have copies of your past lab tests, you need to call or write and get copies of these and take them with you.  Patients have a right to a copy of all their tests. 

When I first saw Dr. S in Iowa, I had IVs twice daily for five days.  The health insurance claim was submitted with a diagnosis of RA but did not show the results of the mycoplasma test, and my insurance company denied the claim — FDA does not/did not cover this as a treatment for RA.  Later, I asked a rep with the insurance company why this was not covered because the IVs were for an infection.  She checked the information and saw I did have positive mycoplasma tests.  After this, the insurance company sent me a refund.  After this incident, all of the IVs were covered after that. 

I believe you need to discuss this with your physician first, rather than the insurance company.  The doctors are usually aware of how to submit these forms. 

Good luck,

AF

[cla0713]

OK I'll do that.

Thanks.

Connie

[cla0713]

I guess if I had a brain I'd eat it.

I'm on 5mg ofr pred.   Jeez

Does anyone know how I should go off my meth and pred???

 

Connie

[Eva Holloway]

Connie,

just take your time. Dr. K. made me cut down slowly each week on all three medications I was taking. One took me three months, but she told me she rather I take it easy than get into a flare. It did work. I know we all have some brain fog on most days, they get better with time :roll-laugh::roll-laugh::roll-laugh::roll-laugh::roll-laugh:.

Eva 😀

Eva Holloway

[cla0713]

Sounds good.  I'll figure out a 3 month schedule for mine.  My husband just got diagnosed with cance last week.  It's a real party over here.

Thanks.

[Eva Holloway]

Connie,

I am so sorry to hear that your husband has cancer. Hope they can help him to get well soon.:(

Eva:(

Eva Holloway

[cla0713]

Thank you.

What did you go to.  I'm starting Minocin everyother day 100mg.  He wants to do IV's also if I can get insurance to pay.  Can't do $400+ everywekk for 2 months.  I don't see how I can  make it on this minocin reg. alone.  Guess I'll see about ins. and just start the min. and call the doc again.

Conne

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