Need help answering questions my family is asking that I have no answers for..

[patchoulee]

So as I await my first AP appt in Feb I am dealing with the battle of my family as if the Dr's wern't enough now I have to contend with explaining my choices to my family. They asked me a question I don't know how to answer I am 36 so they asked if I planned on taking AP for the next 10-15-20-25-35 etc years or do I ever ” get to come off of it” I had no answer as I don't myself. The next question this morning was if I have to be worried about yeast all the time from the AP am I not trading one thing for another in that I will be rid of my current “condition” but then would be plagued with yeast and the joint pain etc that goes along with that.  So I guess my questions are is AP a lifetime treatment and how do people handle the yeast thing I know with probiotics but I am told those only help so much.

Thanks for your assistance with these questions

Angela

 

 

[Maz]

Hi Angela

There is an article on the main website that more or less answers what you're facing now written by Dr. Susan Grober, psychologist. She gives some practical solutions for sticking to your guns and how to answer family members and loved ones who are worried by our choice of treatment. Maybe it will help to give you some ideas, but also a bit of comfort to know you're not alone.

 https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/171.html

One thing that may help is to explain that if you chose the normal rheumy drugs for RA, Lupus and Sjogren's, you'd be on them for the rest of your life and, over the years, tend to be highly toxic to the body. AP on the other hand is a proven, safe alternative that doesn't just mask symptoms, but goes after the root cause.

Yeast can be a problem with AP, but if appropriate measures are taken to prevent it from occuring, or to get it under control if it does become a problem, then you should be fine. Experienced AP docs will also often prescribe pulses of anti-fungals and know how to test for and treat systemic candida. You, as a patient, can also do everything you can to avert candida, including taking probiotics daily and adding in herbals that are known to fight candida, such as grapefruit seed extract, as well as eliminating sugars from your diet. Gut health is very important while on AP, so you are wise to question this.

One thing that may interest you to know is that many chronically ill folk already have a candida/fungus problem that wasn't necessarily caused by AP. In fact, they are now finding that patients who take immunosuppressant medication, like the newer biologics, are at greater risk for serious, life-threatening fungal infection. The FDA recently put out such a black box warning on these drugs. However, anything that suppresses the immune system can allow an existing, underlying infection free reign, whether it be bacterial or fungal. The thing is, there are the means to stay on top of such an outcome and medications to control it, if it happens.

With a complication of Lupus, you may be more sensitive to most drugs, anyway, so to go on to the harder rheumy drugs would be quite precarious for you in the long run to manage. Similarly, you would probably find it best to be a low dose, AP pulser. Being on low, pulsed doses would be easier on your gut and help in terms of averting candida problems, just by virtue of being on a lower dose.

Hope this helps to allay some concerns, Angela.

Peace, Maz

[awesomemb]

:)Well, according to Dr. T in Boston I will be on med 10-20 years, even though I may feel great after 5 yrs. However, maybe my dose will be less in the future..I don't know. Regarding the yeast thing. I don't do the Probiotics, I eat a yogurt every 2-3 days. I also only take the 75mg x2 daily. Whenever I try the 100 mg it makes me feel ill and irritates my vag. So I think you start low dose 50mg and then see how your stomach and vag feel. The 100mg at one time even once per day is too much for me. Dr. T also said you can get pregnant and have kids while taking mino. Last, I have had joint damage from Scleroderma but I have less joint pain now since on mino. I would not stress, just start slow. Best regards, MB

[JOJO19551]

My husband was downright mad at me because I would not go on methotrexate because the doctor told him that I should.  I did not even know about the AP therapy when I refused to take a chemo drug before going to the second rheumatolgosit.  The second rheumatologist tole me methotrexate does not work in adults.  I went to a third rheumatologist and she did not believe in AP at all.  I got my minocycline from a dermatologist I see for scleroderma.  I never had a yeast problem; I try to eat yogurt every day which helps.  Kids are on minocycline for years and it is not a big issue.  If i have to take it the rest of my life, I will since it is working.  Best wishes, I am sure your family wants the best for you.  I suggest trying to get your AP therapy started earlier, like a family doctor.  You can print the info on this website and take it to your appointment.  JoAnn

[patchoulee]

Thanks to everyone who took the time to answer it really helpd alot I was 95% convinced I was doing the right thing this was just the extra push I needed to get to 100 %

 

Angela

[Joe M]

JOJO,

Just curious, was the second rheumy referring specifically to scleroderma when saying MTX doesn't work in adults?  For RA, traditional rheumies still consider MTX to be the gold standard of treatment for all patients.  I can not believe there is a rheumy out there who thinks MTX only works in children.  Did you mean minocycline?  I could see a rheumy thinking this way because children use mino for acne…

Thx,
Joe

[rebeccaavazian]

Hi Angela,

I totally understand how you feel and I went through that phase of family being upset that I wasnt listening to my previous rheumy's and not taking the methotrexate and prednisone, I just felt so alone because I knew there had to be another answer. but i satisfied my family and husband and tried those meds for a few months BIG mistake i just felt worse. and thank God I came across AP therapy, I have been on it for about 7 months now and the pain relief i have in my skin and joints are well worth it. i know its still early in the AP treatment for me but just the amount of pain relief is great, Im not 100% better yet or even 50% better yet but it feels great not to feel that tightness in my skin and the hurtful aching in ALL my joints. I still have knee joint pain and wrist but not as much as I used to. and I hope to heal and recover even more little by little. Its definitley worth it.

xoxoxo

Rebecca

[Cheryl F]

[user=310]patchoulee[/user] wrote:

So as I await my first AP appt in Feb I am dealing with the battle of my family as if the Dr's wern't enough now I have to contend with explaining my choices to my family. They asked me a question I don't know how to answer I am 36 so they asked if I planned on taking AP for the next 10-15-20-25-35 etc years or do I ever ” get to come off of it” I had no answer as I don't myself. The next question this morning was if I have to be worried about yeast all the time from the AP am I not trading one thing for another in that I will be rid of my current “condition” but then would be plagued with yeast and the joint pain etc that goes along with that.  So I guess my questions are is AP a lifetime treatment and how do people handle the yeast thing I know with probiotics but I am told those only help so much.

Thanks for your assistance with these questions

Angela

 

 

Angela,

I recommend that you read Chapters 5 & 6 of The New Arthritis Breakthrough.  If I had RA, this would be all I would need to read to know that I wanted to try this treatment.  This patient has now been on AP for approximately 25 years, and is still doing well.

Yes the yeast should be carefully watched and guarded against, but it is by far not a deal breaker!  It is manageable with diet, probiotics and possibly (depending on your current yeast load) an occasional anti-fungal.

Cheryl

[A Friend]

Hi Angela,

Suggestion in answer to your question about answering questions for your family:  Order several of the books, “The New Arthritis Breakthrough” by Henry Scammell — from Amazon.com, you can order used ones reasonably. 

Then, when they want to know about your treatment, you can have them read one of your spare books.  This book really is an easy read, but this simple treatment is very clear, very impressive, and very interesting.  This should answer all their questions. 

When I got my copy and began to read it, I couldn't put it down.  I still remember the “sweet relief” I felt as I realized that everything written by Dr. Brown made perfect sense.  Also, every other chapter is about a patient story.  Helpful and very encouraging. 

Good luck to you.  So glad you are here. 

AF

[JOJO19551]

Joe, The rheumy said methotrexate does not work in adults for scleroderma. 

[Author]

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