Stopped AP

• By Christine-2
• Posted October 30, 2009 at 1:36 pm
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Hi Waimea;
Do you have an AP literate rheumetologist?If not go to Roadback and they will find you one.The average rheumy knows nothing about AP/Herxheimer's reaction etc.etc.
Since there are no really good meds for this disease you might as well continue with AP.I am 100% normal again,Gleevec seems the second best thing but after a year only 18 people out of 23 finished the trial and only had slight improvement.

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• By waimea
• Posted October 30, 2009 at 3:05 pm
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Thanks for your input, Christine-2. I am putting myself back on now because I believe that this is my best route to healing this SD. Bev.

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• By xpattycake
• Posted October 30, 2009 at 3:36 pm
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Im confused what did he mean by the end results would best be stopped now?

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• By Kirk25
• Posted October 30, 2009 at 6:32 pm
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Yes, please clarify if you can. Thanks

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• By Terri9967
• Posted October 30, 2009 at 6:46 pm
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Makes no sense to me why they would take you off the AP when it works and put you on such a toxic drug like methotrexate. I was on that for a year and the side effects can be really nasty.

I would want a more detailed explaination as to why stop something that is working and put you on something like metho????

Hugssss
Terri

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• By CherylF
• Posted October 30, 2009 at 8:04 pm
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Bev,

My main comment would be that YOU need to make this decision. This is obviously a doctor who does not support AP therapy. If AP is the therapy YOU choose, and this doctor doesn't support it, then maybe you need to find a doctor who supports your choices. Methotrexate is also an "off lable" and technically "unproven" therapy, just like AP. If you choose to follow his suggestions that's good too, just make sure it is what YOU want.

Also, from all I know about AP therapy, there is not any credibility to the "better to stop now" comment. I think he is just trying to strong arm you into doing it his way, and, again, if that is what you choose, then great, you became well informed and made your choice.

Good luck!

Cheryl

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• By M_McF_M
• Posted October 31, 2009 at 1:37 pm
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If I remember correctly, you've only been on ap three weeks, haven't you? And you've already regained some of the use of your left arm? Three weeks??? IS he listening to you???

I hadn't even regained my energy yet at three weeks, and my hands were just starting to respond, and my face was starting to get soft. Three weeks??? And he wants to stop something that is helping you?

The end results are you are getting better! Why would he want you to stop now?

If you want to find an ap doctor who will support you, go to http://www.roadback.org, and they'll help you find one in your area. If he won't support you, find someone who will.

Methotrexate? google that for 'effectiveness scleroderma' and 'side effects' see what clinical studies that have already been completed have found out about Methotrexate. Educate yourself. Find someone who'll support your decision.

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• By M_McF_M
• Posted October 31, 2009 at 5:29 pm
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After thinking about your post for a few hours, there is just one other thing...'and he also does clinical studies.' I have friends who have run clinical trials, they are very bright and highly trained medical professionals, but it does not necessarily follow that they are offering the best expertise in the field. Researchers know about their own specialized area of interest, but not necessarily what others are doing. You still have to evaluate what medications are being offered you, and what your other options are.

What does that mean?? If a doctor is engaged in research, he is interested in you as a patient that will be willing to forgo all other treatments to take a risk on the treatment he is studying. That is what a clinical trial is; a controlled situation in which the patient does only what the doctor dictates, because any other medications, supplements or herbs would taint the purity of their study results -- upon which their funding (drug donations from the pharmaceutical companies, funds for their labs, and their personal income), position (job with the hospital and/or teaching hospital) and reputation are dependent. Patients in a controlled study are not necessarily told how other patients are responding to the treatment - for good or bad - because the emotional state of the patient can impact the outcome. Are you comfortable with that?

The medication or treatment that is being studied may or may not be helpful to the patient -- that is why it is being studied. Sometimes clinical trials are suspended because the medication is actually making the patient sicker -- which is an observable outcome of the trial -- or they end up finding out that there is no benefit to the patient, another observable outcome of the clinical trial. Of course, there are times when clinical trials have beneficial outcomes, for example, the clinical trial of an anti-emetic for chemotherapy patients; nausea is controlled.

Experience doing 'clinical trials' does not have value to the patient, unless there is a reasonable expectation that there are no other viable options for improvement, and it is worth the chance they are taking to try something new.

This is why treatment at a teaching hospital or a clinical trial should be thoughtfully evaluated by the patient. When you are trying to find a viable treatment, it is easy to be dazzled by the medical research environment, the hope offered by the potential for success, and the professional education of the person offering treatment. But, YOU are still the person in control of what you accept and decline, and we should all try to find out as much as we can about what we are being told, and have the guts to say no to something we aren't willing to do, before we make a commitment to any treatment.

Another way to look at it is YOU are the one interviewing your doctor for the opportunity to treat you. How many scleroderma patients have they seen? What kinds of drugs do they prescribe? Do your own research on their effectiveness, and side effects -- don't rely on the doctor to tell you everything. Your doctor probably hasn't taken one of the drugs they are going to prescribe for you, and has no personal knowledge of what it is like to take the drug. How are their patients doing? Are there any examples of successful treatment from specific drugs in their practice? Are their patients willing to talk to you about their treatment? Can you meet them face-to-face and talk about side effects, and improvement? (If, as a tv news assignment editor, if I ever asked a doctor for a patient to interview, there was not one instance when a doctor did not call me back with a patient willing to be interviewed -- so any denial of this request is obstructing you.) Can you as a patient find a better alternative for treatment?

We are too often passive when it comes to our medical care, we're looking for an expert to treat us. Be active, challenge your doctor, question what is offered, only hire a doctor who you have confidence has your best interests in mind. Are you willing to give up all other options for treatment to participate in a narrow study of one medication? If you didn't like what the medication was doing to you, would you be too intimidated to drop out of the study, would you feel obligated to the doctor? Do you think that you as a patient are more important than the doctor's study, funding or reputation? How much of your health are you willing to risk? How much of what the doctor is recommending is based upon his personal and professional considerations? Are you willing to interview a different doctor, and ask about other possible treatments?

The bottom line is that just because someone has a title at a research facility or hospital doesn't mean they are going to be providing the best treatment. It doesn't even mean they are prescribing drugs that work to treat what you have. They may or may not be on top of the latest information, or be willing to give you information they may disagree with, but is effective. You are the one who is in charge, you need to know as much as you can and make the best decision for you.

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• By waimea
• Posted November 1, 2009 at 7:42 am
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Thank you for all your comments and input on my behalf. I think I was (am) still afraid of SD and now am back on track to help myself with the information you have given me, we know our body best. It's being afraid and alone that probably could make me more vulnerable except for this support group.

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• By Love_to_laugh
• Posted November 2, 2009 at 9:04 pm
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Hello, as much as we look to our doctors for answers and help, we also have to be our own advocates and do what we feel is right for ourselves. I stronly agree with M_McF_M... "You are the one who is in charge, you need to know as much as you can and make the best decision for you." Keep the faith and I wish you all the best, Sue

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• By Cubby1
• Posted November 2, 2009 at 9:10 pm
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WAIMEE: I, personally, have been on AP for 4 years and am doing well.!! (I also do Photopheresis). I don't like the fact that you were getting better and he took you off?????

I would definitely go the roadback and find an AP literate rheumatologist. The methotrexate did not work for me.

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• By Nico2
• Posted November 3, 2009 at 10:19 am
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Methotrexate is a drug used for chemotherapy, for cancer patients, they use it on SD in a smaller dose, but it still kills cells, my hair fell out, and I gained 15 lbs.
I think these Dr. are reaching and looking for something that helps, but they should remember the oath they took to be a Dr.( FIRST DO NO HARM,) thats why they have lab rats to experiment on!
Nico2

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• By M_McF_M
• Posted November 4, 2009 at 10:18 am
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I talked to my best friend last night. She used to run lung cancer trials. She said to ask your doctor if he gets 'seed' money for every person he brings into the clinical trial he is running. The question is a legitimate one for patients to ask. Where does the 'seed' money come from? Ususally the pharmceutical company who is sponsoring the trial. Go in with your eyes wide open.

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• By KOwens
• Posted November 4, 2009 at 5:23 pm
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Such great advice you are all sharing. My doc actually asked if YOU were all being paid to give me this "alternative" information!! How funny! I have decided to stay on AP/LDN despite my internist and Rhemy's insistance that I stop. The morphia that I've had on my leg for 20 years is disappearing! I think that is a miracle after only 60+ days of therapy. We need to listen to our bodies and our hearts.... Some doctors I've seen have placed fear in my head, but in my body and heart I know I've made the right decisions for me. That's the best I can do... I pray that we can all keep our courage, faith and continue with the open sharing. Blessings, Kim

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• By vonni
• Posted November 4, 2009 at 7:41 pm
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I have an appt. with an AP doctor in a weekfor my diffuse SD. It is so encouraging to hear you are doing well with AP--there is a lot of resistance in the medical community regarding the use of AP. I have yet to understand why, as I continue to read hundreds of testimonials such as yours who have had positive results.

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