Q&A: Questions from the forums, email, phone calls, and Facebook postings

Answers from the IPPF Peer Health Coaches

Q: I’ve heard of some success with tacrolimus ointment for BPthoughts?

A: Some doctors report success with tacrolimus ointment for BP, that it can help limit the use of more potent topicals such as clobetasol, especially in atrophy-prone areas of skin (vulva/anal). However, also note its black box warning and side effect of malignancy risk. Albeit a controversial and by no means universally accepted risk, the FDA labeling remains. Discuss uses and side effects of this as compared to other options fully with your doctor.

Q: Which of the insurance companies cover newer biologic therapies and what can I do if mine insurance is resisting?

A: From what we know currently, although insurance formularies (list of covered drugs) change frequently, for IVIg; United Healthcare considers it experimental. If you are up for the fight, they will approve it on appeal. If prescribed, a Letter of Medical Necessity can be submitted for a special request, often granted. Blue Shield of CA considers it experimental as well. Some Medicare Part D plans will not cover at home. But Medicare will certainly cover it in the hospital. You can always call the IPPF and we can get you a referral to an insurance advocate if you are having trouble.
For Rituximab, most insurance companies will want justification, but most will cover in the end. Often what it takes is evidence in the form of scientific supportarticles on research and treatmentsoon data from the IPPF P-P Registry will likely provide evidence regarding its treatment benefit.

Q: I’m searching for a new calcium supplement and would appreciate your feedback. Due to having osteopenia, I am anxious to find a supplement that will be beneficial. Researching it online proved to be overwhelming. It seems like anyone and everyone are trying to sell thebestsupplement known to mankind. I want one that isn’t overly expensive, absorbable and possibly proven to promote bone strength and regrowth. All my docs recommended Fosamax, Actonel, Boniva and Citracal. I’d prefer not to go the Fosamax route.

A1: I had been told to take Calcium by my doctor because I have some Osteoporosis, and I found the best has been by Vitamin World. They make their own vitamins. I get 500 mg, absorbable Calcium with Vit. D. 1000mg, and have to take each one with my three meals a day. At the IPPF Annual Meeting we were told that our bodies can only absorb 500mgs. at a time, which is why it is taken with the three meals, and my doctors say I am in great health. I also take omega-3 at two of those meals, since it’s important, too.

A2: I like the Country Life brand of liquid calcium/magnesium/vitamin D. It is more easily absorbed since it is in a liquid form. I was also able to purchase the mineral Strontium by Boiron while I was in France. We (IPPF members in the Forums and Discussion Group) had a discussion about this mineral and its improvement of bone density several months ago. The strontium should not be taken within 2 hours of taking calcium. There are many places that sell Boiron supplements, but I have not seen that their Strontium products are available in the US, but maybe online? I, too, would avoid the bisphosphonates (Fosamax, etc.) due to rare but potential side effects such as atrial fibrillation (which my mom developed while on Actonel), and the potential jaw bone problems. Since you do not yet have osteoporosis, I’d give the non-prescriptive route a try.

Keep in mind that every patient reacts to medications and other solutions differently. Most of this advice is from PERSONAL experience and may not be appropriate for you. Discuss all changes you make to your treatment plan with your doctor.

Q: What is the Health Management Program (HMP)?:

A: The IPPF’s Health Management Program is a voluntary program with no downside or cost. All the data collected is confidential. HMPs help patients achieve better health and quality of life by increasing knowledge and awareness about pemphigus and pemphigoid issues, practices, and new developments. HMP Coaches (Marc, Yvette, Susan and Sharon) will remind you to discuss certain issues with the doctor such as bone density, lab tests, and eye exams.

Most useful for those new to the complexity of these diseases, the program puts an experienced P/P patient in your “back pocket”, giving advice, perspective and questions to ask your doctor. Enrollment is simple. You will be contacted by a Peer Health Coach who can answer your questions and provide you with the Enrollment and Consent Form. After we receive your consent form, your Peer Health Coach will call or e-mail you to set up an appointment to complete our initial survey which should take approximately 30 minutes.For more information visit http://www.pemphigus.org/wordpress/get-support/hmp.

For those who are in good control and have a good understanding of P/P, you can give back to the IPPF and to those newly-diagnosed by participating in the Disease Registry. Also confidential, the data collected there illuminates areas of success (and lack) in treatment strategies and in fruitful areas of lab research. We need 1,000 patients to make statistically significant plans and there are just over 350 histories enrolled. Do make a difference for others even if you are feeling better at www.pemphigus.org/registry. This data will give researchers a better chance to find treatments with less negative impacts for generations to come, and ultimately help find a cure.

Publicado em Issue 62 - Fall 2010
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The P/P Registry has been approved by the Western Institutional Review Board (WIRB) and is actively enrolling participants.

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