A: The Aspreva CellCept study was a good example of how things work in the market of rare diseases. Company will not try to find new drugs unless there is at least 1 billion dollars a year in sales. For our diseases, it is very tough to do that. Other parts of the world may help because trials are more likely to take place where there is universal healthcare.
Q: Is there a registry?
A: The Definitions study sponsored by the IPPF and the Centric/IPPF HMP are the seedlings of a methodical record of disease symptoms, treatment protocols, cross-medicine experiments and legitimate clinical trials. It all starts here.
Q: Are there organizations that have been successful in setting up a registry on their own?
A: Yes, XP Foundation has its own registry.
A: Estimates have been made but there is no good grasp on the actually number.
Q: If an individual already has an autoimmune disease, is that person more susceptible of getting another autoimmune disease
A: There is an increased risk for people with one autoimmune disease to get another.
Q: How long will it take to get off steroids?
A: Very individual. Some people take months, some years. Goal is to reach 5 mg eod. Immunsuppressives can help.
Q: Are there people with high titers who don’ t have disease?
A: Not all antibodies are created equal. Antibodies need to target the right part of the cell. There are antibodies to parts of a cell that are non-pathogenic.
Q: Is there a maximum amount of prednisone one should take with CellCept?
A: No fixed amount.
Q: Are my chances greater to develop cancer from the immunosuppressive drugs?
A: Theoretically, there can be an increased risk of viral lymphoma. Data with Imuran comes from risks with patients with rheumatoid arthritis (RA), but patients with RA already have an increased risk. There probably is a smaller riskwith Cellcept, but it depends on how long on the drug and what the dose is. There is a small risk with Cytoxan as well, but higher than on Imuran.
Q: What about Rituxan?
A: Experts are excited about Rituxan because of the way it works. There is a lower chance of cancer. It doesn’t kill stem cells so the effects are not permanent.
Q: As steroids decrease will type 2 diabetes symptoms disappear?
A: There is prednisone-induced diabetes. Exercise will help the body use insulin properly. Anything higher than 126 (glucose) fasting, and 200 randomly is considered diabetes. Sometimes as you reduce steroids, sugar might go down. Insulin can be temporary. Take it if you need it. Januvia is a good drug if there is steroid-induced diabetes.
Q: How long does it take for prednisone to affect the organs?
A: It will affect the body almost immediately. The largest bone loss numbers will occur in the first 6 months.
Q: How often should a person have blood work?
A: If someone is on CellCept or Imuran a person should have monthly blood work. If you are on Cytoxan it should be weekly. Adequate monitoring is extremely important.
Q: I have been taking Imuran and prednisone for 8 years. Should I switch or change drugs
A: There is no guarantee if you switch drugs you will get off of prednisone. Low doses of steroids on alternative days is the goal. Not everyone can get off of drugs completely. Imuran and CellCept seem to be equal in effectiveness. One way to try and get off steroids would be to raise the dose of immunosuppressive.
Q: MMP diagnosis Does surgery cause vaginal scarring to get worse
A: Scarring cannot be reversed in MMP, only prevented. Surgery can make it worse in the area of MMP.
Q: In OCP, is frequent urination connected with drugs
A: Cytoxan if used most often for OCP. But Cytoxan can cause bladder problems. There are drugs that can lessen the toxicity in the blood if someone is on IV Cytoxan.
Q: Can a cold cause a flare
A: It can, but it doesn’t necessary mean you need to increase steroids use. You should wait a few days to see if it is only a temporary flare due to the cold.
Q: Are there any studies showing IVIG usefulness
A: IVIg causes a rapid reduction of antibodies. It is well described in the literature.
Q: Is Medic Alert helpful
A: Yes, if anyone is on steroids they should wear some form of medical identification.
Q: What would be your recommendation for general nutrition foods and/or supplements
A: One should watch high calorie intact. Lean protein is important. Basic multi-vitamins recommended. If someone isn’t eating, then something like Ensure would be good. Ask doctor to check Vitamin D levels.
Q: What about alternatives acupuncture, milk thistle, for drug side effects Can they help a patient
A: There is a basis for the exploration of alternative therapies. But, there is not enough data to give a definite opinion. Acupuncture is worth trying because it can help with stress. Red yeast extract may affect liver. Make sure you tell the doctor exactly what you might be taking so the physician can assess side effects.
Q: Should I stay out of the sun on immunsuppressives
A: Yes. Stay out of the sun if you are immunosuppressed.
Q: Should people with pemphigus not drink caffeine
A: There is an increased risk for bone loss for people on systemic steroids, caffeine may affect this too.
Q: Is it safe to take an over the counter sleep aid with prednisone
A: You should always talk to your doctor first. Occasional over the counter sleep aids are fine. Doctors can prescribe something to help you sleep.
Q: What are good topical treatments for PV in the gums
A: It is difficult for medicine to be retained in this area. Best things to try are the trays made from vinyl. Gel is probably the best medicine to use on the trays. It has shown to be helpful in MMP, but disappointing in PV. The disease really needs to be treated systemically.
Q: What about Swish & Spit
A: You should not swallow the drug because it will add a lot more steroids to your system, but it can be used on occasion.
Q: Environmental triggers vaccines correlated to disease
A: No hard evidence linking vaccines. Theoretically it could be possible, but there is no proof.
Q: Does the flu or shingles vaccine trigger the disease
A: It worthwhile getting vaccines because the benefits outweigh the risks. Do not take live vaccines.
Q: Do the diseases cause sleep apnea
A: The diseases themselves would not necessary interfere with sleep, but gaining weight from medications could have an effect and facilitate sleep apnea.
Q: Is there any connection between Menieres disease and pemphigoid
A: There does not seem to be any connection.
Q: Can pemphigus or pemphigoid cause plaque
A: No, but sore gums can cause plaque built up if the teeth are not taken care of. The key to long term success is keeping teeth clean.
Q: When gums recede can you replace missing gums
A: Yes, there are drugs that help, but you cannot get back all of it.
Q: Is there a relationship between tooth and gum disease and conditions such as cardiovascular disease
A: There is research going on to looking at a possible relationship.
Q: What do you do when missing a tooth
A: Not all teeth need to be replaced, absent esthetic problems.
Q: What can we, the patients, give back to the physicians or to the Foundation
A: Provide Information by taking part in the Health Management Program. Form a support group if there isn’t one. Spread the word to health care professions so they will be able to recognize the symptoms. Be willing to participate when doctors bring students into the room. Send us your ideas, do a local fundraiser, donate, and share your story.
Q: Have there been any clinical trials for MMP or OCP
A: At present, there are no trials but the need is there. It is harder to do trials because of the small number of people with the disease.
Q: In a double blind study, how do you make sure that a person would not get sick if they were getting the placebo
A: Most of the patients in pemphigus studies are usually on steroids, so most will not be in jeopardy because they are already on some medication.
Q: What are the benefits of being part of a trial
A: You would give back to community. Establish relationships with other patients. Contributors would get the drugs, laboratory testing, and follow-ups at no cost.
Q: How long does a clinical trial take
A: Some trials are now 3-5 months, but they really need to be longer, the cost can be many of hundreds of thousands of dollars.
The Journal of the European Academy of Dermatology and Venereology (JEADV) printed, in its Letters to the Editor section, a case study from the Department of Dermatology, Valencia University General Hospital, in Spain. Pemphigus Vulgaris Associated with Cocaine Snorting. It was reported that a patient was admitted to the hospital with severe erosions on his body and diagnosed with pemphigus vulgaris. The patient was given 90 mg of prednisone and sent home. His disease did not subside so they added 1 gram of CellCept. The patient’s disease did not get better.
After a toxicology report was positive for cocaine, the patient admitted to being addicted to the drug. After management of his addiction began, the patient’s pemphigus rapidly improved. The patient had 2 severe relapses while on 60 mg of prednisone and 1 g daily of CellCept. The PV relapses coincided with his continued use of cocaine.
Because of the sequence of events, the authors concluded that cocaine consumption might have been a factor in the development of disease process. They suggested that physicians should be aware of the possibility of the use of recreational drugs among certain patients, and that because of a lack of coordinated efforts between the disease state and the addiction, these patients are more likely to relapse back into their drug habits and cause the worsening of their disease.