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Jeannie Snyder works in the Day Surgery Unit/PACU at St. Joseph East. She has worked many years as an Operating Room R.N. and in the past, worked 3 years as a Research R.N. She has also worked with Debra McDonald on her Hope Eye Care team for the North West Haiti Christian Mission.
May 13, 2005
1- Why is IC so hard to get a diagnosis?
From my experience, IC is difficult to diagnose because physicians are not well schooled about the disease and often it goes undiagnosed properly. From a woman's point of view, we are treated as if it's all psychotic! The physician, instead of sending you to a Urologist that is knowledgeable in IC, send the patient home with a “band aid” such as medication for depression and sedatives!
The best way to diagnose IC is to do a cystoscopy (scoping of the bladder under anesthesia) with hydro distention and biopsy (filling the bladder to capacity and taking a biopsy to be sent to pathology). When the bladder is distended, you can see the hemorrhagic areas. Some have a “Hunners” Ulcer…and ulcer in the bladder wall. Others may not. During one of my Hydro dilatations, I opted to have a spinal so I could see for myself what the tissue looked like. It was like raw hamburger! I thought, well no wonder I hurt!
2- Explain your personal pain management approach to IC
As time went on and I tried many medications that didn't bring relief, I opted for the Interstim Implant. It took care of most of my symptoms by using a wire with 4 leads inserted into the sacral notch of the hip area and guided down near the sacral nerves. It give off a frequency of impulses to the sacral nerves that govern the bladder and it's functions.It helps in the painful pelvic floor pain, urgency and frequency.You cannot have MRI'S after insertion or go through security scanners at airports. You are given a card to keep with you at all times to hand to the agents explaining the device you have implanted. They just do the pat down procedure. In IC patients it's a great relief until you have a urinary infection or flare up. Also and I have experience, you can develop more ulcers. Dr. Ericson has had great success in lasering the ulcers (again under anesthesia) but with me, new ones formed. That is why she put me on a low does of Cyclospoine A to suppress the immunity.My bladder was no longer “angry' and I have not developed any since. This is the first time I have not had any pain!
I watch my diet and also take Prelief that you can get over the counter to neutralize the acid in your urine if you were to eat something acidic. I cut caffeine and drink nothing but water (soda's make it worse) for 4 years now. I also take Elmiron but it didn't seem to do any good in replacing the lining of the bladder wall…hence the ulcers. I also had to cut out as much stress in my life as I could. I have taken a leave of absence from work to just focus on working on me. I had to find my limitations and I do work in a stressful area. I didn't realize how much until I actually took the time off. I guess you could say I was in denial big time.
Now that I do not have pain, I am on an exercise regimen with a trainer and started back hunt/seat/jumping riding lessons. Before, I was in so much pain in a flare up, my main concern was where was the nearest bathroom, how long would it take me to get there and whether I could make it or not!
3- How is IC different in men than in women?
I know IC does not have boundaries of sex and age. I am not familiar how men are affected since I have only women to call me for advice. I do know children can also have the disease. From what I have heard, they mostly deal with spasms and pelvic floor pain.
4- In Your Opinion, what are the best three treatments (a drug, a procedure, and a self help)
I also, since I have bad knees (no cartilage) take Nutramax Cosamine DS. That is the most pure form on the market. There was a research study done by John's Hopkins Hospital that proved it. The company will send it to you. There is an 800 number to call and you and set up an account with them which is cheaper than buying it off the shelf. You can get a 210 count bottle for $63 dollars (1-800-925-5187). This does help to keep down the inflammation. It also has glucosamine besides chondriton in it. I take it 3 times a day and have for the past 4 years. I keep taking the Elmiron hoping it will help but I haven't seen a change with it. The cyclospoine A has been the only thing that has made a dramatic difference. This drug must be monitored for blood levels and it can be toxic to the kidneys. It also must be avoided with certain other medications because of interactions with those medications. It is also given to transplant patients because it helps suppress the rejection of organs which in IC your body is attacking itself. It is a T-cell suppressant. What we are given is a low dose of Sandimmune so it's less likely to have those side effects. I was fatigued during the first few weeks but now have my stamina and strength back. Also, you cannot take vaccines with live viruses.It comes in a gel capsule and peel packaging.
When I would have the hydrodistentions, Urimax helped with the spasms post-op. It also helps with flare-ups. Urimax also not only relaxes the bladder (which is a muscle) but has antiseptic properties as well. and anesthetic properties as well as an anticholinergic (relaxed the bladder). Some people can use B&O Suppositories for this but I am allergic to Codeine and any medication chemically related to it. I had also tried bladder cocktails such as Rimso-50 (broke out in a rash and had violent spasms as if I were going to deliver my bladder!) and the Heparin cocktail. Neither worked to help put a new lining on the bladder wall .I also tried Neurontin to help with bladder capacity but could not see a difference Another medication. You must be careful when going off the Neurontin due to the possibility of causing a seizure. It has to be tapered down in dosage. I am on is Singulair 10 Mg. once a day to help fight the mast cells which in numbers increases inflammation as in Asthma. I was on Tagamet but had to stop for it interferes with the Sandimmune.Tagamet helps target histamine release which occurs in an infection or inflammation.
I also take 1 Mg. Valium to help relax the bladder since it is a muscle 4 times a day and Elavil 50 Mg. at night for the same reason. They help with the nerve pain pathway and I wanted to try to enlarge my bladder capacity which had gone down to 300 cc's at dilatation. Usually I could only hold 50 cc's and had painful spasms at the end of my stream. I was so sleep deprived I could have played lead role in “Night of the living Dead.” The only other medication I take is Estrace 1 Mg. due to a total hysterectomy with ovaries removed in 1993
5- I want to thank you for your time and help in this project. Is there anything you'd like to add about where we are in IC research?
My Urologist, Dr. Deborah Erickson, came from Pennsylvania. She worked with Dr. Susan Keay and they found the protein that produces the toxin that attacks the bladder wall. There will be a cure when they can find out how to turn this off.
Also from patients I have talked with, people can have more than one autoimmune disease going on as well. One young lady I know has had endometriosis (had to have a hysterectomy), IC and developed Lupus!
My first Urologist tried injecting Botox into the bladder wall nerve pathway which Dr. Chancellor in Pittsburg has tried. It lasted for 6 months the first time (for bladder capacity) and the next time it lasted only 3 months. I am a redhead and it was published that Redheads need 25% more anesthesia. So…who knows why we are so different!
There is hope out there for us with this horrible autoimmune disease. We just have to find ways to treat our symptoms until that day comes. Some people have gone into long term remissions. I do not know of many. We must however maintain hope. The more physicians become aware of this disease, the more likely people will not go untreated and suffer.
About Our Expert:
Jeannie Snyder, R.N.
St. Joseph East Hospital
“What I am suggesting is that by extension, that is the job of the company-to sell a product and make a profit, not to better people's lives.”
But so what? How is this even slightly different from the company that sells you your car, or toys for your children, or the food you eat? How is the company's desire for profits different from your desire to get paid for what you do? You presumably wouldn't work as a doctor if you were forbidden from ever getting paid for it – does that mean that no one can trust you?
The proper role of the government is to regulate, not micro-manage. If the companies are well-regulated, then their products will be reasonably safe and we'll get information on efficacy, side-effects, etc., and then it's up to patients and their doctors to decide.
Drug company reps are paid to give the best possible case for their company's product line, similar to a lawyer or real estate agent or car salesperson all giving their best pitch. It's your job to do your own homework, ask tough questions and sort it out. How can you be so trusting in a panel of experts and yet unwilling to do your own job as a doctor making your own decisions?
How can a panel of scientists that get paid a fixed amount regardless of the quality of their decisions be expected to do as good a job as companies that are risking their own money to decide whether to develop a drug? Yes, the company hopes to make a profit. But they know that their profits will be much, much higher if they can find a drug that is clearly better than the others, and they know that they can lose a lot of money if they develop a drug that offers nothing at all that's new or better.
Thus, drug companies only decide to continue researching a drug if it has potential, while some panel of experts would decide based on whims, snap judgments, the fear of approving a drug that might hurt people (which is a reasonable fear but must be balanced against the desire to approve drugs that help people, and the panel would get little or no credit for that), plus there would be the classic decisions in exchange for bribes or in favor of relatives and cronies. The expert panel, like other central planning systems, leads to corruption and incompetence and at best, indifference. Important decisions shouldn't be left to those that don't care about them.
We have plenty of experience with both systems – the panel of expert/central planning approach and the regulated market approach. Why are you suggesting that we ignore decades of experience? Your justification needs to be more than 'people's lives are at stake' – that's true in many, many areas. Shouldn't a government panel of experts be the only ones allowed to do any sort of construction? After all, people's lives could be at stake from shoddy construction or poor design. Shouldn't the government provide our food, and certainly build our cars? By your reasoning, shouldn't the government really control everything, just in case?
DEAR DR. GOTT: My 13-year-old grandson has been plagued with urticaria for the past two years. It appears on his face and all over his body. His mother has taken him to several specialists, but they cannot seem to find a cause or cure. He manages it by taking Zyrtec and Singulair.
Do you have any suggestions or helpful information? This condition bothers him greatly and interferes with his daily life.
DEAR READER: Urticaria is more commonly known as hives and presents with itchy welts that appear and disappear. They are believed to be an autoimmune disorder and may be linked to allergic reactions, thyroid disease, lupus and other health problems. Lesions appear in batches, often on the face, arms and legs, but can also present inside the throat, on the genitalia and on the lips. They can last from a half-hour to a day and a half.
While it may not be possible to pinpoint the cause of your grandson’s problem, any information provided to his physician will be of assistance. For example, are the outbreaks caused by food, food additives such as MSG, herbal supplements, vitamins, medication, stress or physical activity? Are the hives worsened by heat or cold?
Over-the-counter antihistamines might help relieve the itch. Zyrtec and Singulair are both prescribed to reduce the severity of the symptoms he experiences.
Because his physicians have not been able to determine the cause of his hives, it is extremely difficult, if not impossible, to avoid the trigger or triggers that will likely continue until someone determines the cause. However, he can wear light, loose-fitting clothing, avoid scratching or otherwise irritating the affected areas during outbreaks, use a soothing lotion, cool affected areas with a cold washcloth or shower, minimize his activity and use the prescribed medication.
Has he been tested for thyroid disease, hepatitis, lupus or other medical conditions? If he hasn’t undergone allergy testing, this might also be a viable next step. Has any physician attempted to switch the Zyrtec to Allegra, Clarinex, Claritin or other low- or nonsedating antihistamines? Benadryl and others can make him drowsy and could present their own set of problems during the day, but they still allow another option. There are a number of other medications that might be used in conjunction with his current medications for better control. In addition to his primary-care physician, an allergist or dermatologist might see him.
To provide related information, I am sending you copies of my Health Reports “Allergies” and “Thyroid Disorders.” Other readers who would like copies should send a self-addressed stamped No. 10 envelope and a $2 U.S. check or money order per report to P.O. Box 167, Wickliffe, OH 44092.