Can You Help?
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I've been on Fosamax for a few years. Recently, I had a bone density scan and my doctor though my bones were worse, so she referred me to a rheumatologist. He explained how to interpret the T scores and said that I have osteopenia in my spine, left hip and most of my right hip, but one spot (the most vulnerable spot) in my right hip has osteoporosis.
My doctor wants me to go on Forteo which is a daily injection. Part of it is covered by my insurance, but I would pay $75/month out-of-pocket. The option is to go on Reclast, which is a once-a-year IV. Forteo can only be used for two years. Reclast can cause damage to a person's jawbone if they have dental surgery around the time of the IV.
Using a wheelchair lessens my chances of falling and breaking something unless I fall during a transfer or the chair malfunctions. My question is: Are there any known adverse effects for polio survivors who have taken either of these meds? Alice, Ohio
Response: Posted 12-08
First of all, Fosamax can cause the jaw problems also, and some oral surgeons will not do extractions on people who have been on ANY of the osteoporosis drugs.
Secondly, there has not been any research on any of the osteoporosis medicines to show if they help osteopenia or osteoporosis that is due to lack of weight bearing (as in the limbs of a person who has had polio), so we think it might help but have no proof that any of the drugs help when the bone is not stressed by full weight bearing.
Yes, the risk of falling is less when you use a wheelchair, but then you also are doing virtually no weight bearing on the hips. As far as I know, there are no specific problems for polio survivors in using any of these meds – just the same side effects for anyone else taking these meds. Be sure to get the recommended intake of calcium and vitamin D. Marny Eulberg, MD, Denver, Colorado
ITEM CYH803
Is there any research showing benefits of Vitamin C related to post-polio syndrome? I have read almost all of Dr. Fred Klenner's papers about the cases he treated in North Carolina, as well as research and treatments performed by W.J. McCormick, J.F. Edward, Linus Pauling and Irwin Stone. However, most of this research was done during the initial attack of the poliovirus. I believe there is significant evidence that Vitamin C helped those patients at that time. But is there any research or proof that those patients treated with Vitamin C didn't experience post-polio syndrome later in life? Also, is there any evidence that Vitamin C, given in large doses as Dr. Klenner administered to his patients, will help a post-polio patient? Rachel, Alabama ryan_rachel@bellsouth.net
ITEM CYH802
Does anyone have a solution for the problem of a raised toilet seat that continually loosens due to use and to the weight of the user?
Please respond to webmaster@post-polio.org with any advice. Posted 5-06
ITEM CYH801
I am looking for information on interactions between chemotherapy neurotoxins (such as taxol) and post-polio syndrome. Have any polio survivors been through treatment for breast or other cancer? Did you take taxanes, and if so, how did it go? Any perspectives on the theoretical concern about substances which damage the brain stem in people who already have damage from polio? Statistics show the taxol would make about a 3% survival difference at seven years, and we are trying to decide whether it is worth it. Thanks, Elaine, California
ITEM CYH800
I have recently been diagnosed with post-polio syndrome. My breathing is a major problem. I had a spirometry test that shows very low respiratory muscle force. In addition, it indicates I have emphysema. Sleeping is almost impossible. Is there anything that can be done for me? Paul
Response: Posted 1-05
COPD (chronic obstructive pulmonary disease) and emphysema are usually related to cigarette smoking. If this is part of your problem, the treatment for this is different from any polio-related breathing problem you may have. Occasionally polio survivors are told that they have COPD and emphysema when most of their problem is actually polio-related. Some polio survivors do have both types of breathing problem. All pulmonary physicians are experienced treating COPD and emphysema, but not all are experienced with post-polio respiratory evaluation and care.
Many polio survivors have experienced breathing problems later in life. Sleep is often affected first; and when sleep is poor and disrupted, people often experience decreased energy and an emotional low. As an immediate temporary strategy, sleeping sitting up often allows your diaphragm to function better at night, and thus both sleep and breathing may be easier. Also, use any advised COPD medication if you have been a smoker and have chronic bronchitis due to this (and of course avoid smoking). Many good medical centers have a neuromuscular clinic, often sponsored by the MDA (Muscular Dystrophy Association) – you might want to have a follow-up there (check with your local MDA office, or with your local polio survivors support group).
It is important to evaluate the polio related breathing problem separately from COPD (smoking related problems) since the treatments are quite different. Many pulmonary physicians today have experience with helping people with neuromuscular disease, including polio survivors. A pulmonary consultation from a physician experienced in NM disease should be very helpful. If your respiratory muscle function is weak, related to post-polio syndrome (PPS) then there is excellent noninvasive treatment that is usually very helpful in assisting breathing and assisting effective cough, and also improves sleep quality. Again, it is important to find a pulmonary physician who has experience helping people with neuromuscular disease, including polio survivors (sometimes you can obtain advice on this from your local MDA office, or from your local polio survivors support group). Also, International Venitlator Users Network (an affiliate of Post-Polio Health International) lists some of the experienced professionals, by location (for each state) in their printed and online Resource Directory for Ventilator-Assisted Living.
There is a great amount of information about post-polio breathing problems and treatment, some of it is online, such as:
- Information about Ventilator-Assisted Living
- Assistance for Breathing Problems of Polio Survivors at www.skally.net/ppsc/breathe.html
Read through these two discussions 2-3 times, so you become familiar with the details. Then when you see your physicians you will be able to discuss the issues together more effectively.
The bottom line is that:
- It is important to get help from physicians experienced in NM disease and polio related breathing problem.
- Available treatment is very good.
Do not be discouraged. Many polio survivors have lived for many decades with polio-related breathing problems, and have been able to stay active and thrive.
With all best wishes, Edward Anthony Oppenheimer, MD, FCCP
Pulmonary Medicine, Los Angeles, California (deceased 11-05)