Questions From the Spring 2009 Support Group Meeting
Respondent:
Stephen P. Kraft, MD, FRCSC
Questions:
- My wife gets BOTOX® injections approximately every three months. During the first month after the initial injection, she experiences all kinds of problems. They are not the same each time, but are quite harsh. During this month, her eyes do not readily improve. However in the second and third months results are quite evident. Some of the problems in the first month are that her eyesight will slant, while the other eye is not too bad. Every month, immediately after the initial injections, brings a new set of problems. Is this a common occurrence or rather specific to my wife?
- I gave her one but, because of other medical problems, she was not able to take it. In fact, it was the oral medication that brought her problem back.
- I know that the doctor did lower the dosage after the second treatment.
- So, I can bring this up on behalf of my wife?
- I have a question regarding dry eyes. I have been using REFRESH, without preservatives, for two months now and my eyes are constantly burning. I try several kinds, and this seems to be the best of a bad lot.
- The thicker liquid REFRESH does not work as well for me.
- How soon will I know if I have the right one?
- There is another Canadian product called Tears Naturale Free by Alcon that is re-closable.
- I have been taking BOTOX® treatments about every three months for a good number of years and I have tried just about every teardrop solution mentioned. I get pretty good results, but every now and then my eyes get itchy. I rub the eyes to relieve the itch but only end up with sore eyes. I was wondering if there was some kind of salt that you can put on to take the itch out of the eyes and soothe them somewhat.
- Do you have a preference or recommendation as to what drops to use; with preservatives or drops with no preservatives?
- I have heard that benzalkonium chloride used as a preservative is actually an eye irritant.
- What causes the droopy eyelid when you use the toxin?
- Is salt water okay to use to bathe your eyes? The salt has to be preservative free like sea-salt.
- It is a very cost effective solution.
- It appears that my current injection dosage is not giving me the desired effect. If I were to go to a higher dose to get the benefits I desire but don't get them, could I ever return to my current dosage, or am I stuck at the higher dosage?
Q. – My wife gets BOTOX® injections approximately every three months. During the first month after the initial injection, she experiences all kinds of problems. They are not the same each time, but are quite harsh. During this month, her eyes do not readily improve. However in the second and third months results are quite evident. Some of the problems in the first month are that her eyesight will slant, while the other eye is not too bad. Every month, immediately after the initial injections, brings a new set of problems. Is this a common occurrence or rather specific to my wife?
Dr. Kraft:I have a number of patients who do not get relief right away. It may take 2 to 3 weeks before the toxin starts to take effect. We do not understand why but, we do know that the toxin gets into the muscles within 3 to 4 days.
It could be that where the toxin is being injected is not best for her particular muscles, or, it could be that the doses may not be high enough, or, it may be that she should be on an oral medication -- a low dosage for the dystonia.
Q. – I gave her one but, because of other medical problems, she was not able to take it. In fact, it was the oral medication that brought her problem back.
Dr. Kraft:There are about six different oral medications that are used for this type of situation. It may be that the first one did not work. But perhaps the alternative ones may work. I have patients that are on a low dosage of one of the oral medications that manages to keep things even during the first couple of weeks until the toxin starts to work.
Q. – I know that the doctor did lower the dosage after the second treatment.
Dr. Kraft:It also could be where it is injected because the closer you get to the eyelid the more likely you are to get into eyelid problems. Whereas, the further out the injections, the effect will be the same but you will not have the eyelid problems. Therefore, it is a matter of changing the dosage of the injections as well as the injection sites, and, if the maximum amount that they give is not enough then, the oral medication will get one through the last two weeks of the cycle as well as the first two weeks after the injection.
Q. – So, I can bring this up on behalf of my wife?
Dr. Kraft:Absolutely: logically the side effects she is getting seem to be related to the eye problems she is experiencing and something has to be looked at in terms of the injection sites.
Q. – I have a question regarding dry eyes. I have been using REFRESH, without preservatives, for two months now and my eyes are constantly burning. I try several kinds, and this seems to be the best of a bad lot.
NOTE BENE: In the following answer, neither Dr. Stephen Kraft nor BEBCRF advocate or support any specific brand of artificial tears. Brand Names were simply used to illustrate the different kinds of tear drops available.
Dr. Kraft:It would be preferable to use the artificial tears that have no preservatives. However, not everyone responds in the same way to the various types of artificial tears. Everybody's tears are different. If you remember your high school chemistry some tears are more base-oriented, others tend toward neutral, whereas others are more acidic in nature.
Therefore, the same criteria must be used when selecting the type of artificial tears to be used. Some people are sensitive to the preservatives that are used. There are many different types of preservatives that are used and, if I have a patient, whose eyes tend to get irritated. I suggest the artificial tears without preservatives. Now you have one (REFRESH) and the other that I suggest is BION - in most cases this works. You may purchase it over the counter.
Another brand, with preservatives, that is more "base" oriented, is called ISOPOTOTEARS. The one that is more acidic is called TEARS NATURALE, and, there is one called HYPO TEARS which has less salt in its content. There is something else that may be tried, and that is a thicker preparation. There is REFRESH drops and REFRESH liquid gel.
Q. – The thicker liquid REFRESH does not work as well for me.
Dr. Kraft:Then it may be a case of chemistry. You may have to try different types of artificial tears before you find the right one for you.
Q. – How soon will I know if I have the right one?
Dr. Kraft:Applying the drops for a week to 10 days should be enough time to tell you that all is okay. Another solution used by some patients is to use the liquid tears during the day and to apply the gel at night. It is a question of mixing and matching until you find the solution that suits you best.
By the way, once you have found the right one, you may use it every hour because it has no preservatives -- in other words, use it as often as you require. However, remember that you cannot leave it open, since it has no preservatives to prevent the growth of bacteria.
Q. – There is another Canadian product called Tears Naturale Free by Alcon that is re-closable.
Dr. Kraft:Yes, that is a good one, but you must remember that it is on the acidic side.
Q. – I have been taking BOTOX® treatments about every three months for a good number of years and I have tried just about every teardrop solution mentioned. I get pretty good results, but every now and then my eyes get itchy. I rub the eyes to relieve the itch but only end up with sore eyes. I was wondering if there was some kind of salt that you can put on to take the itch out of the eyes and soothe them somewhat.
Dr. Kraft:Again, there are different reasons for what you are experiencing. It could either be dryness of the eyes or an allergy. What you are describing is more of the itch and the irritation is more likely to be due to an allergy, or, some kind of topical sensitivity. For that you would have to have someone look at the problem for any signs of allergy, because there is medication to control that during those times that we are most susceptible to the allergy. I'm not sure but I would think that you have this during certain seasons of the year and under certain conditions.
Some of the teardrops are safe to use during the entire allergy season. Itchiness sounds more like an allergy rather than dry eyes, so the right medication can control that for you during these seasons. As far as a salve is concerned some people use tea bags or warm compresses. Sometimes a cool compress may be more appropriate.
Perhaps an antihistamine may do the trick during those times of the year. There are allergy drops that can be used in the eye which are very effective, and you do not have to use them that often. The only thing is that you have to use them during the time that the allergies will flare up. For example, now that we are in the spring with pollens aplenty.
Q. – Do you have a preference or recommendation as to what drops to use; with preservatives or drops with no preservatives?
Dr. Kraft:Drops with preservatives are fine and they last longer; you don't run into the problem of having to throw them away after being open for so long. In terms of cost, they are very effective. If you can tolerate them then that is good. What is most important is the chemistry of the drops rather than the preservative. The doctor will usually give you some drops that the local Pharma-rep dropped off that day. If they work, stay with them. If not then you have to experiment with various kinds and concentrations remembering, all the time, that it is the chemistry (base, neutral, acidic) that is the most important factor.
You start with a drop that works for you well and lasts, hopefully, for a number of months. The preservative only becomes an issue when you start to lose the effect and it becomes more irritating putting it in. Then you need to go to another drop with the same chemistry but a different preservative, which will then be okay. You do not have to go to the non-preservative one right away, because you might as well use the drops and have them last as long as the vial is meant to last. It is only when you have tried more than one different preservative that you should switch to one without a preservative.
Q. – I have heard that benzalkonium chloride used as a preservative is actually an eye irritant.
Dr. Kraft:You are absolutely correct and that is one found in many of the brands out there. So, when searching for right brand, look at the ingredients on the bottle. The preservative, remember, is necessary to keep the drops sterile for a long period of time.
Q. – What causes the droopy eyelid when you use the toxin?
Dr. Kraft:It is the spread of the drop. There are two muscles in the eyelid; the one that is in “spasm" or forcing the eyelid to close, and that one is innervated from the seventh cranial nerve, which is the nerve that goes to the muscle that makes your eyes close. The other muscle in the eyelid is called the levator muscle, and it is innervated by a different nerve. The muscle runs in the middle 75% of the eyelid, so, it is absent from the outer and inner 20% of the eyelid. If the toxin is injected too quickly or too close, (we try to keep it off in the corner) toward the center of the eyelid, which is paper thin, the effect will be the same as if you had oil under plastic wrap on your kitchen counter -- the oil spreads like crazy.
The toxin, which is already dissolved in the fluid, has to be injected far enough out or directed away from the center. It will percolate to the second muscle, the levator muscle, which brings your eyelid up and down and causes the droop. The fortunate thing is that I have never seen a permanent one: it tends to go away after 4 to 6 weeks. It all comes down to how quickly it is injected along with how much fluid (concentration) is injected and the location of the injection.
Q. – Is salt water okay to use to bathe your eyes? The salt has to be preservative free like sea-salt.
Dr. Kraft:Your tears are salt water. It is fine as long as it is not too salty. Tears are on the salty side, like 1%, so you have to make sure that the water to be used is not too salty. The best thing to use is distilled water from the pharmacy at room temperature. It is sterile when you buy it. Make certain that the container you mix the water and salt in is clean.
Q. – It is a very cost effective solution.
Dr. Kraft:This reminds me of something concerning the gentleman's previous questions about the salves and such. People with dry eyes and/or allergies also get a little oily build up along the eyelid and this is called blepharitis.
What is very helpful for this condition is baby-shampoo scrubs. Take a capful of baby shampoo and put it into a basin of warm water and with a cotton ball dipped into the soapy solution rub or wash along the edge of the eyelid. It will help to get rid of the itchiness. In addition to the topical allergy, you tend to get an oily build up along the edge of the eyelid or eyelashes, which causes irritation and itchiness.
Do this three or four times a day during the time that it is bothering you, that is, when you have, the symptoms. Do it for a week or two, and when it becomes more comfortable do it twice a day: morning and night.
When you have allergies, your eyelids tend to get a little dry, and it is that dryness that promotes the oils in the eyelids to create irritation. It is like shampooing your hair to get rid of oils in your hair. Your eyelashes are hair and they collect the oil, and, this must be shampooed out.
Q. – It appears that my current injection dosage is not giving me the desired effect. If I were to go to a higher dose to get the benefits I desire but don't get them, could I ever return to my current dosage, or am I stuck at the higher dosage?
Dr. Kraft:To begin with, the side effects will be higher with the higher dose. So if the effects are not negative there is no reason to keep you at the higher dose. It should be noted that the injection sites, must be the same. Only the toxin concentration has increased. So if it does not work there is no reason to continue the higher dosage.
However, for whatever reason there is a 5 to 6% chance that a given treatment will not work for reasons that we do not understand. The vial containing the toxin is within a couple of percent accurate as to strength; in other words, it is not a fluctuation in the concentration of the toxin.
Therefore, it is more likely some innate property of the muscle being injected that causes the injection not to work well, or, not at all. Often if you give it again it will work well. On the first try, it may not have been absorbed properly or it did not get into the muscle correctly and this is when you should repeat the higher dose.
If it was me that was faced with the situation, I would go 50% higher to the highest dose possible. There are actually three levels. So if it did not work after two rounds of the higher dose I would go to the highest dose and do two of those before giving up. However, it is unusual that both of the first set of dosages would fail.
Some of my patients at the higher dose may find it to be too strong. And I would take them back to the base dose and it would work fine. Patients who have had eye surgery, I take right back to the base dose and they are also fine.
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