I posted yesterday about my recent experience with getting a bad cold, having four Grandchildren (and their parents) living temporarily with us and two currently with sore throats, and calling a local hospital about availability of Regeneron Infusions. I took a COVID pcr test on the 15th, and got a Negative result on the 17th. We also took care of a two year old for three days last weekend, because her Mother has Covid.
On the 15th I called the local hospital, found out the ER has a separate section that does the Regeneron Infusions, spoke to a Nurse Practitioner and explained what I said above. She said she would schedule me for an Infusion the next day, and I declined saying I don't know yet if I'm positive. She said that having CLL and with the exposure I had with the baby and the grandchildren I qualified, and I said I'll wait for the test result. She urged me to call in the Morning about the result.
The next Morning the online site said the test from Walgreens was sent overnight and wasnt there yet. So I decided to wait into the evening. Around 6pm the test had been received but not yet analyzed. I called the ER again and a different Nurse Practitioner suggested she schedule me for 2pm the next day. I asked if the infusion could hurt me if I didnt have Covid, and she asked a doctor. The doctor said it could effect me negatively and also might not. I accepted the 2pm appointment for yesterday Friday. On Friday Morning the result was online and I was Negative. I called the ER and cancelled my appointment for the infusion.
My questions to the very knowledgeable here, like all of the volunteer moderators and others, are these:
1) Was that doctor wrong, and would the Regeneron Infusion not hurt me even though I tested Negative;
2) Should I have taken the Infusion anyway because I'm pretty sick with a cold (with productive yellow phlegm); have of course very low IgG and very low other Ig numbers, have a history of Pneumonias (5 lifetime and 2 since 2016), and of course the Grandchildren with two of them with sore throats? I figure they can't be positive with me testing negative, since my immune system is so weak.
3) Was I stupid not calling my doctor office before the weekend about the cold, and asking for a strong antibiotic? I felt like the cold was abating yesterday Morning and then it got stronger again last night. I know I'm severe risk for Pneumonia, have had both Pneumonia vaccines and produced very limited numbers of antibodies to those shots. My worry is using antibiotics too much, if I ask for them with every cold that doesnt go away in three days, due to the risk the microorganisms will then become resistent to the antibiotics.
I hope the really knowledgeable members see these questions and provide input.
Carl
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wizzard166
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I am not one of the experts, however, my understanding as the following linked article states, is that exposed with CLL or other vulnerable immunity compromising illnesses, we need to get Regeneron if we can. I would hope you can still get it.
You do not want to get sick enough to be hospitalized. And you need to get it before the 10 day limit that has been set.
I do understand your actions---there is so much confusion around the virus. And, it appears the supply is being held closely and there are reports of the supply being limited in some states that have used most of their supply. So if it is offered to me at any point I will take it.
The fact of the tests being less than foolproof as well as their being a spreading of the virus even without having the symptoms by even the vaccinated, makes it clear to me that my best move is to get the protection the monoclonal antibodies afford. We are protecting more than ourselves by doing that. We are possibly helping to keep a bed open for one who needs hospitalization for other than Covid.
No you are not stupid, you did a reasonable analysis and made a choice. I would have chosen the infusion for me. I would argue that you did get incomplete advice from your doctor on the risk of mab therapy.
You asked the doctor if regeneron therapy could hurt you. Your doctor gave a true, but completely useless answer, it might or it might not.
You can give that exact same answer for virtually every drug known to man. Aspirin can cause Reye’s syndrome. Tylenol can damage our liver. Antibiotics can disturb our gut bacteria. And on and on.
To me, your doctor should have at least attempted to quantify the risk and then compare it to the risk of you getting covid and having Cll.
The incubation period for covid is up to 2 weeks, although most infections occur within the first week after exposure.
Now suppose you figure your risk at this point of getting covid is low, maybe 1 in a hundred. Now suppose the risk of any serious side effect to a mab infusion is one in a thousand. In that case even though it’s true the mab infusion comes with a slight and perhaps unknown risk, that risk pales in comparison to the known relatively high mortality risk covid brings for us.
I just used those percentages as a hypothetical, I don’t know the real odds of any serious issues with mab infusions. Given that Florida is giving mabs away without a prescription, that would argue it’s a well tolerated drug.
You made the choice you thought best. But if the driver of that choice was a concern a mab infusion would be injurious to you, then I think the doctor failed in not explaining that risk to you and balancing that risk with the risk of covid due to your exposure.
That’s just my two cents, others might see it differently.
Thanks for the input. It wasnt a doctor I had access to or know, it was a doctor the Nurse on the phone asked in the area she worked. Frankly I thought the answer was ridiculous, but I decided to pass on the infusion due to the Covid test showing me Negative. Now I'm more worried about my history of Pneumonia and this cold that is in its fourth day.
Yellow sputum can indicate a bacterial pneumonia is potentially brewing, please keep in touch with your docs during the course of this illness. The dead cells in the yellow can be a food source for bacteria. And get/use a Pulse Oximeter to monitor your oxygenation levels, if it is indeed a slow-growing or low level Covid infection, dropped oxygenation in the body seems to indicate disease severity.
I gave into my reluctance to be treated with antibiotics yesterday, and being Sunday went to a walk in ER. They actually took an X Ray and said Patchy Infiltrate in the lungs but not Pneumonia yet. The doctor gave me Azithromycin and Augmentin 5 Day Treatment, and I seem a bit better today after my first doses yesterday. I'm scared and don't know what to do, but I guess I've done what I can. The Covid Pcr test said Negative (taken on the 15th), so I didnt take the offer from Boca Regional to give me the Monolonal Infusion.
I'm such a huge risk for Pneumonia, and a couple of my hospital admissions for that were because I had a basic cold that I couldnt beat without medication. After not giving in for seven days in each situation, I ended up barely breathing in an ER. This one today doesnt seem to be getting any worse, but a few times I coughed up stuff; when, I wasnt coughing up stuff in the prior five days. That got me depressed a bit, and a little frightened, but I've quieted down in the last two hours while working on the computer. Maybe the antibiotic is doing something, and that is why I'm now having a productive cough. I don't feel worse otherwise, and no fever.
Stay hydrated & bundle up, a slightly elevated temp kills off viruses as well as bacteria. The "coughing up stuff" is generally thicker clumps of mucus breaking away from your lungs, and shouldn't worry you excessively since you now are on treatment. Normally, the cilia in our lungs bring excess mucus/debris (pollen, other air contaminants, cell remnants if fighting an infection) up out of our lungs to drain harmlessly into our stomach. If the mucus is too thick, it breaks away and some of that gets "coughed up". This is called a "productive cough" when you are bringing up stuff. Productive coughs can be a sign of infection (yellow or green) or simply lungs bringing up allergens & other particulates. Productive coughs (some people have chronic ones) should be monitored by a health care practitioner. You saw the docs & it appears you stopped whatever caused this from getting to the "pneumonia" stage. I don't know where you are geographically, but weather changes as well as particulates like pollution, wildfire particulates, pollen, and mold spores, all can affect coughing and cough production. So it sounds to me like you got to the docs in time, and your lungs are shedding stuff so rapidly your cough is now productive. Unless it is now changing colors (deeper yellow, or green, or black, or contains blood) you probably are doing fine. Try not to stress/worry, you got to the docs before pneumonia set in! You have some sort of follow up with someone in a week or so, yes? A Pulse Oximeter should give you some peace of mind, you can verify that your body oxygenation remains stable/OK. Hydrate so your mucus stays thin, bundle up/keep warm to prevent any potential viral/bacterial bug from growing. If you enjoy heat, a heating pad on low to the chest area (or hot water bottle, or a hot bath) can target that area specifically.
Today I am better than yesterday. The amount of coughing is vastly reduced, and I'm not getting anything up. I'm going to finish the five day regimen with the Augmentin and Azithromycin, even though it might not have had anything to do with my recuperating. I say this because colds are virus in nature and antibiotics don't kill viruses. I wanted the antibiotics because when I can't beat a simple cold for too long, it weakens my immune ability (which is already low) to make me more susceptible to anything including bacterial. So I figure that getting the antibiotics into my system at least protects me from a new bacterial infection, and give my body a chance to finally shred the viral cold.
I get to see Dr Jennifer Brown at Dana Farber on September 28, and fly out on the 27th, and I was getting anxious about being visibly sick when i got to the airport. Now it looks like I'll be fine by then. Hopefully this latest bout with infection didnt spike my WBC too much, so Dr. Brown will have valid numbers to compare to the last six month visit.
Your reasoning behind finishing the antibiotics is correct. Us immune compromised can get weakened by a virus, then opportunistic bacteria can take over and cause a pneumonia on top of the virus. If it even is a virus causing the initial irritation, lung irritants from other causes can also allow a bacterial infection to set in! My mom had this problem, with lung damage from years of smoking. She would get lung irritation from something minor, then a bacterial infection would start. With your stated history of pneumonias, it sounds like you may have a similar problem. So your current antibiotics are preventing an incipient bacterial infection, while you recover from the initial irritant. I hope you feel better soon!
Buy the home test, so much simpler. You know whether your positive for covid in 15 minutes.If you test positive, go get the clonal antibody cocktail a.s.a.p
So very very important to catch covid early. Many many have died because they delayed.
You can only get infused as an out patient. If they admit you, say good bye to clonal antibody treatment. Because you will no longer qualify for it.
Any symptoms...test test test. EARLY DETECTION IS THE KEY TO BEATING THIS DISEASE WITH THE CLONAL ANTIBODY COCKTAIL.
The people I know who have caught covid have caught it from their 12 yesr old children. They have done the home test and it has turned to positive very quickly.My family do the tests twice a week and before coming to my house.
We still social distance and ventilate the house.
Everyone we mix with has to be trusted to do their best to avoid covid.
The home tests are the best way to catch covid early and also to avoid spreading it.
I have not heard of any negative issues from taking the monoclonal antibodies prophylactically. In fact, that was actually discussed for high risk patients. Our bodies are full of antigen specific antibodies and they do not cause us any harm at all.
Hi Carl,1) it's a pity that you had indirect information from the doctor about the risks. Basically, our bodies can react to infusions of what is normally present in our blood. Hence premeditation for IVIG, which is simply a boost of donated immunoglobulins that we would have made anyway, if our CLL wasn't restricting our production capacity. Monoclonal antibodies (MABs) are just artificially made antibodies, similar to what a healthy person who has recovered from COVID-19 would make. Nurses monitoring our infusions know the signs of infusion reactions and how to respond to bring them under control. There is also the small risks of infection, tissuing (the infusion fluid going into the tissues, instead of the vein), bruising and so on. Also, given the similarity to IVIG, you might be more tired for a day or so or develop a headache. All of these are minor risks compared to a COVID-19 infection, plus it may be possible to have the infusion via injection/subcutaneously.
2) Having the infusion would have provided you with waning protection for a month or so. IgG infusions have a half life of about 3 weeks, but the COVID-19 MABs include a structural modification that slightly extends their half life.
3) Whether or not to start antibiotics when you have a cold is hard to determine at the best of times. Antibiotics aren't antivirals, but they can help us overcome secondary infections, such as pneumonia caused by bacteria making the most of the opportunity to grow in secretions in our respiratory system in response to our cold. Ideally, they should be only prescribed after a physical examination, but with a history of pneumonia following a cold, your CLL specialist might prefer you to start antibiotics prophylactic ally. It's indeed a trade-off between reducing the risk of bacteria developing resistance and making it more difficult to tackle infections in the future vs managing the current infection.
Thank you Neil, you are always such a help in understanding or evaluating things.
When the crisis point was there, with regard to starting Regeneron before a positive or negative test result, I wanted to reach out to either my new Immunologist or my Primary. Unfortunately both are Jewish and it was Yom Kippur, so their offices were closed. I wasnt about to bother them with an urgent call either, so I just made the decision. It looks like I'm improving tonight, which is a big factor, because these damn cold/flu things always get worse into the evening. So I imagine I'm over the top, and tomorrow will be even better.
At least I got a chance for a trial run, at what to do with respect to calling a place that helps with the infusions. I also know here in Florida I can get an appointment for an infusion with one of the 26 tents the Maguire Corporation has set up. So I now am more prepared in case I really need to get infused quickly.
It is my understanding that you are correct, because the artificially created antibodies are structured to be attracted to the spike protein on the COVID virus.
You are considerate towards others and working hard to take care of yourself, too. Sometimes life gives us these puzzles where the way is not clear. Be satisfied you made the best decision possible at the time. Perhaps it was the best one. The ER could have had many people with serious covid infections who actually needed the infusion, and from whom you could have gotten sicker. If you do have the type of coronavirus that is the common cold, you will more easily recover having stayed home resting. I hope you can get the good care you need and the rest you need to recover fully, soon.
I had had a blood infection awhile back, and wanted to return to the ER when I felt a sore throat. My daughter made me a strong cup of ginger lemon honey tea. (Grate a lot of fresh ginger, steep 10 minutes, add a lot of fresh lemon and honey.) Immediately I felt relief and I did recover. Best wishes for a full rapid recovery!
Productive yellow phlegm -- I had this when I was pregnant years ago. I was sick for weeks and getting sicker. Nothing helped until I got a course of Erythromycin. As soon as I swallowed it I felt like something powerful was cleaning the infection out of my blood. I quickly recovered.
I would suggest having Binax, the COVID home test made by Abbott Labs, on hand so you could get a quick answer regards possible infection in the future.
Your doctor or nearby medical clinic that has an infusion center may be able to administer REGN-COV in the future should you ever need it. So you may want to find out what your options are before the need would ever arise.
I understand that there is an allocation of REGN-COV right now. For those in The US, I believe we should advocate for increasing the supply of this treatment to make it more readily available first of course to those who have the highest risks but even more broadly if and when the inventory allows - people beyond those at risk should eventually be able to choose between a vaccine or a treatment for the reasons I list below. The best way to advocate for this is to contact your Congressman whose job it is to represent you. Don’t call public health officials because increasing the supply of treatments is a money issue, not a medical issue.
1. An estimated one-third of The US population has been previously infected. There is evidence that natural immunity is more robust than vaccinated immunity from studies in Israel and by The Cleveland Clinic. There is no clear data regarding whether it is prudent for the previously infected to be vaccinated. So I can perfectly understand why these people might not wish to be vaccinated in the absence of the opportunity to make a data-driven decision. Likewise for women who are or might become pregnant. On the other hand, what if someone previously infected were to become reinfected (even if the likelihood is small)? Then they should have access to treatment. And this makes sense too because if they were to become reinfected after having the more robust natural immunity, there is no evidence that additional vaccinated immunity would have changed that outcome. This of course needs to be studied so we don’t have to guess. Likewise, treatments need to be available for the vaccinated who become infected.
2. It is a fact that the effectiveness of vaccines is waning. What happens if a variant emerges that cannot be stopped by the current vaccines? Then we should be ready with available treatments. That means not only sufficient supply but also, hopefully soon, a wide variety of treatments beyond just monoclonal antibody infusions. There are oral treatments in trials. If approved, we need to invest heavily in making them available.
3. We of course should pursue modifying vaccines to become more effective and possibly offering more enduring protection but that takes time and we need some way to manage in the meantime. That means more emphasis on treatments.
Finally, in regards to antibody response to vaccines, if you have no response then clearly treatment would be your only option were you to become infected. But what if you have some kind of antibody response? It is not clear what response levels are adequate to provide protection. Much more effort must be made to make that determination. We all want and need much more clarity on many fronts regarding management of COVID; we do have the resources and expertise - we just need decision makers that can put these to better use.
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