Beyond Frustrated, Would Like Advice

Question

I do not have COPD but my grandma does, who has had it for years and is now in what I believe to be the severe stages of the disease. To my knowledge she is on every nebulizer and inhaler treatment, daily Azithromycin and a maintenance dose of 5mg Prednisone daily. She does not use oxygen much as her oxygen levels are always in the 90s however in the past 3-4 months she has had recurrent flare ups including 1 hospitalization where they will do a prednisone taper starting with 40mg for a few days eventually going back down to her daily 5mg. After the taper, she is fine for 2-3 days and then it starts all over again, beginning with congestion, more mucus, cough and increased shortness of breath even when at rest and then they end up putting her on another prednisone taper about a week or two after she had just finished the last one. Her doctor is EXTREMELY reluctant to putting her on any more than 5mg a day for a maintenance dose even though it was suggested to him by a Pharmacist to try 7.5mg daily to see how it goes. We are beyond frustrated with the reluctance by her doctor to be so closed-minded to try an increased dose of prednisone when at this point it really seems to be the only thing that helps her as her inhalers and nebulizer treatments don't seem to work as well as they once did. He reiterates the potential side effects of taking prednisone and the risks are understood but at this point it's a risk my grandma is willing to take when her biggest obstacle is not being able to breathe. She had not experienced any of the severe side effects of prednisone despite having done so many tapers, the only noticeable one is the thinning skin. At her last doctor's visit last week when the idea was once again brought up to him about trying an increased dose he even suggested his plan is to decrease her from the 5mg she currently takes and hopefully not have her take it at all! She is on the tapers so often that at this point we're not understanding what the difference would be to put her on a slightly increased dose and see how she does when I would think the tapers would cause more damage overall if that is what they are concerned about happening. We are all at our wits end, it is hard to see her like this and to see her go through this day after day. I apologize for the long post, but I have been reading this message board for awhile and have noticed some people on here are on a higher dose of prednisone daily than what they are willing to try with her. I am looking for advice or suggestions, is it time for her to switch doctors? Thank you to anyone who takes the time to read this.

A MyCOPDTeam Member · Accepted Answer

@A MyCOPDTeam Member...Yes Pneumonia is hard to get over.  And that being said, it can take from 6 months to a year to fully recover from one episode of pneumonia.  Did you also have sepsis with it?  I had it 3 times in less than a year...I could barely put my legs over the side of the bed.  I totally understand, and yes the steroids kept me running in circles.  sleep deprivation was horrible..1 to1 1/2 hours per night is not sufficient for someone sick.  Rest is one of the best things for recovery.  and yes weight gain...Oh dear Lord.  Well nuff said...Get on that road to recovery and stay well.  Stay out of crowds, things that trigger your lungs to react badly and zap your strength.  Stay well my friend.  Blessings and Breath Easy....

A MyCOPDTeam Member · Answer

At a minimum it is time to ask her Doc precisely why they are unwilling to raise the level of Prednisone. If they won't discuss the reasoning for their medical decision with you it is time to fire them and move on. Your Grandma has a chronic, frequently terminal disease. If the Doc isn't comfortable discussing her disease with family that is the Doc's shortcoming and it shouldn't be allowed to affect her treatment. It sounds like the medication is no longer effective at the current dosage since she keeps having problems, but there may be more to it. Does she have to be hospitalized? It doesn't sound like she does, which is usually good but I'm wondering if she should be. Since the current treatment isn't working I have several other questions. Is she being treated with any antibiotics when she has these exacerbations? Is the Doc ordering a full battery of blood tests? She doesn't just start coughing more for no reason, why does it happen? You need some answers and need them now. BTW it may be that something in her physical environment is causing or contributing to this happening. People with COPD have something significant in common with people that have asthma in that they can both have breathing problems if exposed to specific chemicals and minerals.

A MyCOPDTeam Member · Answer

I would certainly have to agree with @A MyCOPDTeam Member, she knows the ins and outs of COPD probably as close to a doctor as anyone.  I would have to add that I would definitely see another doctor ASAP, even if you have to go through an Emergency Room Facility at a Teaching Hospital or Medical School....I agree whatever is growing bacteria , staph, or Acute Resp. Distress...She needs attention.  Something is not working and by listening to one person you are not giving her the chance she needs to fully recover.  Pneumonia / w Sepsis actually takes a good 6 months to a year to recover.  It's a very slow process....I've been through that 3 times in less than a year....so get her in...don't waste time...It's the right time NOW....Go...Prayers following you and keep us posted.  Blessings.

A MyCOPDTeam Member · Answer

Does she see a pulmonologist or her Primary care doc?  If the latter, then get her to a pulmonologist ASAP.  A pulmo will be familiar with the most recent meds and treatment options.  I would ask for a sputum culture because it sounds like she's never recovering from whatever bug she's growing and you need to know what specific antibiotic will get rid of it for her.  Ask for a thorough diagnostic and treatment evaluation so you get everything possible brought to bear.  If you can, go to a teaching hospital or medical school: you'll get a lot of attention in all the right areas.

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