Prednisone and HCM

[JudyA]

Has anyone had any experience with Prednisone usage and HCM? Here is my situation.

I have had asthma symptoms since they started doing stress tests on my heart for the chest pain I was having. That started about 6 years ago. My mother had struggled with asthma for several decades, so I have accepted it as a valid diagnosis, and have taken various asthma meds for the last several years.
When I was diagnosed with HCM in December 2006, and as I have read many posts here about asthma being a common misdiagnosis for HCM, I had hoped that my symptoms would minimize, and for several months they did. But as I got to being forgetful in taking my asthma meds- the symptoms always return.

While I was still in Utah, in May, I got a really bad cold/cough that hung around for 6 weeks. I was sick of being sick so I went to a respiratory doc who prescribed Prednisone 40 mg for 5 days, and it did the trick. And yes- she said she was familiar with HCM.

Then I had no major asthma issues until I returned to Ohio in mid August. At the end of August, I went to the emergency room with a high fever, was hospitalized for 3 days with pneumonia. After the fever broke, I went home with my typical asthma meds. I use Advair 500/50, Albuterol or Xopenex as my rescue meds. When you have asthma, no cough or wheeze goes away easily after any repiratory illness. I got back to work but at different times and places(like at work) my symptoms kept really getting severe, and several times I would be gasping for breathe after moving about in the room. Now I think we all can agree that the patient is the one that is supposed to be sick- not the nurse taking care of them!! :-)

So I went back to my primary care physician about 12 days ago, and he started me on Singulair and another steroid regimen, ie Prednisone 60 mg for 5 days-40mg for 5 days-20 mg for 5 days. After 2 days on the Prednisone I started to feel human again, and asthma-wise I feel good. By the way, "just so you know", after 6 weeks of practically coughing out my toenails, I LOVE what Prednisone can do for me. But 2 days ago I had some disturbing symptoms. I was 2-3 hours late taking my beta blocker, and I could feel my heart pounding so hard at about 120/min. Just like the old days!!!! I just about started crying...I couldn't believe it- I haven't felt that strong a heartbeat since my alcohol ablation(and I felt a little chest pressure too)

Sooo, much as I hate to ask the questions, should Prednisone be avoided in HCM? Could these type symptoms be temporary? I would really appreciate any input anyone has to offer- Thanks

Judy

[Toogoofy317]

I too have had to be on prednisone (for Crohn's disease) and I absolutly hate it, do to what you describe. Unfortuantly, a common side-effect with the prednisone is elevated heart rate. It also had other effects on me as well such as nervousness and just shaking. I remember once going out with friends to eat japanese I couldn't even hold the chopsticks do to my hands shaking so bad. I could not sleep at all I felt like climbing the walls.

So, at this point I avoid it at all costs. It really stinks that the answer for one disease is catastrophic for the other.

Mary S.

[Reenie]

Judy, have you looked into allergies? What's setting the asthma off? Is one of your coworkers using a perfume that bothers you, is the cleaning lady using a cleaner that you're sensitive to? I take Clarinex, Singulair, Flonase, and Advair for my allergies and asthma and I use them year round because where I live now I have allergens that set me off year round. I've never taken prednisone but I know how albuterol can make me feel. I would start searching for the trigger.

Reenie

[JudyA]

Reenie,

Boy could I really get started on triggers. Doing that would certainly get my blood pressure way up! Aww what the heck- here goes! <grin> The logical side of me knows that I tested virtually negative for allergies about 4 years ago. I was mildly allergic to ragweed. My primary doc has me set up for a consult witha local resp specialist for the 13th of November, and we have already discussed allergy retesting after that.

My home is what is making me sick, and I know it, and so does my doctor. My husband has been told about it- and doesn't seem to care. For at least the past 5 years we would get water inside the lowest floor(family room) whenever it rained really hard for days on end. I was already symptomatic and could only do so much cleaning myself. We don't have the means to have mold removed professionally and have done the best we can. My husband doesn't take directions very well and only half cleans up anything.

A tree limb came through the roof in December of 2004- there was mold forming from the chronic leakages and the insurance money was not enogh to get the job done and so my husband just kept patching it thinking that was enough- with all of that- that is one of the reasons that I decided to go visit my sister in Utah- I ran away from home- sort of. I returned to Ohio because I needed to try to patch up family relations, not because my house was fit to live in - for me(the air in the houe doesn't seem to bother anyone else). The roof only got repaired since I got back since I kept insisting.

The plumbing also has been deteriorating and has lead to chronic leaks which is still now producing mold problems. The next cleanup scheduled to try to remove nasty triggers is to spray the spots from the plumbing caused mold with tsp,beach etc. Pretty stong stuff for my sensitive lungs so I am depending on my husband to do it when he gets around to it. .....someday soon I hope. I did remind him this morning that I only have 5 more doses of prednisone to help keep my asthma in check.

My only other solutions to this would be to leave my family and get my own apartment , but I really don't have the income- or potential income to make that kind of move-since I do not know if HCM will prevent me from working at some point.... so I am kinda stuck.

Sorry for all the negativity- but it is reality for me.


Judy

[Reenie]

I'm sorry to hear that your house is your main culprit. I wish I had some answers for you. Maybe bringing your husband with you to the doctor so he can explain it all to him will help your husband take your concerns seriously. Maybe you can try allergy meds like zyrtec, clarinex, or allegra in the meantime. Good luck.

Reenie

[Cynaburst]

I also have terrible allergies. I take Allegra and Singulair every day, and it has helped me alot. While I don't have asthma per se, I do sometimes wheeze from respiratory problems, and have on occasion had to take Prednisone when it has gotten really bad. Since taking the Singulair, this hasn't happened.

[JudyA]

Mary,
Thanks for your info. Yes it really does suck for the answer for one illness sets the other one off. Towards the end of my last doctor's visit, we were sort of doing some 'tongue in cheek' medical humor about how each doctor who specializes thinks that their speciality( or organ) is the most important, the heart, the lungs, the brain. "Nothing else matters if my organ doesn't work right!" But, juvenile as it sounds for them to feel that way, they are right! In my case, first I felt raunchy because I had undiagnosed and untreated HCM, then I felt wonderful enough to race down that treadmill, but my knees and feet complained, and so now my lungs are giving me fits, and my heart may be working much better, but I am back to feeling raunchy if I can't get enough oxygen to it and all of my other parts!!! LOL Isn't getting old sooooo much fun??

Reenie and Cyn,
yes I am working on the allergies angle. I had forgotten to mention that I do take nasonex to stop any nasal allergies from complicting things,and just started taking singulair. Only time will tell. Yesterday, I found another mold hangout that had been overlooked- eventually I may find and destroy enough mold so I can feel good. I just worked another 2 night shifts and wasn't short of breath at all at my patient's house- so I think I can rule out cat allergy for the time being. (He has two very affectionate cats) I know that anyone can develop new allergies at anytime in their lives, so it will be an ongoing process to make sure I am not developing more triggers faster than I can eliminate them. hehe
The husband angle is a whole other matter- he figures we all have to die of something- he has not been to a doctor for a physical - ever! And he is 54. Am I the only one here with a less than supportive spouse? I know, I know- that should be a totally different thread.....

[felixdacat]

I will post for the first time in a while because this subject is current for me.
I am 2 ½ years post Myectomy and in reality, the only thing wrong with me since the surgery has been my sinuses. When they get really bad, they bring on some very HCM like symptoms.
I went into the spring Allergy season by going to my ENT and being put on Singular and two sprays, Nasonex and Astelin.
Initially, I got decent results. I went from everyday problems to just once or twice a week.
I kept this up through the summer, but once the fall allergy season hit things got much worse.
This past Monday, my ENT put me on a six day strategy with Prednisone. He knows all about my HCM and considered this the next best step.
The strategy with the Prednisone is to take 6 tablets on day one, 5 on day 2, etc. I can physically feel it working. The pain is way down, plus I feel a tingle throughout my face. However, I’m now on day 3 and I believe that last nights insomnia was a side effect of the steroid.
The next step in this plan is for me to get a CT Scan which possibly will lead to the need for surgery. Will see, hope not.

[mtlieb]

Judy,

I can relate my very limited experience with you. I took Prednisone for a very brief period back in 2003 when I had sinus problems. I had to go off of it almost immediately because it caused my HCM heart to go all wacky on me. As soon as I got it out of my system the symptoms went away so I do know that the Prednisone was the culprit. However, bear in mind that this was before my myectomy and my obstruction/gradient was very high at the time. I might well be able to tolerate the drug now with little or no difficulty as others here have.

Jim

[randsean]

Judy,
A few comments that may help. My family has tremdous allergies including environmental and food. I can not be in a basement for more than an hour without getting a bad sinus headache. Nasonex helps keep them in check. I run a de-humidifier down there year round. Eliminating anything that absorbs moisture, like carpet and cardboard will help. The other thing I did was to "dry-lock" the walls. It is a paint that helps block moisture.

My son Tyler takes Singular, and Pulmicort to help with attacks. We try to avoid the prednisolone by very carefully following his Asthma sick plan.

Best wishes,

Sean

[shirleymahoney]

Judy

I was put on prednizone, but after 3 days my BP shot up to 217/110 and had to go off of it I gues I'm the type person that can't take it


P.S I don't think it will harm you but if your heart rate speeds up maybe you shouldn't take it, and call your DR

Shirley