Covid-like symptoms every 5 months so far.

[wondering1]

This happened to me twice this year. Wanted to know if anyone out there has experienced Covid like symptoms, fever, cough, shortness of breath and wheezing. Go to the doctor and get a z-pack and prednisone, by the next day feel pretty good. I have been on Imbruvica 420mg for about 3 years, with no side effects. These symptoms just manifested about February of this year(2020). Otherwise no side effects from the medication.

[lankisterguy Volunteer]

The regular readers here and on other CLL sites know that any mention of odd symptoms gets a post from me about testing for funguses and re-activation of common childhood diseases, so here it is again.

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"Don't assume you have a single disease (CLL) causing your symptoms, you could have a combination with a virus, bacteria or fungus contributing to the issues."

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We have CLL a cancer of the immune system, it allows many diseases to affect us that don't bother most people, but our hard working, intelligent doctors often forget those potential complications. See Dr. Terry Hamblin’s blog on immunodeficiency

mutated-unmuated.blogspot.c...

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In 2010 I contracted Whooping Cough (Pertussis) and an antibiotic quickly cured the bacteria infection but the cough lasted a long time.

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In 2012 I had leg cramps and fatigue that primarily occurred when I tried to drive a car, I could walk OK but not drive. A reactivation of HHV-6 (an infant disease called Roseola) was diagnosed along with progressing CLL. Treatment with Valganciclovir (Valcyte not Valtrex) in October relieved the cramps, reduced the fatigue and lowered my ALC, starting Idelalisib in December fixed my fatigue entirely.

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I was on Idelalisib from Dec 2012 to May 2015 and then switched to Ibrutinib until Feb 2016 and had full strength in my legs, I was able to ski like a 40 year old (at 68 years) but after being off the drugs for 8 weeks my ALC was only 43 but the muscle weakness in my thighs returned. We tested for all the above causes but cannot find a smoking gun beyond a drug resistant HHV-6 at log 4 x normal. I've been on Acyclovir daily since 2012, but that has no effect on the HHV-6.

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When I first started Venetoclax, Dr Furman had me taking a prophylactic medicine Atovaquone to prevent my contracting Pneumocystis. Here is what Wikipedia says it is: Pneumocystis pneumonia (PCP) is a form of pneumonia, caused by the yeast-like fungus Pneumocystis jirovecii.[1]

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Pneumocystis pneumonia is not commonly found in the lungs of healthy people, but, being a source of opportunistic infection, it can cause a lung infection in people with a weak immune system. Pneumocystis pneumonia is especially seen in people with cancer undergoing chemotherapy, HIV/AIDS, and the use of medications that suppress the immune system

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So is it CLL and an opportunistic infection? You may need to see an infectious disease doctor, perhaps one that treats other immune compromised conditions like HIV, MS, etc. to get an effective work up for these potential other infections.

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Suggest you get tested for all the HHV viruses like CMV, EBV, etc. i.e.: the entire list of HHV 1 to 8. HHV-4 is EBV also known as mononucleosis, notorious for fatigue. Note that the more common antivirals (Acyclovir and Valacyclovir) are not believed effective against all 8 HHVs, so you must be tested and treated differently if one is found active.

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Most Docs ignore these since many adults have these as dormant, latent viruses controlled by the immune system- we immune-compromised patients see them reactivated. We know about Shingles from Chicken Pox (HHV-3) but the others are difficult to distinguish from CLL symptoms. So don't assume you have a single disease (CLL) causing your issues, you could have a combination with a virus, bacteria or fungus contributing to the symptoms.

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And as others have suggested get your Immunoglobulins tested and if needed, get IVIG infusions; many CLLers have had their frequent bacterial infections stopped by that expensive but effective step.

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Since you have a weakened immune system, you should be aware that fungal infections can happen. Learning about fungal infections can help you and your doctor recognize them early. This may help prevent serious complications.

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Although much progress has been made in the management of opportunistic fungal infections, their diagnosis and treatment remain a challenge.

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Len

[prichman]

Leading up to April 1 I found myself weak and not able to walk up hills with my usual speed. Then April 1 I had fever, chills and dry cough. Thought for sure I had it, but fever was lower in the AM and cough improved, but still persistent. Then a-z for 2 weeks and felt completely recovered and strong. Negative for anti-bodies May 26 and June 16th. Still think I may have had it. Wondering 1) Does CLL incline toward lower antibody reading? 2) Reports that other immune response may come into play and that anti-body presence is not the whole story.

[wondering1 in reply to prichman]

Had a Covid 19 test and a flu test, turns out it was neither. I have strep pneumonia, which is transmitted the same way Covid is, due to my weakened immune system.

[larry54]

Hello: I have been on imbruvica a little longer than 3 years. I do not have those symptoms, but i am having problems just feeling bad. My most resent is waking up in the morning feeling dizzy. Maybe i have been on imbruvica to long

[wondering1 in reply to larry54]

I have been on Imbruvica about the same amount of time with no side effects at all. Maybe you should discuss this with your oncologist, they might be able to give you something different.

[Hidden]

Not like that but sore throat and the feeling like I'm coming down with something every 5-7 days for the first 11-12 months. Your post reminded me that I haven't had that shitty feeling for a couple months now.

Like your hematologist will tell you over and over, "it gets better".