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  #1  
Old Thu Jan 29, 2015, 10:49 AM
Rentzi Rentzi is offline
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flu shot

I have a question for all of you. My husband was just able to get his flu shot on Tuesday. His doctors recommended it last fall but due to illness and availability he just received it. Anyway, today his labs were off. Last week were the best we have ever had. Today he saw a big decrease in his wbc and neutrophils. It went down to 2.8 from 3.7 and his neutrophils were 224. That is the lowest they have been in months. We have been in the thousands. Could this be a response to the flu shot????? The rest of his labs went up. Platelets were 88 from 72 and hemoglobin was 12.0 from 11.2. Unfortunately his creatinine went up too to 1.86 from 1.7. I would appreciate any guidance because that 224 is scary.

Melissa
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  #2  
Old Thu Jan 29, 2015, 01:01 PM
Marlene Marlene is offline
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Melissa,

Try not to let one CBC get to you. I know it's difficult not to. Been there way too often ourselves. Now if it continues to decline, or if he feels off, it's possible but can be difficult to know for sure. But it's hard not to suspect it may have had some impact. Did your doctor have any insights?

Keep an eye out for any fevers, UTI's or general body aches which can indicate an infection. The flu shot may have just taxed his immune system enough to allow something that's been kept in check to take hold.

As a precaution, I would probably take his temp every 4 hours, watch for chills w/o a fever, nausea and avoid any meds like tylenol that are used to bring fevers down. Also, be sure to hydrate with fluids that have electrolytes to prevent dehydration.

If you are worried, it's not a bad idea to call your hematologist.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Thu Jan 29, 2015, 01:38 PM
Rentzi Rentzi is offline
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Thank you, Marlene. We did call his hematologist and have not heard back yet. Trying to control the panic feeling that something is wrong. Last week the neutrophils were 2490. I will let you know if I hear anything.
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  #4  
Old Thu Jan 29, 2015, 01:56 PM
Marlene Marlene is offline
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That's quite a drop. I understand your panic. I would probably ask for another CBC sooner than later so I could sleep .
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #5  
Old Thu Jan 29, 2015, 02:19 PM
Rentzi Rentzi is offline
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Hematologist wants him to have another cbc tomorrow am. If it still looks like this, he wants to put him on a preventative antibiotic. Said it is unlikely that the flu shot would do this. Here's hoping it was a mistake.

Melissa
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  #6  
Old Thu Jan 29, 2015, 02:49 PM
Rentzi Rentzi is offline
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I am freaking out because I feel like it's my fault that his wbc is dropping. I pushed the issue of a flu shot. There have been a lot of people around here sick and I was worried about him. Our doctor told us he should have one. I am so worried and so is he.
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  #7  
Old Thu Jan 29, 2015, 03:20 PM
triumphe64 triumphe64 is offline
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Quote:
Originally Posted by Rentzi View Post
I am freaking out because I feel like it's my fault that his wbc is dropping. I pushed the issue of a flu shot. There have been a lot of people around here sick and I was worried about him. Our doctor told us he should have one. I am so worried and so is he.
Better a flu shot than the actual flu.
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Dallas, Texas - Age 77 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #8  
Old Thu Jan 29, 2015, 04:02 PM
Marlene Marlene is offline
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Melissa please don't think you are responsible for the drop in his counts. I think all caregivers are prone to feeling guilty on some level. I know I would re-visit decisions and think the same. The truth is, this disease can have you second guessing your choices when things are not going well. Somehow we think we should "know" when in truth, not even the doctors can know or predict how someone will respond to medicine or treatment. You make the best decision you can and hope for the best.

I try to remember to have "tenderness for the past, courage for the present, and hope for the future". Don't be so hard on yourself.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #9  
Old Thu Jan 29, 2015, 11:54 PM
Rentzi Rentzi is offline
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maybe blood pressure med?

Ok. So I was thinking about Rorys anc drop. He was put on a new blood pressure med last week. I looked it up and lo and behold it can cause low wbc. So why would the kidney doc prescribe something like that? We check cbc in the morn to make sure it's not just an error. This roller coaster ride is tough. By the way it is hydralazine. Anyone have experience with that?
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  #10  
Old Fri Jan 30, 2015, 08:32 AM
Marlene Marlene is offline
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Well that may sheds some light on things. We have no experience with that drug but we have found that you cannot rely on your doctor or pharmacist to know all the drug side effects. Many do not experience adverse side effects so they get comfortable with prescribing a certain medicine.

I would take the prescription but tell the doctor that I will look into it before actually filling it and will call if I have any questions. We found that doctors are very comfortable prescribing Levaquin as a first line therapy antibiotic when a less troublesome antibiotic would be a better choice for John. Levaquin impacts the central nervous system and causes tendon ruptures, both of which John has issues with.

I hope you get some answers today. Good luck.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #11  
Old Fri Jan 30, 2015, 09:00 AM
Marlene Marlene is offline
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Just want to add that this drug depletes B6 and possibly zinc....both needed for WBC production. They also support other aspects of the immune system.

http://www.healingwithnutrition.com/...drugs.html#A12
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #12  
Old Fri Jan 30, 2015, 10:06 AM
Rentzi Rentzi is offline
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Marlene,
Levaquin was given to Rory initially and he experienced no problems for almost two months. In December, they gave it to him again for pneumonia and it was a disaster. He had horrible pain in his achiles and his kidneys went haywire! Took a month to get back on track. He is getting labs done this morning and hopefully between Mayo Clinic and his local hematologist they will figure it out.

Melissa
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  #13  
Old Fri Jan 30, 2015, 12:26 PM
Rentzi Rentzi is offline
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So cbc this morning was interesting as well.
wbc 2.3, down from 2.8 yesterday, 3.8 last week.
Anc 1354 up from 244 yesterday, last week- 2454
platelets 72- down from 88 yesterday
Hemoglobin - 11.4, down from 12 yesterday

I understand these variations could be common. Our Dr. at Mayo Clinic thought maybe keep taking the med and check again on Monday or Tuesday, then they will consider changing med. His blood pressure has been high due to the cyclosporine. Surprising jumps in ANC and we don't like to see wbc going down. Have a good weekend.
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  #14  
Old Fri Jan 30, 2015, 01:11 PM
bailie bailie is offline
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What are the bone marrow biopsy results?
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #15  
Old Fri Jan 30, 2015, 04:02 PM
curlygirl curlygirl is offline
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Hopefully it's nothing. Swings are common when you have a virus - even very large swings. If his doctors actually think it could be a reaction to the flu shot (e.g., he got the shot but immune system is too weak to mount a response to it), luckily Tamiflu is able to help fight the flu and maybe you can suggest that he be put on it. My son got the actual flu over Christmas. His doctors immediately put him on Tamiflu since his Aplastic Anemia is actually set off by upper respiratory viruses. He handled the flu much better than expected. We actually haven't checked his blood counts again because he looks better than he did before the he got the flu (we're on a 3 month schedule now.). He got a cold a few weeks later that actually made him look paler than the flu did but he recovered from that, too. I think if you do actually think that the flu virus "got stuck" and is driving down his numbers, Tamiflu would be a good option to try.
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  #16  
Old Fri Jan 30, 2015, 05:40 PM
Marlene Marlene is offline
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Hi Melissa,

Thanks for the update.

For future reference, here's a list of the fluoroquinolone antibiotics for future reference. http://en.wikipedia.org/wiki/Categor...ne_antibiotics

Also, since his high BP is associated with cyclo, many found that they needed to take magnesium while on it since it can deplete it. Magnesium can help lower BP.

Hope you have a quiet weekend.

Marlene
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #17  
Old Sat Jan 31, 2015, 03:04 PM
KMac KMac is offline
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Hi Rentzi,

Certainly don't feel bad you pushed to have that flu shot. I am 3 years post-ATG and opted to have the strongest possible flu shot this year (one called quadrivalent) at my doctor's advice.

Over the holidays my family got the flu, and I got a milder version than they did, so perhaps the shot helped.

And my thinking too is, if the flu shot can cause a drop in counts when recovering from aplastic anemia, then what could a full blown case of the flu cause?

My understanding is in England, Dr. Judith Marsh, who is an renowned aplastic anemia expert there, recommends against flu vaccinations in aplastic anemia patients, based on anecdotal evidence of relapse, as per the articles below.

But despite this, here in the U.S. the standard is to give flu shots in aplastic anemia patients.

At my hospital, I discussed the articles below with them, stated my concerns, but after careful consideration, I decided to do what my hematologist recommended, and got the flu shot (again based on the thinking that I have kids in school, they exposed me to things, and whatever risks a full blown case of the flu might pose, including relapse caused from that flu, seemed worse).

So with a rare disease like this, we are so often left with the experts having contradictory opinions to one another (and I have learned to be at peace with this too, because if scientists disagree, I want to see them each speak up and state their arguments, as this is a big part of how the science advances, and new better treatments arise).

I am glad your husband's ANC went up over 1000. The sort of bounce in counts you are reporting, anecdotally, is so incredibly common to my experience, both my own experience, and talking to other patients. While I was recovering, my ANC dropped from 2800 to 250 between appointments, yet in retrospect this terrifying drop just proved to be a mysterious bump in the road to recovery - the sort of instance I have also heard about from so my other recovering aplastic anemia patients.

==============

http://www.bcshguidelines.com/docume...h_june2010.pdf

"There have been anecdotal reports of vaccination producing
bone marrow failure or triggering relapse of aplastic anaemia,
so vaccinations, including influenza vaccination, should only
be given when absolutely necessary"

http://onlinelibrary.wiley.com/doi/1....379111.x/full

"It is our current practice to advise patients with aplastic anaemia against having influenza vaccination and only to give other vaccinations if medically indicated."
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Kevin, male age 45; dx SAA 02/2012 - Hgb 5.8, platelets 14, ANC 200, 1% cellularity. Received ATG 03/2012. As of 03/2015, significant improvement - Hgb 15, platelets 158, ANC fluctuates around 1000, Lymphocytes 620. Tapering cyclosporine. BMB 20-30% cellularity.
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