Due to ongoing symptoms of shortness of breath and dizziness, my GP has ordered a pharmacological nuclear stress test. Anybody else have this test or thoughts about it?
Short background- Diagnosed with PV in late 2021; symptoms began shortly after, even when on 81mg aspirin only. Now on Besremi for two years and have CHR for over a year. Previously have addressed iron issues, had neurological evaluation and testing, cardiac evaluation and two-week heart monitor, brain MRI, and much more. These evaluations all returned with excellent results.
At visit with GP he displayed my latest blood results. He said the blood levels are normal, so PV cannot be causing these symptoms. I'm nervous about the test because it elevates heart rate, and side effects can be dizziness, shortness of breath, or chest pain. These effects can be "a side effect or a major complication". Yikes.
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The "Yikes" response is certainly understandable. It is important to get to the bottom of the symptoms of dyspnea and dizziness. There are a couple of factors to be taken into account. One is that these symptoms can occur with PV even when the blood cell numbers are well controlled. The other is that Besremi can have both of these symptoms as side effects. These symptoms can occur for other reasons as well.
It is unlikely that the GP has the treatment of PV in scope of practice. This is really a question for a MPN Specialist to address. It may ne that the pharmacological stress test makes sense, but suggest that you seek an expert opinion of this issue.
Please let us know what you learn and how you get on.
Here is more information about the actual test., which is generally pretty safe and provides a pretty good evaluation [bested only by cardiac catheterization] of blood flow and estimation of areas of ischemia [reduced blood and oxygen flow] in the heart muscle. It is mainly used in patient who for whatever reason couldn't perform a bike or treadmill stress test.
What is a chemical stress test:
"A Lexiscan [a brand name for the chemical used] stress test is a nuclear imaging procedure that uses a medication to increase blood flow to the heart:
Purpose
Determines how well blood flows to the heart and if there is coronary artery disease
A Lexiscan stress test is a nuclear imaging procedure that uses a medication to increase blood flow to the heart:
How it works
A nurse injects Lexiscan into an IV while the patient is monitored. The medication makes the heart respond as if the patient is exercising.
What it shows
The test takes pictures of the heart before and after the injection to show how well blood flows to the heart muscle.
Who it's for
Patients who are unable to exercise or can't exercise for very long
Risks
The test is generally safe, but risks include heart attack, abnormal heart rhythm, fainting, and shortness of breath. Risks are higher for patients with blocked arteries.
Here are some things to know about preparing for a Lexiscan stress test:
Avoid caffeine for at least 8 hours before the test.
Stop taking certain medications at least 24 hours before the test, including TheoDur, Theo24, Theophylline, Aggrenox, Persantine, Slobid Aminophylline, Slobid, Uniphyl, Trental, or Pentoxifylline.
Wear comfortable, loose-fitting clothes and shoes.
Discuss any history of bronchodilator therapy, seizures, or allergic reactions.
Lactating women should pump and discard breast milk for 10 hours after the test.
Thanks PhysAssist, this is a good breakdown for the procedure. The info I've reviewed also says this test is typically safe, but of course this refers to the general population tested, and not specifically PV patients. I'm just unsure if this is procedure is necessary based on previous cardiac evaluations, testing, and imaging I've already had.
When I explained to the GP that top MPN Specialists have documented these symptoms can exist even after CHR due to vasoconstriction and inflammation, he stated they were "grasping at straws". My confidence in his opinion is less after his statement.
"Other major complications include death, cardiac rupture, cerebrovascular accident (CVA), and cardiac asystole (<0.01%). A multicenter, international registry study of 71 centers by Varga et al. found that the risk of life-threatening adverse events in 35,103 total patients undergoing dobutamine stress echocardiography was roughly 1 in every 557 patients (0.18%, 63 total)"
You're totally welcome, and if your cardiologist says you need it, that's one thing, but if Cards thinks you're good already, and it's just the GP driving further testing, I'd be refusing it.
Also, as you say, his or her statements undermining and denigrating MPN specialists' understanding of the disease they are specialists in treating is in itself worrisome.
FWIW, I can echo Planti's experiences, although I had the actual exercise [treadmill] stress test for SOB w/ exertion and early fatigue [not the chemically-induced one], and this was about 5 years before my eventual diagnosis w/ JAK@+ PV and Tx w/ Besremi.
While the exercise was very difficult and taxing, [exhausting] the test results supported the previous tests concurrence that my cardiovascular health was excellent overall.
BTW, my symptoms of sob on exertion and early fatigue [not to mention limb heaviness and generalized pain ] have been mitigated significantly [not to say resolved 100%] since I have been on the INF at what for me seems to be the effective dosage.
Hi Pups, I have Jak2 ET and have been ordered a pharmacological stress test to sort out an abnormal EKG (routine preop no history of heart problems). It is pharmacological because I have breathlessness and need a hip replacement so I can't have the usual exercise stress test.
Something to be reassured about is that you have had good results on cardiac evaluation so it is unlikely that speeding up your heart with drugs will cause major problems. Also they can reverse the drug effect right there. This is a common test for those of us with exercise constraints. I had an appointment with my MPN specialist and we discussed the breathlessness, she had no problem with my having the pharmacological stress test and is keen to get results as I am on interferon (Pegasys).
Never a bad idea to relate symptoms to MPN specialist as they may be caused by either your PV or meds. With the silo effect in place in medicine, it is often up to us to make sure everyone entrusted with our care knows all the goings on.
Thank you Planti. Some of my hesitation comes from a history of terrible reactions to medications. I just find it odd that my cardiologist says my heart is in excellent health and can clearly explain the mechanisms of PV that cause these symptoms, yet my GP denies this possibility.
Best wishes to you, and please let us know how your test goes.
This is an update on my stress test results and experience.
First, the stress test results came back normal. Despite this, it was a terrible experience.
During the test when the medication was injected to elevate my heartrate, I felt fine. I could barely notice an elevated breathing rate, and felt just a little warm. Initial heart rate was 63, highest 93. BP initial was 135/85, highest 144/75. I had no shortness of breath or dizziness.
I was then given a coffee, bottle of water, and meal ticket for cafeteria and told to drink these and get something to eat before returning for final scan 45 minutes later. I sat on bench in hospital drinking my coffee for about 5 minutes when I began to get dizzy, shaky, and started having shortness of breath. I was sweating and went outside for fresh air. I walked about about 100 yards and had to sit down on a bench as symptoms became much worse. I sat slumped over with my head held in my hands, shaking so badly I had to hold my water bottle with both hands. My vision was blurry and I was nauseous and very weak.
I remained there for 15 minutes, then was able to stumble back into the hospital. Remembering that I was directed to eat, I entered the nearby cafeteria but could not stand long enough to wait in line and instead grabbed an energy bar. At the cashier, I handed them the meal card and stuttered as I tried to explain I did not want change from the $6.50 meal card and just needed to leave. I somehow managed to stumble back to the imaging waiting area where I sat shaking for another 10 minutes until they opened the door to call me back.
Immediately the tech noticed my condition and asked if I was alright. I said no, and with difficulty talking explained my symptoms. He had me sit down and called the nurse who had administered the stress test. I explained I had PV and sometimes experienced these symptoms, but not to this extreme. They wheeled me into cardiovascular recovery and put me in a bed for 30 minutes until I stopped shaking and could breath and talk again. After ensuring I was feeling (slightly) better, they wheeled me to the scan room and finished the final test.
As stated earlier, this test was ordered by my general practitioner after my cardiologist said my heart was fine and there would be no benefit to a stress test. When I explained my experience to my GP, he said "These symptoms go far beyond what would be expected for someone with stable labs and a normal stress test. Please take this up with (my MPN specialist name)."
Have any of your Drs discussed dysautonomia? This can be a vague set of symptoms of malfunction to the autonomic nervous system which is what controls the heart, breathing, GI and other things we don't usually think about including possibly what you describe. There are tests specific for dysautonomia. Mine were ordered by my neurologist but it was done in the cardio dept.
Dysautonomia can be associated with autoimmune conditions and other things so it's worth discussing with Dr.
I have never heard of dysautonomia or discussed with doctors. I just read Cleveland Clinic info on this disorder and I do have many of the symptoms, especially related to blood pressure such as lightheadedness and SOB that become worse immediately if I bend or crouch.
Last year my neurologist did DX me with a balance disorder which he doesn't think is a skeletal issue. He couldn't point to an exact cause, but said perhaps it's PV related and of course PV is an autoimmune disorder also. I will see if he will pursue testing for this.
PV is not a classical autoimmune (A-I) although it and most diseases are deeply connected to the immune system. A-I is where our antibodies get mis-programmed to attack perfectly good body parts instead of virus/bacterial/fungal/foreign... infected cells. These can include the nervous system.
This search term will bring up a large set of A-I's that can involve Dysautonomia:
"which autoimmunes involve dysautonomia?"
A tilt table test is a basic procedure your should inquire on, you have the sort of symptoms a tilt table is intended to uncover. Here is an example of a blood test set directed to A-I dysautonomia, but there is much more.
Finding which Dr will help you in this Dx can be difficult, as there few experienced in this obscure but common area.
I watch the forum for any members at possible risk for new or increased autoimmune, esp while on IFN. You can see my posts "Last Dose" why I don't want others to have this risk. Sjogren's is a particular one to watch for. But even if you do have dysautonomia it need not be of an A-I sort.
I will ask doctors about the tilt table and blood test set and continue to research this. Hopefully I'll find a specialist that has the knowledge to DX dysautonomia, whether A-I related or not. It's worth investigating all potentials, as even my MPN doctor doesn't know why I still have these symptoms when I have controlled counts with Besremi.
I remember your Last Dose post and always read your updates. Thank you for sharing your unfortunate experience to help inform others.
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Chest pains & hypertension due to Interferon or Hydrea?
are my numbers high
Hydroxyurea or not?
How did you find out that you had PV?
Cardiac micro vascular dysfunction/Vasospasm
