I last updated about my new dx of POTS. Since I seem to be a “difficult” case, my cardiologist wants to do a heart cath this Friday. I have not had any chest pain but the shortness of breath is adversely affecting daily. I have had all the pulmonary tests, CT’s and functional tests. I have the lungs of a horse! lol!
I am so flipping tired and today I seem inordinately emotional. I cannot concentrate and I just want to sleep! Argh!
I know that I have severe cardiac calcification. By severe means over 2/3 of my cardiac vascular system has calcifications, as I understand it. I honestly believe that it may be causing the SOB. But my cardiologist has not said that. Has anyone here had experience with this severity of cardiac calcification?
Thanks so much and I truly hope you have a wonderful day!
Kim
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Wewo01
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While I have no experience with cardiac calcification, I have had a cardiac Catheterization, an ablation for atrial tachycardia. I was awake for most of it. They positioned the monitor so I could watch what was happening during the procedure. While not everyone's cup of tea, I thought it was fascinating. The surgery went well for me and the tachycardia was greatly reduced.
I would expect that the cardiac issues are a part of your overall symptom profile. Certainly these issues in the context of a MPN are concerning. There are different ways to look at complex cases like ours. "Difficult" is one way to look at it. I prefer "interesting" and have had many "interesting health learning opportunities." This lead to my setting the goal to be "The World's Most Boring Patient." My GP thinks that is hilarious. My Integrative Medicine doc said "The ship has already sailed on that goal." Oh well! I will just have to keep working on be9ing more medically boring.
Wishing you all the best and success with the catheterization/ Please do let us know what you learn and how you get on.
The finding "over 2/3 of my cardiac vascular system has calcifications" leaves room for more info. While most your arteries have some, how much % is actually blocked? (For example only) maybe it's a range 5-25%. This could be why your Cardio is not suggesting urgency. Has Dr discussed the details?
"Severe" does suggest the higher blockages. But the Dr needs to discuss with you for a most accurate interpretation. I understand Dr has seen but not told you anything.
" I cannot concentrate and I just want to sleep!" is a too-common Sjo thing as are the other troubles you describe. In some manner, it being a heart thing could be a + since there are known fixes for that.
I've been fairly functional recently, I think the TCM (Traditional Chinese Med) herbs are helping. It's been 6 months seeking a right formula. I've been resisting the afternoon nap as I feel more wasted afterward. In MPN getting active often helps the fatigue, Sjo it helps some, but it's not the same.
More classic Sjo Sx unfortunately. Fatigue is #1 complaint for most Sjo pts. I visited a rare Sjo expert recently, she said my unusual path to Sjo (vax+ IFN) provide a possibility of self limiting Sjo, meaning it could go away. Would be nice and for both of is this is something to put calm thoughts in our heads.
It seems IFN Sjo might be faster onset than "regular" Sjo if our example applies. I call mine "instant Sjo".
Hoping your cath goes well and you can feel better.
I'm at close to two weeks of days worth having. Greatly lowers my Hubby's stress too. Not since last Aug such a stretch of decency. Hoping this doesn't jinx it. Mornings are still harsh, seems typical from a thread on the Sjo forum.
On the heart calcium, I got tested last year, had zero. I had PLT over a million at Dx. Just another example of variations among us in these things. I did have multiple TIA's in retrospect before treatment.
Knocking on wood for continued good days! I used to be an early riser but that is no longer! I struggle in the mornings to get going. I have to be at the hospital tomorrow morning at 6:30 for my cath. It’s a 30 minute drive, so it’s going to be rough!
I have severe calcifications of the LAD main artery and diagonal I had a stress test and scan at same time to see the amount of blood flow they just put me on 80 mg statin Apixiban and Aspirin and propanol
I had to have tests privately as my GP referral wasn’t classed as urgent and there’s a 53 week waiting list crazy as I had chest pains for months
I was already on Amlodipine and Irbesarten for blood pressure
Phil1955, I am having a nuclear stress test next week. It has been 6-1/2 years since my heart attack where they found I had a 50% blockage in my LAD. Subsequently, my platelets were at a million and a month later referred to a hematologist and diagnosed with ET/Jak2+. I have been experiencing some angina and Dr figured it was time to check out the blockage:/ I have been on Atorvastatin and Metoprolol since late 2017. We will see if it has slowed the growth of the artherosclerosis. I am wondering if the inflammation we experience from MPN’s contributes to the calcifications??
My MPN specialist seems to think that our MPN’s definitely contribute to cardiac blockages because of the inflammatory response our body produces from our MPN.
I was recently diagnosed with severe cardiac calcification. This was about 9 years after being diagnosed with PV. After doing some research, I came across this article:
In a nutshell, having a higher jak2 allele burden (above 50%) is correlated directly with having severe coronary artery calcification. One hypothesis I have heard is that the constant, steady, high-inflammatory state that our bodies are in with MPNs directly contributes to the coronary artery disease, which shows up much earlier, and much more severe than would normally be expected.
When I had my Cardiac Calcium Score CT done, my score was 620. Anything over 400 puts you in the "severe risk for a heart attack in the next 10 years" category. I then had a Cardiac Catheterization to see just how bad things were. Turns out my right coronary artery was 50% blocked, the circumflex was 60% blocked, and the LAD (the widow maker) had 3 separate blockages, the worst of which was 70%. That one got a stent that day. Now we are just watching and waiting to see how things progress.
Funny thing about it- I didn't have any regular chest pains, just a small amount of pain during extreme exertion. Never in a million years did I think I had heart disease. It's something we all need to be aware of.
I would be very careful about these tests and calcification....I was jokingly informed these occur on the outside of the arteries and have no bearing on the inside....My test was very bad but the cardiologist did an angiogram and revealed all ok....if you are concerned an angiogram is the best test...if their is a problem they will stent you in the same procedure
I had a heart cath on Friday. No new CAD. I get concerned about the calcification because it stiffens the vessels and the heart making it harder to pump.
So relieved! I have been on Repatha for 3 months. My LDL is down to 30! It was never sky high but I wanted to stop the continuation of calcification.
I saw a neurologist, today. I have been struggling more and more with fatigue and myalgic encephalopathy. So, she is going to try Ritalin on me. I’m willing to try most anything.
LDL like that should do the trick. I would guess we need some LDL for balanced functions.
Do you mean "Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)" or "encephalopathy"? I can't find encephalopathy combined with "myalgic".
In either case all this is well within the Sjo spectrum. A quick search for example:
"Encephalopathy as unique manifestation of Sjogren’s syndrome: expanding the spectrum of steroid-responsive encephalopathy" (I've not read this thru but it suggests this particular is treatable)
If it's ME/CFS, that is center stage in the Sjo show.
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On "Trying anything", best to focus on what's known to work for Sjo. A neuro is a good part of a Sjo team, but a Rheum that has a clue is a priority. This Dr can discuss current standard treatments:
HCQ (Plaquenil). This is the low hanging fruit, a mild agent that helps many Sjogies with ME/CFS. I'm totally intolerant, (tinnitus). It requires ~6 months to start working.
Leflunomide (Lef) Combined with HCQ it can reverse Sjo symptoms. I'm totally intolerant (anxiety)
LDN (Low dose naltrexone) Helps general Sjo symptoms. I'm totally intolerant to even a pinch of its dust. (worsens my Sx)
My intolerance to all three of these is not normal.
RTX (Rituxan) B cell depleter. This is strong suppressive med, and if one is on Rux it's a problem. Drs usually wait till we're fairly far gone to try this, but it's gives nice relief for many esp if taken before too far gone.
There are misc others that a good neuro or Rhuem can suggest.
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Much better drugs are coming, several in phase 3 trials, but not here yet.
I meant encephalomyelitis and chronic fatigue syndrome. Oops!
As far as my LDL, I don’t know whether to just eat more bacon 🥓, 🍳 and 🧀 or see if my Dr wants to back off on the Repatha! I’m kidding! I actually skipped my Repatha on Saturday and will talk to Dr soon about it. I read you should not go below 20 on LDL.
I so appreciate your input! I definitely need to get to a rheumatologist, soon. If plaquenil can be effective for my symptoms, I need to prioritize that. I was on it 7 years ago when I was diagnosed with Rheumatoid arthritis but then in turned out I had an MPN and not rheumatoid. 🤷🏻♀️
RA has some good treatments beyond HCQ, but doesn't help here. If you do start HCQ you should have an eye exam specifically for HCQ, after long use (usually 10+ years) it can cause retinal damage. It gives well defined warnings which is a good thing. Supposedly HCQ may reduce progression. But few Sjogies should require HCQ by then, with so many better targeted Tx coming.
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Statins
Anyone had a cardiac event monitor?
Overdue Update
Worried about this info
ADMITTED TO HOSPITAL ON GOOD FRIDAY
