Scary situation for sure! Try cutting your salt and ask for a 24 hour monitor for that pounding. I recognize that fear having had it myself when my children were young. I also recently had that breathing thing that went away when I cut down on my beta blocker. The Dr looked at me like I was nuts. I went to him for the breathing, he ordered a treadmill test, I passed it, he was happy, tried to negate my shortness of breath, so I cut the beta blocker in 2. My blood pressure is a little higher but I can breathe! Lots of stuff can cause shortness of breath besides the worst thing. I always say, have hope! This can get better! But I hope you can get into the pulmonary Dr sooner so you can find out what is happening. Can you call the office and ask for an appointment if someone cancels theirs? Sometimes that works! Glad to have you with us but sorry for the reason.
Mary Ann

Agree with MT, I also had shortness of breath with beta blockers, basically couldn't do anything. If you are taking any kind of blood pressure meds, my money is on that. Or some other med. What else are you on besides the synthroid and prednisone?

But that is crazy that you cannot see a lung guy. With ankle swelling and shortness of breath, I think they'd want to rule out some kind of embolism. It would be unlikely, but I've had two DVTs, and there is some kind of capillary thing that happens in MCTD that no one has ever figured out. If you're really getting dizzy and unsteady on your feet, don't hesitate, go to the ER.

I am an MFT, and I absolutely do not diagnose people on bulletin boards. But what you are describing does not sound like anxiety or panic attack, particularly if it happens when you stand up suddenly. You may have anxiety that makes the symptoms worse, sure, or the prednisone could make anxiety worse, but when people describe anxiety and panic attacks, they don't describe them the way that you just did. Possible, but unlikely, IMHO.

Hang in there. Welcome to the group!

--Cat

Thank you for your replies. One night laying in bed I tried to take a deep breath and at the end of it I felt a little rattle/vibration. I didn't recognize that as a symptom of PF or PAH, so I went to see my GP.

Fighting tears, I filled him in on everything that has happened since he saw me last year, including my current breathing concerns. He was so compassionate. He asked for more details of symptoms and then said, "Why don't we get going on some lung tests now." It felt like a huge weight had been lifted.

He said my ankles seemed normal and definitely not what he sees in heart/lung distress. He said swelling that happens as the day goes on is normal, but to call if I notice it in morning.

He did think it is possible that there is an allergy component and prescribed Flonase and then an x-ray of my lungs (which is clear). At some point I mentioned that I was praying this was all anxiety, even though I didn't feel that it is. He said if I wanted we could give Xanax a try just in case.

I started taking Flonase daily & Xanax at night. At first there were no changes other than falling asleep easily. At day 5, I noticed that I got my first half deep breath. By the end of last week it was happening more often and more fully. I don't need the Xanax now to sleep through night. I'm still out of breath too easily, and lungs feel off, but am grateful to have some relief until April.

Right now I am on Flonase, Alleve occasionally, and synthroid. I'm supposed to be taking prednisone 4mg and Plaquinel. After my MCTD dr got so upset when I told him I didn't take the Plaquinel he'd prescribed, I didn't dare tell him I'd weaned myself off the prednisone after taking it for a month.

Am I doing damage by not being on the prednisone? My rheumatologist times it so that the Plaquinel starts working as the prednisone is stopped or reduced to an extremely low dose. I really don't want to be on either drug, but I will gladly choose longevity over that desire.

Thanks, Jules

with the autoimmune issues you should really be on the plaquenil, it is an old and well studied drug with only a few side effects, but it does wonders for MCTD. It's takes 6-8 weeks before you would feel any improvement.

Dear Julie,
I am very sorry for what you go through at the moment and I do hope that things get better for you soon.
To add, what all the others have already said, I want to mention that Plaquenil has changed owners and the new owners have changed the coating of Plaquenil to save money and as an SLE/MCTD sufferer I am unfortunately allergic to the new (artificial) coating of Plaquenil and because of that I cannot take it as madicine any longer...
... I do hope we hear soon from you that you are on your way of recovery !!!
Best wishes and all the best from Kristina.

My advise is to stay on the plaquenil and prednisone (hate prednisone). These are the best defense against this disease.
Once the plaquenil takes effect you should feel better.
Hope you are feeling better soon.