GCA Heart Issues

[Moaningxcat]

Hi, I was hospitalized with severe pain on my right side temporal artery and diagnosed with GCA. I am currently taking 50 mg prednisone and will taper to 40 on Monday. My pain is gone, but I am so fatigued and have an unproductive cough. My chest burns and a feeling of heaviness. I see the vascular surgeon Monday for a follow up. Could this chest cough be the result of aortic inflammation or bronchial inflammation. If so, shouldn’t the prednisone be relieving these symptoms?

Any thoughts/suggestions will be appreciated. Thank you!

[kalgoorlie]

Hi,I had a non productive cough for a few weeks after being diagnosed with GCA in February this year, and while on a high dose of pred. I believe it is a known symptom. It was particularly bothersome at night as it made me a bit breathless so I slept with my head raised.

Others will be slong with their comments shortly!

[Moaningxcat in reply to kalgoorlie]

Thanks for your reply. I also sleep with my head raised. Hopefully, my cough will resolve in a few weeks too!

[Moaningxcat in reply to kalgoorlie]

I’m also taking Atovaquone which is used to prevent or treat pneumocystis pneumonia. No one mentioned this possibility to me…. Maybe I have a lung infection. Who knows?

[SnazzyD]

I had a silly dry cough before Pred with GCA. I went eventually but I can’t remember when too many other symptoms to notice!

[PMRpro Ambassador]

Even pred takes time to work - patience. A cough is a common symptom of GCA, and the fatigue is typical of most autoimmune disorders. The pred has cured nothing, the underlying autoimmune disorder is still there producing inflammation but the pred is mopping it up. The real disease is still there attacking your body - and can make you feel as if you have flu.

The fatigue is not really something that medication can sort out. It is something for pacing and resting appropriately, lifestyle adjustments.

DorsetLady will be along with her introductory post which has several links in it. One is about fatigue and its management so do read it and all the links in it.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

As mentioned by PMRpro, please see this post for more info -

healthunlocked.com/pmrgcauk...

Have to say I never had a cough with my GCA so cannot help on that… hopefully you will soon get answers .. but have to say I’m a bit concerned about the fatigue.

[Moaningxcat in reply to DorsetLady]

Thank you for the information and support.

[DorsetLady PMRGCAuk volunteer]

How long have you been diagnosed? .. and how long on 50mg?

[Moaningxcat in reply to DorsetLady]

I was diagnosed during a 4 night hospital stay being discharged on April 20. I was taking 60 mg prednisone until 4/22, now taking 50 thru 4/28, 40 thru 5/3, 35 thru 5/10, and 30 until I follow up with rheumatologist.

[DorsetLady PMRGCAuk volunteer in reply to Moaningxcat]

That’s quite a quick taper regime to date … so I would suggest that although your pain may be gone, the underlying GCA is still creating the fatigue you are struggling with.

You really need to be on the starting dose for longer than you were - it looks as if you were on it less than a week - really needs to be 3 to 4 weeks, most certainly 2 weeks.

And whilst you can taper more quickly on the higher doses of GCA, you still need to be sure that the current dose is sufficient before you reduce it … and it can take at least 2 weeks for the body to realise that.

[Moaningxcat in reply to DorsetLady]

This is the schedule the rheumatologist prescribed when I was discharged from the hospital. I do not have a follow up appointment with them. The discharge papers said they will call me for an appointment. If the pain worsens, I will call them.

[DorsetLady PMRGCAuk volunteer in reply to Moaningxcat]

Yes I fully understand it was the tapering plan you were given, but too often we hear from patients it’s too quick.

Not laying any blame at your feet… but from personal experience as well as other stories just saying it’s too fast.

As you have appointment with specialist please do explain the issues you have… otherwise they assume all okay. .. and let us know the outcome of that appointment.

[Moaningxcat in reply to DorsetLady]

Thank you for the wise words!

[Frewen1 in reply to Moaningxcat]

Surprised with such a quick taper and serious condition, that no Rheumatologist’s follow up is in place? I saw mine every two months, then 4, now back to two… but always felt monitored?

[Frewen1 in reply to Frewen1]

… and good luck, yes!

[SheffieldJane]

I had a lot of tests at your early stage of GCA. Such as ultrasound. Vascular, whole body and head MRIs Chest X Ray, CT Scan. My Rheumatologist was keen to rule out other conditions. I had an Aortic Scan as well. I assume that after some more investigations you will know more. I wouldn’t want to taper until my symptoms were properly settled. I had what felt like oxygen starvation initially which I found distressing. I slept propped up and bought my own oxygen measure which told me that I was not actually low on oxygen. Good luck!

[Moaningxcat in reply to SheffieldJane]

Thanks for sharing your medical care. I like the oxygen measure to assure yourself you are ok. It’s very easy to stress with these symptoms and what’s going on!

[SheffieldJane in reply to Moaningxcat]

It is easy to stress with so many unfamiliar symptoms from the drugs and the condition. I go to my state of the art Optician who monitors all aspects of my eye health very 6 months and keeps a record.

[Miacaro45 in reply to SheffieldJane]

As soon as I was diagnosed with GCA, my primary suggested that I find a neuro- ophthalmologist. While a “ regular “ ophthalmologist is ok, most are not savvy when it comes to GCA.

[PMRpro Ambassador in reply to Miacaro45]

Unlikely to be an option in the UK!

[Miacaro45 in reply to PMRpro]

😢

[DorsetLady PMRGCAuk volunteer in reply to Miacaro45]

While a “ regular “ ophthalmologist is ok, most are not savvy when it comes to GCA.

Those I have come across certainly are - and more savvy than the Rheumatologists..

Maybe the difference between UK and US..

[Miacaro45 in reply to DorsetLady]

It is very obvious that the UK seems to be more knowledgeable and savvy about GCA and PMR than here in the US.

[Moaningxcat in reply to DorsetLady]

Good to know. At some point, I will try to find an ophthalmologist who is GCA savvy…

[Menno1525]

If you have been in hospital for a few days it's entirely possible you may have picked up one or other of the bugs that is doing the rounds. It's always tempting to attribute every new thing to the Pred or to the condition, but other ailments are available! I caught something earlier this year that resulted in an unproductive cough and a lung infection that took 3 rounds of antibiotics and about three months to clear properly ( may well have been Covid though all my home tests were negative). At the higher doses of Pred you will be immunosupressed and so more likely to pick infections up and to take longer to throw them off unfortunately. Good you are having a follow up which might help clarify things. Meantime lots of rest, fluids and I found using a steam inhaler with a few specks of menthol grains made me more comfortable snd there are huff breathing techniques you can find on line which, with the inhalation, can help break up thick mucus and make it easier to cough up. And yes a pulse oximeter and a thermometer are great tools for reassuring you or providing a warning if things are getting more problematic - oxygen Sat figures above 95% are fine , low 90's regularly, worth mentioning to your GP, anything below that A&E pdq.

[Chrisellie]

Maybe some large vessels involved. Aorta ?

I had a similar feeling in my chest before being diagnosed with GCA, LVV of rising aorta and PMR

[Moaningxcat in reply to Chrisellie]

I have an appointment with a vascular surgeon tomorrow, who performed the temporal artery biopsy, and I plan on asking him about my aorta. Thanks.

[potterylady]

I had a cough for at least a year with GCA. I don't know if it was due to the GCA or the steroids. It comes and goes but I don't worry about it anymore. I agree with Dorset Lady that the doctors tell us to taper TOO quickly! I would slow it down. You are lucky you have found this group. I couldn't have dealt with this without them. So supportive and more informative than many doctors. You will have to adjust to a new life with this disease. It takes a long time to believe that it's really happening. Go easy on yourself please! Anxiety with the disease and treatment plus being in hospital is exhausting.