GCA symptoms

[ayoung]

Does anyone with GCA have feelings like chest congestion and find it is very hard to lay on your left side at night. It also huts on the right side but not as much. Very scary concerning GCA can cause inflamed arteries and aorta. I have had several scans on my body but not a pet scan on the heart. What do you all think!

[PMRpro Ambassador]

What does your doctor say?

[Devoid]

Hi I had a negative temporal artery biopsy but they felt it was inconclusive so I had a ct pet scan which showed inflammation in aorta and large vessels off , the heart they say is unaffected at present?? But my pain is left sided, chest, neck ,arm and down to abdomen, on steroids and week 3 of methotrexate, still unable to get pain under control!!!

[SnazzyD in reply to Devoid]

Hello. I know that prior to diagnosis with GCA I had at about a year of finding it strangely uncomfortable to lie on my left when I went to bed. Not pain as such but a feeling of congestion in my chest and my ectopic beats I’d had for years got worse on my left. By morning it was gone. I have not had it since Pred. I was convinced they would find large vessel involvement. My PET was negative but I had been on Pred for 3 weeks before it so I still don’t know because Pred affects it. Had you been on Pred prior to the scan?

[Devoid in reply to SnazzyD]

Yes for about 6 weeks but dropping down from 40 to 10 following the biopsy results then I have been back up to 40 and now 35 after 2 weeks and started methotrexate

[SheffieldJane]

I was tested for my Aortic valve function, all clear for me. This symptom needs to be reported to your doctors. Vasculitis can occur in other parts of our body. Good luck! It may just be weird PMR symptoms.

[Blearyeyed]

It would be really helpful if you could give us some more information before we could give you our opinions , as with potential heart , vascular or lung symptoms , it isn't really safe for us to give you advice without this.

Would you mind telling us :

1. When you were diagnosed with GCA , what tests were used, and what medication and dose are you on?

2. As well as feelings of chest congestion and discomfort , what other symptoms are you experiencing at the moment ( all parts of the body not just the chest) ?

3. Are you also having chest pain , if so how strong is it , and when is it worse?

4. Do you suffer from breathlessness and when?

5. Do you suffer from dizziness or palpitations ?

6. Do you have any other medical conditions , or take any other medications these might also cause some of your symptoms?

Hope you are happy to add some more details for us , as obviously , the majority of the members of our forum may have alot of experience or tips to give you ( especially concerning GCA/ PMR ) but are not medically trained , and we would not want to give inappropriate advice on serious health issues that might be incorrect or delay your making the right steps for proper help because we didn't have enough information to advice you appropriately.

Take care x

[ayoung in reply to Blearyeyed]

Dr. Isn’t sure I have GCA

as he tried to give me a biopsy of the vessels and he had to stop as the vessels near my left ear where next to nerves that stopped him.

I am on 71 ml. injections of methotrexate once a week plus folic acid weekly all no with alendrate once a week.

I am breathless when I sit down, get into bed, speak on the phone quite often if I have to really concentrate.

I feel dizzy when I turn in bed or move quickly.

I have chest pain when I first sit down in a chair or I am

Getting into bed. It is enough to make me worry but not dreadful. A bit of palpitations when I sit down and more when I have to listen to jibber, jabber on the phone.

I sometimes have numbness in my lower left leg. It starts at my inside ankle and goes halfway up to my knee.

I have had PMR for 3 years and just got off prednisone a few days ago.

I take naltrexone 3 msg daily

Progesterone daily

Estrosmart 1 every second day

Inate floral adrenal support 1 daily

Magnesium 500 2 daily

Coenzyme Q10 100 1 daily

Vita d3 2000 daily

Fish oil 1300 daily

Calcium 600 msg daily

No flush niacin. 500 nightly

Cipralex 10 mg. Daily

Have taken all of these for at least 4 years

[PMRpro Ambassador in reply to ayoung]

Even if he had done the TAB he still couldnt have said for sure - if you have symptoms of GCA, that is what they should be working on. But all that sounds very complex - if it were me I'd want some investigations asap.

[Blearyeyed in reply to ayoung]

When you say Doctor , have you been sent to a Cardiologist or Rheumatologist ?

[ayoung in reply to Blearyeyed]

Internist

[ayoung in reply to ayoung]

Also part time cardiologist

[Blearyeyed in reply to ayoung]

I think you definitely need to get back to the GP to discuss these current symptoms , discuss whether it may have something to do with your medication, ask if you will be referred for any other tests like PET / Ultrasound for GCA , if you haven't had a EChocardiograph and ECG these would be of benefit and you should have a referral to cardiology, as well as having your blood tests done again , especially inflammatory markers , FBC , Vitamin D and Bs , Magnesium. You may also benefit from Thyroid tests.

You are on progesterone , is that single hormone HRT?

Is this for a particular condition?

Sometimes hormone therapy can increase palpitations and dizziness while also on other medication.

Basically , it's a trip to the Doctors and keeping on at them to fully investigate these symptoms , but if they get worse , you have continued breathlessness and dizziness and are suffering from blurred vision do go to A and E.

Take care and keep us updated on your results.

[ayoung in reply to Blearyeyed]

No the progesterone is just a precaution against female cancer.

[christine2715]

I had GCA in aorta which caused the symptoms you describe and also breathlessness. Also a 'loss of breath'. I sing and suddenly I had no power to sing. See your doctor to check it out.

[gifford7]

It might be aortitis caused by the GCA. see:

vasculitisfoundation.org/is...

"Some of these symptoms include back pain and abdominal pain, fever, chest pain and shortness of breath with heart failure. Other symptoms may include fatigue, arm or leg weakness or pain with use, lightheadedness, dizziness, fainting and headaches. Examination may reveal abnormal heart sounds, abnormalities of blood pressure (both high and low), a difference in blood pressure between both arms, reduced or absent pulse in the wrists and sometimes ankles, and anemia......................................

Diagnosis is usually made with echocardiography, as well as other techniques like dye based angiography, computed tomographic angiography (CTA) and magnetic resonance angiography (MRA) which reveal abnormalities of the aorta (widening, or aneurysms, and stenosis, or narrowing)."