Need Advice

I've had PMR/GCA for 2 1/2 years with a flare last September that was thought to be PMR since the symptoms were stiffness after tapering from 5 to 0. ESR was 28 then. CRP and ESR both fine at 0.6 and 2 after prednisone upped to 20. However a recent MRI indicates new carotid artery occlusion. New bloods were done today and if these are okay, it's my choice whether to up the prednisone to 40 to halt any further occlusions or just monitor the situation. I'm on 7 1/2 now, which isn't enough if there is GCA activity going on. Does anyone have advice?

[Celtic PMRGCAuk volunteer]

jonnypup, I'm wondering if it might be preferable to await the result of the other blood tests before deciding what to do, in case it is something other than GCA causing the carotid artery occlusion, such as raised cholesterol. Have you got any symptoms that might offer clues?

[PMRpro Ambassador]

I think you need more evidence of the reason behind the carotid artery occlusion. Is it definitely inflammation? If it is definitely inflammation you need more pred and will be able to reduce later. If the occlusion is something other than inflammation you will need other measures since pred will only have an effect on inflammation.

[Hidden in reply to PMRpro]

Thank you to both of you! This gives me the right questions to ask. I have a feeling it's inflammation. I don't have any other health issues that I know of. Is it possible for the inflammation markers to be low and still have GCA brewing?

[Celtic PMRGCAuk volunteer in reply to Hidden]

Yes, there are patients who are diagnosed with PMR and/or GCA in spite of having normal blood markers.

A temporal artery biopsy is the usual diagnostic test carried out to determine whether a patient has GCA, but even these are not always reliable as the large cells they are looking for can sometimes escape the tiny portion of artery removed.

A more reliable test is a temporal artery ultrasound but these are only available at a couple of centres at present, namely Bristol and Southend, and possibly Leeds.

[PMRpro Ambassador in reply to Hidden]

Yes - about 1 in 5 patients with both PMR or GCA never have raised blood results for some reason and they can also lag a long way behind any symptoms.

[Hidden in reply to PMRpro]

One other question- can the radiologist tell if the occlusion is inflammation? I've had the same radiologist reading the MRIs each time. The most recent ones were just a few days ago and this is where he identified the additional area of stenosis in the carotid.

[pwpl in reply to Hidden]

I am surprised that ur Dr hasn't suggested heart examin ations. In my amateur opinion I would check for cardiac arterial disease. You may need stenting. The problem with autoimmune and inflammatory diseases is that there is too much overlap into other diseases. Unfortunately Inflammation is insidious affecting your whole body.

[PMRpro Ambassador in reply to Hidden]

They can identify inflammation I think but I thought that ordinary MRI was a bit general otherwise they would use them more - I honestly don't know. However - you can't do a biopsy of the carotid artery without a major operation so I think you have to believe him!

[Hidden in reply to PMRpro]

Where I live, the vascular surgeons use CT scans and the rheumatologists use MRIs for follow up and make sure to have the same radiologist read them each time. The CT scans are interesting because you can see the video of the blood going through your arteries and where it gets reduced to a thread with inflammation and scar tissue.

[PMRpro Ambassador in reply to Hidden]

That sounds like high luxury - what do they do when someone leaves?

[Sha9rons]

I am into 6th day of taking an enzyme 'serrapeptase' which I had seen in a post on polymyalgia and giant cell arteritis. After doing some research on it, I got some and have been taking 2 in early morning before food as this is best for clearing inflammation from arteries. I've also begun taking 2 turmeric capsules with meals, with less leg pain and weakness in last couple days. Hesitantly, I think that these things may be helping and will monitor carefully over the next week to discuss with rheumatologist I'm my first visit (5 months to get in for specialist). I also take 25 mg of prednisone having tapered slowly from 40 mg in January when first diagnosed.

Do some research and try these supplements while you see if they help reduce inflammation. As we see lots of crazy or extreme ideas about supplements and prescription meds, we all must be cautious but I feel some hope for recovery now with what I'm trying.

Take care!