Wondering if anyone else has experienced this possible start to GCA?

[WelshSmallholder]

I have not posted on here for a long time as things have proceeded fairly uneventfully:

- Onset of PMR two and a half years ago

- Diagnosed and pred started two years ago

- Steady reduction of pred, in last nine months using DSNS down to 3.5/3mg

- Normal ups and downs, neck, shoulder, upper body muscles mainly

Then:

- Cough coming or going over last couple of months, intensifying in last two weeks

- Non-stop headache started ten days ago

- Heavy night sweats

- Bouts of shivering and shaking

After a bit of toing and froing with the doctor they did blood tests. Markers came back ESR 100, CRP 130 (ironically when monitored early in PMR they had never been greater than 31 and 4 respectively)

Doctor said must manage as GCA even though “classical” symptoms not present. On to 60mg pred and he would consult rheumatologist

Later he reported on a phone conversation with rheumatologist, who said:

- In the absence of classic GCA symptoms (scalp tenderness/vision issues/jaw - claudication) He thought a diagnosis of GCA was unlikely.

- He said onset of GCA was unusual in someone taking any dose of steroids (!!??)

- He said the doctor should continue to investigate other possible causes of the inflammation

- In the meantime a dose of 40mg pred should be enough

Some of which is fair enough and some of which seems a bit bizarre.

I would be grateful of people’s thoughts on this scenario - examples of PMR to GCA following similar patterns? It will help me prepare for next encounter with GP. Many thanks

[fmkkm]

Hi there,I did have non stop headaches, also constantly cold and shivering. 40 mg is what I started on so hopefully that will be enough. I think with that high of a sedrate the prednisone is justified.

There are several people who have been diagnosed with GCA while on a lower dose of Prednisone for PMR.

[WelshSmallholder in reply to fmkkm]

Thanks for that!

[DorsetLady PMRGCAuk volunteer]

Not sure I agree with Rheumy on most counts - the symptoms you describe may not be the “classic” ones usually described for GCA, but what you have are certainly amongst those mentioned in studies…as for GCA being unusual when on steroids at PMR doses! Happens all too often….he must live in cloud cuckoo land.

40mg should be enough provided you have no sight anomalies - if you do, then a higher dose as suggested by GP is required.

But the v. high inflammation markers maybe do need further investigation.

[WelshSmallholder in reply to DorsetLady]

Thanks DorsetLady - that all makes sense

[winfong]

I have exactly what you describe. Personally, I refer to it as non-temporal GCA, or primary LVV. I doubt you'll find much Googling those though.

[WelshSmallholder in reply to winfong]

Thanks for that. And how do manage that situationn for yourself drugs wise?

[winfong in reply to WelshSmallholder]

Pred and Actemra (tocilizumab). A little less than a year for the pred and probably 6 months for the Actemra. Actually doing pretty good. Down to 5.5 on the pred (60 originally). Aches and pains are not too bad (knock on wood). Fatigue, brain fog, PEM, etc. still pretty annoying.

[WelshSmallholder in reply to winfong]

Thanks

[Grammy80]

I'm a GCAer and I agree with you and Dorset Lady...100%. I'd say you have enough on the checklist to be really vigilant. My best to you..💖.

[WelshSmallholder in reply to Grammy80]

Thanks Grammy80

[gamechanger_tobesure]

I do not have PMR. However, in September 2019 while we were caravan travelling I began to experience a sense of pressure in my sinus' and assumed it was was sinus from severe bushfires in the vicinity of our journey over an expansive distance and started self-medicating. Prior to leaving for our holiday, I had been experiencing irritability, some weight loss, occasional night sweats, light headedness, fatigue, all of which I explained away to other reasons. Life had been very stressful.

After a couple of weeks of the 'sinus issues', I began experiencing intermittent headaches ranging from my forehead, to the base of my skull to the top of my skull, etc. They were sometimes severe and at other times just annoying. Again, I associated it with sinus and stress from the constant smoke in the air. I made a few doctor's appointments and then cancelled as the symptoms had receded enough to not warrant seeing a doctor. Then I developed discomfort in my temples and after a few days very severe right temple pain at night. It would settle to a low level discomfort when I got up in the morning and started moving for the day. I intended checking all this out when we returned home. After a few days it was time to turn the car towards home. We were travelling away from major health centres and something urged me to get checked before we left. At the local hospital in a regional NSW town, I attended the A&E department. The registrar on duty took my description and immediately started me on 50mgs Prednisolone and then did a blood test which returned with high inflammatory markers. He had me into surgery that evening to have a Temporal Artery biopsy. He referred me to an Ophthalmologist the following day who checked out my eyes and at that point there was no problems. By the time we arrived home the biopsy had returned a positive result. I was extremely lucky to be seen by a young doctor who was absolutely on the ball. My point in telling you this is that I had no other symptoms other than the temple pain. I had had scalp tenderness in the past but always assumed it was on of those mysteries ....... it always seemed to only last a day or so and just seemed to disappear. It wasn't present when I had the temple pain. I consider myself so unbelievably blessed when I read so many other experiences on this site. I am hesitant to even share how lucky I've been as feel I am not being sensitive to the struggle so many others have. I wish you every blessing with your journey and hope your next appointment is reassuring.

[WelshSmallholder in reply to gamechanger_tobesure]

Thanks for your story. Real life is never as simple as the list of bullet point symptoms in the "official" literature uis it?

[gamechanger_tobesure in reply to WelshSmallholder]

That's for sure! If there's one bit of wisdom I've gained over the years it's that life is far more grey than black and white!!😉 Go well.

[Celticrival]

have you had the two covid vaccines if so did the headaches start after them? I have had a similar situation though was completely off the steroids when this all flared up, second astra zeneca and headaches started, my esr went to 63 and crp to 20 so they put me on 20mg of steriods as a precaution. Still got headaches but find that ibruprofen help so don't think it is gca, starting to go down on the steriods now so will see how things progress.

[Waves2]

Hello, your description almost exactly matches my own experience from PMR to GCA apart from the cough. I had reduced to 3mg and was put up to 40mg but felt so unwell at the high dose that I was allowed to reduce to 30mg after 2 weeks. I have since come down very slowly to 10mg which I have accepted is my limit for now. My scalp is my great warning bell..as soon as I overdo things or life throws too much at me it will let me know. I found the first few months with GCA quite hard. All that time reducing and seemingly nearly at the end of the PMR road and then bang, start again. It takes a bit of adjustment to say the least.Also, do take extra care with your eyes-sunglasses and regular eye checks a must.

Good luck.

[WelshSmallholder in reply to Waves2]

Thanks for that. When you say scalp being a warning bell do you mean headaches or sensitivity? Good point about the eye care, I am due for a two year review in the Autumn but might try to bring it forward.

[Waves2 in reply to WelshSmallholder]

Tender/sore scalp is an early warning alarm for me to rest more and do less. This and headaches occur more frequently in the days following pred reduction.

[Rugger]

I was diagnosed with PMR in May 2016 and after several flares / relapses, I was diagnosed with GCA-LVV in November 2019. At the time I was on 6 / 7mg of pred, so the rheumatologist must accept that I am "unusual" to develop GCA while on pred!

The Symptoms leaflet published by PMRGCAuk states that 1 in 20 people on treatment for PMR develop GCA. The leaflet also lists your symptoms as some of the signs of GCA.

pmrgca.org.uk/wp-content/up...

It sounds as if you are in good hands with a GP who is communicating well with you.

All the best.

[WelshSmallholder in reply to Rugger]

Thanks for that Rugger

[DRunnerchick]

I don’t have GCA, but am under surveillance for it with symptoms but was told “it was highly unlikely”….

But, as a physician friend, the awesome Dr. J. Rutland says- “Disease doesn’t read. Nor do they follow guidelines.” He is constantly annoyed that patient’s quality of life is sacrificed on the alter of guidelines, either for the sake of insurance or because a patient’s illness doesn’t neatly check all 5 boxes, only 4.. So, they are denied treatment and potentially prevention of life altering consequences.

Keep vigilant. Trust your gut and if you think you need immediate care, make waves to get it! All the best my friend.

D🏃🏽‍♀️

[WelshSmallholder in reply to DRunnerchick]

Thanks!

[Frenchduck]

I was diagnosed with GCA in April 2020. The cough was one of my worst symptoms and I had it for 3 months. I couldn't speak without coughing. I was treated for pneumonia with antibiotics only to find later that I had never had pneumonia and the lungs were seen to be perfect. Within 3 hours of taking the prednisone the cough had disappeared. Apparently it was caused by the inflamed aorta putting pressure on the lungs. I had the other symptoms you mentioned but not the headaches. Your symptoms are classic enough in my opinion.

[WelshSmallholder]

Ah, that';s interesting about the cough - and it's cause. My lungs show up fine and clear on both X-Ray and examination. Also coughs now quickly gone once pred started.