Biopsy confirms Temporal Arteritis

[chanel2]

Had biopsy performed on Tuesday, August 14th and appointment with Rheumatologist Thursday, August 16th. She increase my prednisone dosage of 40mg that gp had me on to 60mg for 3 weeks until my next visit with her. She is the one who will be treating me for GCA. I was able to ask her a lot of questions that fortunately I learned from this forum. So thankful everyone shares their journey with this disease and are so helpful to newly diagnosed patients. I will keep updating as I go through this.

[PMRpro Ambassador]

Sounding good. No-one wants GCA - but if you have to have it, getting a positive biopsy is very very useful for the future! No-one can argue with that.

All the best!

[granny-b in reply to PMRpro]

Totally agree. The positive biopsy has meant that no one has ever queried my diagnosis. I was lucky because my symptoms weren't comprehensive, headache, jaw claudication and bloods.

[chanel2 in reply to PMRpro]

Yes, good to have confirmation but I knew I had it before biopsy. thank you for the good wishes and best to you.

[PMRpro Ambassador in reply to chanel2]

YOU may have known it and your current rheumy may have been pretty sure as he saw you in the flesh. But there are plenty of patients whose original rheumy has ridden into the sunset for whatever reason and then the new one says "It was never GCA..." When you have a positive biopsy on your notes - no-one will be able to argue with that.

[chanel2 in reply to PMRpro]

thank you

[DorsetLady PMRGCAuk volunteer]

Good luck.

Been there, done it, got the TShirt, survived it!

In remission almost 2 years.

[chanel2 in reply to DorsetLady]

thank you

[SheffieldJane]

Well at least you know where you stand now and it was caught before too much damage was done. Thankfully this disease is finite, so you will get better. Looking forward to sharing your journey there.

[chanel2 in reply to SheffieldJane]

Thank you for your kind words. This is such a wonderful forum.

[enan-illuc]

Chanel2,

Often getting diagnosed is the most difficult part of GCA. Like SheffieldJane said 'at least you know where you stand now". With GCA we now have more options like Tocilizumab/Actemra, and you will get through this. I also have GCA and PMR and would strongly advise you to pace yourself to conserve energy and don't worry about the 'little stuff'. I hope this helps.

Enan

[chanel2 in reply to enan-illuc]

Thank you for your response and advice. I am learning each day about this and can use all the help I can get.

[SnazzyD]

Ok, you don’t want to told you have GCA but at least you know all this madness is worth it.

[Marijo1951]

I was diagnosed on 31st July 2017 and had my biopsy the day after. It definitely confirmed the diagnosis so, although it was a very unpleasant procedure, I've always been glad to have it done as nobody can throw doubt on the diagnosis.

[chanel2 in reply to Marijo1951]

Yes, that is so true. So where are you now in this process. About a year ago you diagnosed so wondering what has happened in a year where I am just starting.

[Marijo1951 in reply to chanel2]

I still feel much as I did a year ago, although as my pred decreases the side effects have lessened, so I'm no longer ravenously hungry all the time and the insomnia has also improved. The pred suppresses the pain, so I am virtually painfree, but it does nothing for the overwhelming fatigue and the general feeling of unwellness. If people ask what it's like, I tend to say it's like having a permanent bout of flu, not the first couple of days when you can't eat or get out of bed, but day four when you're able to eat and to get about slowly, but the least effort still exhausts you.

[Sho-Sho]

Like you I had a definitive diagnosis from a biopsy for GCA, at least you know where you are - I am two years down the track now and wish I had found this forum earlier on in the disease, people have been massively helpful and informative, so always ask if you are concerned about anything and you'll find you are not alone.

Take care of yourself and rest a lot, it is a very fatiguing condition.

Good luck.

[chanel2 in reply to Sho-Sho]

Thank you so much. I have found this forum to be such an invaluable source of information and such caring people. Best to you.

[saffron52]

Hi chanel2 Hope you now have a smooth journey through you illness now you have a firm diagnosis, and all the help from the medical side you want. Take care Angie xxxxx

[chanel2 in reply to saffron52]

Thank you for the good wishes. All the best to you too!

[Daisychain12]

Chanel good luck and I sort of envy you in that my biopsy was pointless. I hope you have a great doc and wish you a speedy recovery in every way. xxx

[chanel2 in reply to Daisychain12]

Thank you very much. But to tell you the truth I knew I had it even without a biopsy. I was just lucky that the piece they removed had the giant cell still intact. Also my Mom had PMR/GCA years ago. My best wishes to you also.

[Daisychain12 in reply to chanel2]

I wish you an easy time on this journey. Keep us informed xxx

[Linny3]

Hi chanel2

What were your symptoms? I keep asking my dr. about it but she keeps saying no I don't have it (which is great) but she can't explain some of my symptoms.

Thanks

Lin

[Daisychain12 in reply to Linny3]

Lin that’s just not good enough. I know how difficult it is but you deserve better than that xxx

[chanel2 in reply to Linny3]

First symptom was the persistent head ache that just wouldn't go away. Then felt so much pressure in my head and areas of scalp was tender to touch. Also my jaw felt strange when chewing. That's when I went to my gp and had blood work done which showed high markers for GCA. After that I was put on 40mg of prednisone. I am now on 60mg that the rheumatologist put me on 2 days after my biopsy confirmed I have GCA.

[Linny3 in reply to chanel2]

Do you know what the markers are?

[PMRpro Ambassador in reply to Linny3]

There are no specific markers for GCA - but for 80% of patients the ESR (sed rate) and CRP (a protein) are raised, indicating the presence of inflammation somewhere in the body. However, the increases in both ESR and CRP are non-specific and there are many reasons why they might be high. The clinical symptoms are always the primary indication - and the raised inflammatory markers are just another stone in the wall.