What happens next

[olive2709]

I have had biopsy ,on steroids, going back to GP next week were should I be sent next.GP trying her best but I'm her first case of GCA

[PMRpro Ambassador]

In my opinion she needs the advice of an expert. GCA doesn't really belong in the care of a GP, particularly one who has never met it before.

On the other hand, she may find this publication useful:

rcpe.ac.uk/sites/default/fi...

which is an article presented at a medical symposium to assist GPs with the diagnosis and treatment of polymyalgia rheumatica and GCA and written by John Kirwan (a top PMR/GCA specialist) and one of his staff at Bristol and may provide the info she needs to do it. It's title is

"Our approach to the diagnosis and treatment of polymyalgia rheumatica and giant cell (temporal) arteritis" and is by V Quick and John Kirwan

[DeliaGray]

I was diagnosed with GCA in July. My boiopsy was not conclusive and so the DR. diagnosed as a reesult of my sed rate test and creatin protein test. I am a Brit living in San Francisco. I was immediately placed on 80 mg. or prednisone which since then we have been reducing down to 30 mg. However, now my symptoms have returned, and I am back up to 40 mg. A little disheartening, but I am coming to accept that this is the nature of the beast. I think since this is a comparatively rare and serious disease you should have a specialist caring for you. My Dr. was very prompt in turning my case over to one. Over here it is even more rare than in England as most cases are northern Europeans. Delia

[PMRpro Ambassador in reply to DeliaGray]

Being down to 30mg in barely 3 months is terribly fast, I'm not surprised your symptoms have returned. Recent research done in London and Southend has shown that there is still evidence of remaining inflammation in GCA patients even after 6 months at above 20mg (what is defined as high dose pred) and that the implications are that higher longer is indicated. Relapses/flares are common in the first 18 months - probably because of trying to reduce too far too soon.

The best thing about the research even if it does suggest needing even more pred for the moment is that it provides an approach for looking for better treatments - and even the cause. Nothing is all bad!

[DeliaGray in reply to PMRpro]

Thank you for the encouragement. I am so pleased to have found this site. It is very supportive and helps one feel less alone in the process of it all. Last evening after the results of my latest blood tests I spoke with my specialist who is a rheumatologist and he confirmed that I was correct in returning to 40 mg for another 2 weeks. It seems as though the Drs. are much more obsessed with the complications of prednisone than they are with the effects of reducing too quickly. After reading letters on this site I had come to the conclusion that the British Drs. mostly keep a certain dosage for a month at a time. Mine had me reducing every 2 weeks. He now has told me to go according to how I am feeling. I recently had a bone density test and was told that now I had a 10 % chance of a spinal fracture in the next 10 years,to which I replied, "then that means I have a 90 % chance of not having one", he also told me that I had a 30% chance of a hip fracture, I replied, "then I have a 70% chance of not having one.!" I like that much better !!!. Thank you again for the encouragement. By the way does anyone know if flying is out of the question whilst trying to get this under control?

[PMRpro Ambassador in reply to DeliaGray]

Like your style - optimism is everything! High pred and not going blind versus lower pred and increasing that risk - no, I'll take the risk of a fracture I think. I might get run over by a bus next month...

Have a look at this link - there is a good reduction plan for GCA, fairly esy tp understand (it's the one I recommended above)

rcpe.ac.uk/sites/default/fi...

Follow Sambucca's link to an excellent source of info and a further link to another forum with a load of travellers - don't know if there are GCA people amongst them offhand though.

Longhaul or just round about? I've done longhaul with PMR (and possibly GCA but no real visual symptoms, just jaw and scalp pain that went away on its own) - you just need to rest a lot around the travel days and juggle the pred a bit. Whether it affects the GCA I don't know - a good question now I think about it!

[DeliaGray in reply to PMRpro]

Thank you for your encouraging response. I did ask my rheumatologist re the flying with GCA. He thought it would not affect it other than the possibility of catching coughs etc from other passengers because of the fact that this is an auto immune disease. I am afraid of losing my sight over the Atlantic. Not really a good thing!! I would like to hear from people who may have done it. Mostly it would be the USA to England.

[PMRpro Ambassador in reply to DeliaGray]

On that basis - whilst you were having symptoms then flying would be silly but once you are on a high enough dose of pred that risk is reduced dramatically providing you don't then reduce too far or too fast.

Do have your flu shot - not the nose spray, that's live and not for us.

Do you return to the UK often? I live in Italy - once a year is our limit! When we lived in the UK we came this way at least 3 or 4 times a year The desire to head for GB is fading steadily!

[DeliaGray in reply to PMRpro]

Yes, I have lived here for 46 years and have gone home once or twice a year. I still have family there. However, I was there in March of this year and had originally planned to return for Christmas, now I will not be doing that. San Francisco is not a bad place to be though! I just wish they knew more about this disease over here. I have always been blessed with good health, I am 76 and still work full time in sales. I refuse to let this thing get to me but wish to be sensible about it.

[PMRpro Ambassador in reply to DeliaGray]

I have been to SF twice - and loved it! My husband was discussing doing some work with a company in Pleasanton when we first came - it is twinned with Blairgowrie in Perthshire. I was walking from the hotel to the nearby mall and met someone from our church!

Isn't it funny - the US has this reputation for knowing it all when it comes to medicine but they really aren't so hot with PMR/GCA! A few of them admit it at least.

[DeliaGray in reply to PMRpro]

I totally agree, my rheumatologist was most impressed that my regular Dr. was able to diagnose it and said it was a "Stroke of genius on his part" I think it is because there are so very few cases ever reported over here. There seems to not be a lot of time devoted to research on it in the States, so that is why I am thrilled to find this site.

I am glad that you enjoyed S.F. It truly is a beautiful city and has absolutely won my heart, although deep down I am still very British. Have a wonderful day, I am getting myself into gear now and off to walk my super standard poodle and get my Starbucks Latte with added salt, as my sodium level also seems to be a problem. I have got used to salt in my gallons of milk and coffee, and on my food.! !

[PMRpro Ambassador in reply to DeliaGray]

Could only improve a cup of US coffee if you ask me! As for me - soon it'll be beddy-byes time Heading for Tuscany tomorrow

[DeliaGray in reply to PMRpro]

Have fun.!

[olive2709 in reply to DeliaGray]

Good for you my GCA is 3 weeks old very new to this. 33 years ago had a bit of a thing did not look good thing is my doc used positives words ie5% survival rate not the other words also told me to give myself a mental kick up the rear every day and if needed get a physical kick from some one it worked still going

[jinasc]

olive2709

Your Gp should refer you to either a Consultant Rheumatologist or Consultant Opthamologist, preferably a Consultant who is interested in PMR & GCA or Vascultitis. GCA is generally referred in the first instance to Secondary Care level and once diagnosed and confirmed the GP then monitors and you will probably get 3 or 6 monthly appts with the Consultant. I am not surprised your GP is not au fait with GCA some GPs go the whole career without ever having a case of GCA.

Your GP could, of course, look at the British Society of Rheumatologists Guidelines on the Diagnosis and Treatment fo GCA, which are on the internet and free for anyone to read, they are also on the NHS Site, and various other sites, including pmr-gca-northeast.org.uk