Just been Diagnosed with GCA

Thank you for the reassurance regarding the weight gain, I live in hope :-) xx

Yes that happened to me when I first went onto pred - I'd had PMR symptoms (the stiffness and muscle pain) for 5 years and hadn't been able to exercise as much as before so had gained weight but in the way you usually do, all over. I didn't put on any more weight with the pred at first but it rearranged itself the same as yours did. And I was lucky with appetite - after having craved sweet carbs in the afternoon for months (didn't know what I wanted, just something) within a couple of days of 15mg pred I noticed I wasn't hungry, back to 3 small meals a day, nothing in between. My daughter is the same but my 14 year old granddaughter can eat for Britain when she's on pred for her asthma though!

And it will probably start to go as you get down to below about 10mg - I have my waist back, and I think that was the hardest thing I found. The downside for me is I have wrinkles now my face isn't as fat!

Im hoping to get down eventually but i went onto 10mg and the headaches came back with a vengeance. Im less focused on my stomach as i can hide that but my face/neck is just awful its ruined my social life. Im sure il get there. Thankyou for the reassurance xx

I think we can all feel a lot of sympathy for you and your social life at your age - most of us are old ;-) , I could probably be your granny just! My granddaughter has severe asthma and was put on very high pred doses in the form of an implant and she went from a size 8 and stealing her mother's clothes to a 16 in weeks. The other kids, especially boys, at school were quite sarky but she just answered them back and did quite well really. Now she has a teacher bullying her about being in hospital so much (about every 3 weeks)!

I think it is more difficult for people who have been slim and shapely to adjust to the weight gain - I've heard people whinging about putting on half a stone! - but I comforted myself by noting that there must be an awful lot of people on pred judging by the shapes you see on a UK high street. Since I know that half the population is NOT on pred - at least I have a good reason for my weight gain. And it doesn't change the person inside - so the friends you may have lost probably weren't real friends in the first place. Many of us have had that experience, the ones who weren't willing to adjust what they did with us to what we could now manage as little old ladies who could barely walk.

I don't know of a GCA forum with anyone as young as you to offer a bit of solidarity - but what about looking on a young people's asthma forum for other young women dealing with weight gain? I'm sure there is one, Naomi did use one at one time.

Thankyou for your kind words it does make me feel alot better.. im sure i will be fine its just getting used to it but id much rather be pain free. Like you say,  atleast we have an excuse !

I will have a look on other forums, but i dont think being younger makes it much harder, its difficult to adjust at any age, its just the younger generation are alot mote judgemental ..

Thanks again x

Hi megan  at least your doctor is not as stubben as mine. He said I have all the symptoms and is treating me for gca as I also have pmr but does not believe it is gca as I am only 40 lol . Well I am still battling to get anyone to listen ! Not that he is 100% sure about my pmr even so he said 5 month ago it was pmr but now he is sitting on the fence about that one as well. Hope you feel better soon . Doris  

I have to say I do wish that some doctors had heard of the saying "If it looks like a duck, walks like a duck and quacks like a duck - it probably IS a duck"

But you are lucky groovy chic - at least he is treating you as if it is GCA! Strange though, there are more references in the medical literature to younger people having GCA than PMR. Being left to try to cope with PMR when you are "too young" is a pain (literally) but the risk of loss of sight with GCA is a real threat with untreated GCA.

I do wonder though how many people are around who have at least mild to moderate GCA that isn't affecting their vision. As long as they aren't recognised and diagnosed the figures and thinking aren't going to change either. It's like side effects of drugs: if someone experiences a known side effect most doctors and pharmacists don't bother submitting a yellow card report and as a result this massive unseen chunk of the iceberg remains unseen. That is surely the case with statins, just to mention one drug group. 

Eileen it has been a very trying few month. First my rheumatologist said it is most probably pmr as he tested me for everything under the sun and all was clear . As my esr and crp are very raised it left him believing I have pmr. Then I saw him again after my hospital stay and my templar artery biopsy.  Which was neg but only 6mm was taken ! To little from what I read. He is telling me all the symptoms are a classic case of gca but says. .. to nice . I don't think he believes me . He wants more tests.  Also he said my thyroid function is out and he said something about vitamin d ? I have an ultrasound on Monday to see if there is anything to see inflammation I guess. Also I have vertigo for the past 3 weeks which on top of everything I could do without.  Oh well onwards and upwards. .. I keep on fighting with the docs . Not in pain at the moment but stuck on 45 mg on pred.  

 

Even when they take enough of the temporal artery only half of the samples are found to be positive. They keep banging on about it being the "gold standard" test - and I suppose it is if since when it comes back positive it is 100% accurate. But to rely on a test that is inconclusive more than half the time when people's sight is at risk does seem a trifle daft. There is a generation of doctors who are almost totally reliant on "what the lab says" rather than excercising clinical judgement. Those of us who have worked in hospital labs are only too well aware of where the tests fall down. If you have been on high dose pred for any length of time then ultrasound won't show much either - the pred combats inflammation and the most recent basic research suggests that the GCA may still be present after 6 months of high dose pred even if the symptoms have gone and all blood tests appear normal.

Has he done anything about the thyroid function? Or given you a high dose vit D supplementation programme if your blood level is low? Some people think that part of the problem is a malfunction of the hypothalamus/pituitary/adrenal gland set-up that controls thyroid function as well as a lot of other things. And vit D deficiency is often found in autoimmune disorders - but whether it is cause or effect is difficult to tell. It can certainly cause PMR-like pain and stiffness but that doesn't usually respond to pred in the same way.

So sorry to hear of your diagnosis being so young. I'm 65 and was diagnosed with GCA last Oct. It does turn your life a bit upside down until you get your head around it all. I was on 60mg for about 2 months and then started reducing.  I was a little overweight to begin with but didn't start to notice weight gain until January this year :-(  As Eileen advises, try and watch your carbs. Other than that get your symptoms under control and you can worry about weight and stuff later on. It's a long journey Megan but you'll get through it. You gave to listen to your body.  If your tired you rest. I used to get wobbly legs with the high dose steroids but that's all gone now. Things will get better just bear with it ok. Wish you all the very best of luck.  Take care.  Xx

 

He has not done anything about my thyroid function yet wanted another blood test. Never seen that many tests on 1 blood from..basically ticked everying and could not fit all the other tests in the box !  I do take bloods but even I did not know some of the tests he asked for! Neither did the person who took the blood . She had to go and ask someone lol. Well I do take vit d 3 forte twice a day. I am now on 45 mg of pred down from 60 in 3 weeks. He said to drop 10 mg each week.. way to fast for my liking  . I got to 40 mg and all my pain in shoulders .. neck .. upper legs and hips as well in my atms came back. The pain in my right side of my head started to come back too. So I called him and he told me to stay on 45 till I see him in 2 weeks time. As he will have all my results and I hope finally an answer. I might quote you .. what you said about ducks. Great quote hehe. Sorry for my spelling and grammar . English is my second language . You are a star and I have learned so much reading replies you wrote on here ! 

Well German is my second language, learned as an adult. If my written German was as good as your written English I wouldn't be complaining!

I just hope he knows how to interpret all the results he gets sent back to him!

Ohvl how did you know I am german?  Don't say I mentioned it before and I have onset dementia . I hope he knows what he is doing as well. Hinted if he can't figure it out he will find me a better doctor .. not sure if he was joking ! 

I didn't - it was just the "English is my second language" comment! But I wouldn't be commenting on a forum in German anything like a fluently as you manage in English! There isn't any hint you are anything other than a native English speaker!

Where are you from?

I am from a small town in Germany called Soest. It is In the north reihn valley .. about 30 minutes from dortmund .  Been married to a lovely english man for over 20 years but only moved to the uk 10 years ago. 

I lived in Erlangen, near Nuernburg, for nearly 10 years and my husband's scientific "Dr Grossvater" (so to say) was from Dortmund - a very dear friend and colleague! I now live in Suedtirol - German speaking but the weather is better!!!!!

Ohh so much better weather . Here in England its grey and misty not nice at all . I do miss speaking german at times. I seem to have lost a bit of my mother tongue . Its evident when I call my parents.  Takes me a while to get into it  

Where are you in the UK? Just order of magnitude?

North Lincolnshire

Eileen, interesting your conversation with another German.....und ich bin Deutsch!  You live in Suedtirol --- I was born in Lienz, Osttirol, but have been living in the USA since 1965 when I met my husband in New York.

Enjoy the weather in Suedtirol.  I miss the mountains, although we have pretty ones here close to Seattle, WA and Portland, OR.

Hello to Groovy_chic from Soest! :-)

Alles Gute wuenschen wir uns. Wie sind Leidenspartner!

Erika

Hallo erika nun wohne schon 10 jahre in england. Also wenn ich in deutsch schreibe muss ich heutzutage nachdenken. Hoffe dir geht es gut . Alles gute aus england .  Doris 

Groovy_chic ist Doris, wie nett! Ich weiss, ich wohne schon so lange hier in der USA, und ich muss selbst nachdenken, wenn ich wieder deutsch spreche.....zum Beispiel wenn mein Brunder aus Muenchen anruft, oder meine Schwester aus Los Gatos, Californien.

Na, wir muessen sehen, wie wir mit der sehr schmerzhaften PMR Krankheit zurecht kommen. Es tut gut, darueber reden/schreiben zu koennen mit diesem behilflichen Forum von der UK.

Dir alles Gute,

Erika

Lienz is actually the nearest big town for this valley! We travel over to Innsbruck though because my husband does some consultancy there and we have an annual Brenner vignette.

Wrinkles? - stress lines from the preds!!

But they appear as you REDUCE the pred! Bit like the "no wrinkles on a balloon"!

It is hard being so young because there is nobody my age to compare symptoms etc with as my gp said they differ with age. Apart from that this isnt the first medical condition iv had to face so im pretty ok with it.. i wont give up  

Thankyou for the reassurance x

I wonder what he thinks is different? The threat to your sight is there and the headaches and other stuff. Tell us - and we'll tell you if it's that different!

I am particularly interested because I'm part of a research group as an "expert patient". It is really important for us to know the full scale of symptoms, whether they are different at different ages and so on. I'm surprised your GP said that as it isn't something I have ever come across in the medical literature. And for most GPs GCA is a textbook diagnosis. It is a rare disease and there are unlikely to be more than 1 or 2 patients in a practice, often none.

Do please come and talk to us Megan.