Just been Diagnosed with GCA
Posted , 10 users are following.
3 Weeks ago I suffered loss of sight in my righy eye, for around 2 minutes. I saw an emergency Doc at a walk in centre, who straight away thought it was GCA. She consulted with the local Hospital via the phone & another colleague. They decided it was a TIA & NOT GCA. I think they made a presumption about me as I have type 2 Diabetes, stage 4 Renal Failure, High Cholesterol & high Blood pressure. The next day I was sent to Hospital, where I was told I would have a doppler scan of my carotid artery, a CT scan & an ECG. This never happened, I only had an ECG. They said because of my weight, they wouldn't bother as I would be unsuitable for surgery if they found anything, so got sent packing with some information on TIA. I know I still had a sort of stroke in my eye, but no one bothered to give me a blood teat to rules out GCA. I managed to get a Doc's appointment on Thurs, told her my concerns of GCA as I was suffering these awful, distressing headaches. She did a blood test. The results came back yesterday & low & behold my ESR was 97, when in fact should be around 17. My other half had to get to the surgery in half an hour before they shut for the weekend to get me started on 60mg of steroids. (Prednisolone) They said I will get a call early in the week to attand the Rheumotology dept. This took 3 weeks to eventually diagnose GCA, with my perserverence, which I think is disgusting. I am already very overweight & am worried about weight gain with the steroids. Can anyone tell me what to expect taking these please & how long before these awful headaches will abate? Many Thanks x
1 like, 63 replies
groovy_chic roweslady1961
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roweslady1961 groovy_chic
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EileenH roweslady1961
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https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
to another thread on this site. In the first post you will find further links to other sites where you will find reliable, medically checked information about GCA. There is also a link to another forum (at forumup) where there are several ladies who have had GCA who are always around. Some used to be on this forum until it was "revamped" and almost unusable for a long time so they gave up! They will tell you loads about their journeys with GCA.
I'm sorry you came up against this (to my mind at least) appalling habit of diagnosing by phone. If there was good suspicion of GCA then you should have been seen in person and at least eye exams done. At least your GP has done something though.
Really the pain should start to abate quite quickly on a 60mg dose but it may be a few days before they go fully - and some people never become totally pain-free. If they get worse or you again have any loss of vision then get your other half to take you to A&E as you may need an even higher dose of pred, possibly as a drip, to deal with that - I hasten to say it is unlikely when you are on 60mg but it is possible and far better to be safe than sorry.
The high steroid dose is quite likely to cause some side effects - as you so rightly say weight gain is one. Some people have found that avoiding all processed carbs has helped with that - and you DO need to be very strong-willed about snacking because the pred may give you a ravenous hunger. Of course for you the other problem will be for the diabetes and cholesterol problems since they can lead to diabetes and raised cholesterol anyway. It doesn't happen for everyone though and maybe it won't make yours any worse - but you will need careful monitoring. Steroids at a high dose can also cause problems with sleeping and there the best way is to not worry about it but try to rest whenever you can whatever time it is. Many patients don't lie in bed and toss and turn but get up and find something relaxing to do like their hobbies - some have taken up new ones they had never thought of before!
roweslady1961 EileenH
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erika59785 EileenH
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On Monday my GP put me on 30 mg of Prednisone for severe back/girdle pain, and after 5 days the pain started to get less. 30 mg is high for me and I cannot sleep well. He said it would take at least 1 month to feel better and being able to walk without pain and to adjust dosage as I feel. I know, I need to do this VERY slowly.
I was on 10 mg of Prednisone before the flare.
Thank you for all of your great advice and knowledge you give to this website as you are a patient yourself.
Erika
GM70 EileenH
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GM70
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EileenH GM70
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However - I could eat rice, polenta, crisps and wheat-free goodies such as rye bread but I do notice that as soon as I eat more than a very small amount of any of those I don't lose weight and only when I cut them out almost completely does the weight come off. Gluten-free doesn't help by the way - the substitutes for wheat in them are very calorie/carbohydrate dense and there is a load of sugar - just like any other manufactured stuff. This sort of diet should also make controlling your blood sugars easier - if you are lucky you will need less medication if you are on any. I'm sure you do restrict your carbohydrate intake anyway don't you? Pred is a problem for many diabetics as it changes the way our body processes carbohydrate and can make it difficult to control blood sugar levels. Does your doctor allow you to check your blood sugar levels regularly? Some don't but it is important to know what foods make things difficult for you.
Yes, the moon face will go once you are able to get to a lower dose, for some people it will go quite early, others have to wait to below 5mg - as with anything else in PMR we are all different.
Exercise is also important - I know it is difficult with PMR to do much but doing as much as you can without making yourself exhausted is important. Many people find they can manage aqua aerobics at a gentle level and otherwise keeping getting up and moving a bit is exercise too and helps avoid the stiffness. Trying to walk for half an hour a day is a good aim - you will find it gets easier. Some people are very lucky and are still able to walk quite a lot or ride a bike. Others are almost housebound even on pred but no one should feel they must be able to do something just because someone else does.
EileenH GM70
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Complex carbohydrates are also known as "dietary starch" - substances made of lots of sugar molecules joined together like a necklace and sometimes forming branches. It takes the body a lot longer to break them down to get the energy from them so it takes longer for them to reach the blood as glucose. You find them in green leafy vegetables, whole grains and food made from them, root vegetables and beans and peas.
OK? Is that a help? Just ask if you want anything more explained.
GM70 EileenH
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EileenH GM70
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GM70 EileenH
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EileenH GM70
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Good luck with your diet - you obviously have the basics sorted :-)
GM70 EileenH
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EileenH GM70
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I see exactly what you mean - how you can improve an HbA1c level without knowing what your day to day sugars are doing is a mystery to me.
That piece of birthday cake on one day isn't going to kill you - but a piece every afternoon might well do so!
ptolemy GM70
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EileenH ptolemy
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