Hi, About 5 weeks ago I noticed I was running a temperature from time to time. Told me GP,he got me to keep a temperature chart for a week and took bloods. Bloods showedf inflammation, the following week I showed him my temperature chart and he got me a chest x-ray and took more bloods. X-ray clear, blood still showed inflammationbut it had reduced. GP spoke to consultant who felt things had peaked but to refer me to him urgently. Well, after 10 days my GP was fed up of the wait and I asked if I should go private, that I did and was seen next day. Enough symtoms to diagnose TA and put on 60mg daily prednisone and saw next day by eye hospital, changes noted at back of eye, vision not as good as previously but still ok with my glasses on. Question, do you think I was started on Steroids in time? with those symtoms it could have gone on much longer undected, that I still have vision 5 days after steroids began, is that a good indicator??? Any info would be greatly appreciated, sight loss is terrifies me! I know I also have to think of affect of steroids but at the moment my sight is worth it! I'm trying to stick to low salt, low fat, high calcium (by tablets as I'm dairy free except goats products), high vit D and Risedronate sodium for ostoporosis. I also have MS & Alopecia Aerata, getting beyond a joke now! Any help appreciated.
Sue
Sue
Sorry to hear you have GCA/TA, however the 60mg should be enough to save your vision, but if whilst you are on the 60mg you have any blurring or mistiness, contact the Consultant and/or GP and if you cannot get to see them pronto off to A&E. No waiting.
To help you understand, visit www.pmr-gca-northeast.co.uk and under Useful Medical Information read the guidelines issued by the British Society of Rheumatologists on the treatment and diagnosis of GCA. Also you can read up a couple of patients stories who are now in remission.
Do not think about the effects of pred, no-one gets them all - but prednisolone is the only drug that is standing between you and either partial or total loss of vision and once its gone its gone. It is difficult to get your head around everything in the early days, but your GP sounds like a good one so hang onto him/her. I also think that the Rheumatologist should now be treating you on the NHS.
One thing I would say, go to your chemist and talk to him/her, take a list of all the medication you are currently taking and ask them to check it all out for compatibility. Pharmacists know more about drugs than any other medic. Don't buy any OTC or take Homeopathic till you have asked.
Good Luck on this journey you did not want to take. But come back and ask questions. Where are you located?
Yes Sue - (I take it by TA you mean giant cell arteritis?) the chances are that if it is GCA that is causing the changes they saw at the back of the eye then the high dose of pred you have been on will have averted the risk to your sight. As soon as you start on high dose pred the inflammation that is narrowing the temporal artery reduces and the blood flow improves.
As you say - the side effects of pred, however unpleasant, are preferable to sight loss. It is possible that some of the change in vision is due to the pred - I've been on a far lower dose than you for PMR but I still noticed some changes and my specs have sat at varying positions on my nose but that has all now settled down so I'm glad I never changed the prescription.
What were the symptoms that suggested GCA? You don't mention anything that would indicate it and it would be helpful for us to know for the benefit of others. There is another cause of the changes at the back of the eye but if you were seen at the eye hospital I doubt you need to worry too much about that. It also sounds as if the rheumatologist your GP spoke to doesn't realise that "urgently" means within a couple of months rather than "now" - that is an emergency and is best done by the GP speaking to the consultant and then sending you to the hospital A&E with a referral letter.
As for diet - don't go too "low fat" - most of the "low fat" products are actually "high sugar" and that is the real enemy, especially when you are on pred. Pred changes the way you process sugar and can lead to pred-induced type 2 diabetes so reducing processd carbs and sugar is more important than low fat.
Has your GP referred you for a dexascan? That is also needed early in taking pred because then you have a baseline of your bone density - some of us have taken pred for a long time without taking any "bone protection" other than calcium/vit D and our bone density has been fine without adding another medication into the mix.
I see MrsK has had her post confiscated for the moment - I'll put up another post in a minute that will provide you with a link to a support site just in case the computer decides my link isn't allowed and hides this too! You need some answers fast not in 2 or 3 days once a post has been inspected! You could also google the PMR and GCA UK northeast support website which will give you a lot of info from others and medics.
This link takes you to another post on this forum with approved links to a support site and another forum. There is also a link for a paper about diagnosis and treatment of PMR and GCA aimed at GPs but which is fairly easy to read for patients which you may like to look at.
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
Eileen
Thank you so much for replying, you've put my mind at rest, things were feeling pretty bleak at 04:30 this morning when I couldn't sleep! The symptoms leading to dx were, raised blood imflammatory markers, fever, headaches, sore scalp, jaw ache on eating, the Rheumatologist (Dr Laversuch) said that was enough to suspect it and start treatment, she has booked me in for biopsy this Friday. I take your point about low fat =high sugar, I'll watch that, I'm a bit of a health freak as I've beeen using diet to try and control my MS, I had recently started eating coconut oil, seems everyone got it wrong about that oil years sago, it has fatastic health beefits and actually lowers cholesterol. My health shop rang Solgar to ask about cococnut oil whilst on Pred, they said it's fine but I may stop having the 2 dessert spoons a day and just use it to replace other fats. Sugar; I'm more a savory person but do like a couple of squares of the strong dark choc most evenings, hopefully that's still within limits? I'm giving up other savories which are high in salt. I've not bee referred for dexascan, haf one in 2001 which put me borderline so already take Risedronate Sodium, I may enquire about a scan againnow though. I'll check out the support grroups you metioned, lots of questions but must dash now. My thanks to you once again, a BIG help. Sue x
Hi Sue
Firstly, I hope it reassures you to know that even though it took nearly 4 weeks for my symptoms (head pain, jaw pain on chewing, fever, high blood markers) to be diagnosed as GCA/TA and treated, in spite of appointments each of those weeks with different GPs, 40mgs of Prednisolone saved my eyesight. I did suffer a lot of blurred vision - severely on the high doses - which my rheumy said was as a result of the steroids. I have been in remission and off steroids for coming up to 2 years.
It sounds as though you have a very caring GP - pity the rheumy hadn't been a bit more 'on the ball' with an emergency appointment, especially with those symptoms of your's being so suggestive of GCA/TA. No matter, you are now on the right treatment and will be well monitored.
I didn't take any calcium or stomach protection medication (the latter caused instant problems so was discontinued after a few days). I did, however, have a calcium-rich diet throughout my days on steroids, which included lots of oily-fish, and daily 'live' yoghurt with my breakfast, also helpful as a stomach liner - perhaps there is a version from Goats! I also swear by Manuka Honey, having a teaspoonsful a day on my cereal and yoghurt - it can help the immune system which can take a battering whilst on steroids, and is also good for any esophagus problems. It also has a whole host of other health benefits. As for your daily few squares of dark chocolate - you're a girl after my own heart!!!
If 'somersetsue' means you're in Somerset, then check out the website mrsk has given you - there may be a support group that you can get to.
Thank you so much, your post has reassured me. I live in Taunton and see there is a group here, not sure if they have an on-line forum, I prefer that to going to meetings particularly when feeling weak, it was knowledge gained via an MS on-line forum that got me through after being dx with MS years go.
I've read all such of scarey stuff about heart attack and stroke caused by TA/GCA, I know we shouldn't look it yup on the internet but I'm a person who likes to know and try and understand things, where else is there to go! I've never been a lover of yogurt but will get some goats and try if I can get it. I've been on a prescribed dose of Calcium 1,000mg daily for a while because of the borderline osteoporosis, I may ask my GP if that should be increased, I'm 60 next week so prescriptions will be free YAY! I should add that a glass of red wine goes with the chocolate 
Sue: I had lucentis eye injections for four months for macula edema at which time
I lost all stamiina - unable to walk, dress myself, etc., etc., and was diagnosed
with PMR. Now I see questions about blurred vision and so there is definitely
a connectiion between the two. Seven months after PMR diagnosis I am down
to 7mgs of prednisone and 4-6 week injections of Lucentis in the left eye, however,my right eye is now involved and had injection in that eye also which
allows me to see much better but still blurred.
Keep up the good fight, bless eah day, rest with gentle movement, no guilt at
feeling fatigue, listen to your body, share info and we'll get through this and pass
the good word on to those coming up. God bless. Judygirl.
I don't blame you for looking for answers on the internet, it's your body after all and if you don't look out for it then no-one else is going to. However, it's important to know which sites are reliable as there is so much rubbish on the internet.
With regard to your fears of heart attack and stroke whilst suffering from TA/GCA, it is often recommended for us patients to take a small aspirin daily. Having said that, it wasn't something that was suggested for me.
One very important check to have, both whilst suffering from GCA and post-remission, is a chest X-ray every 1-2 years to rule out aortic aneurism. Again, this is something that I wasn't advised at diagnosis but I have now had the first one a few months ago - all clear thankfully.
Does the calcium supplement you take include Vit D? If not, then do ask for a Vit D blood test because if you are found to be deficient you will need a big boost of Vit D3 to restore it to within normal levels. Many of us have been found to be deficient, including those who have been taking Calcium plus Vit D (Calcichew). I had the test after coming off steroids, was found to be deficient and advised to take a high dose supplement for 3 months. This restored my levels to normal, and I now have a 3-month course once a year. Some patients remain on a small maintenance dose permanently. The added bonus is that the extra Vit D enables more calcium from your diet to be absorbed into your body. Don't know whether that glass of wine would qualify though!!
If you aren't already aware, calcium should be taken a few hours after the steroids, so Pred for breakfast, calcium for lunch and dinner!
The individual gruops won't have online forums - but the one you will find in the link I gave you on forumup has members on it from many of the groups and functions like an on-line support group. We have a laugh, complain. moan and generally act like a big coffee meeting. Come and visit over there.
The northeast support group site has all the info you need - and all carefully checked so nothing to fear there even if it is on the internet!
Do any of the companies do a greek-style yoghurt in goats milk? It is very different from ordinary yogurt. I suppose if you got a yoghurt maker and a culture you could make your own with goats milk.
Thank you. I did a lot of research into Vit D3 when first dx with MS in 2001, my homeopath (an ex GP) was excited by my findings, I have been on high dose Vit D3 since then,originally in 4,000 iu daily now down to 2,000 iu daily which is well below toxic levels of today. I had blood tests to check my levels in the earlier years of taking them and was at one time in the optimum range, hopefully that has continued. I've been taking Pred and Omeprazole after breakfast (porridge & banana) then Calichew, Omega3, magesium, Vit C, Vit D3 ,probiotic, sage tablet after lunch with a second Calcichew after my evening meal. I alsotake risedronate sodiu once a week. My vitamin regime is what I've been taking for about 12 years for my MS, I have decreased the doses in the last couple of years though.
Now I need to try and manage diet to avoid weight gain, moon face etc! Low salt is my current thinking.
Thank you for taking the trouble to respond.
Sue
Thank you, I'm on there looking now 
Sue
It would be better to take your Calcichew after lunch than after breakfast as Prednisolone can impair calcium absorption and thereby new bone formation.
I never had any salt in my diet but still managed to succumb to a bit of a moon face!
It can help to avoid steroid-induced weight gain if you reduce your intake of refined and processed carbs. I reduced my intake of white potatoes (substituting with sweet potatoes) and root veggies such as parsnips as these foods turn to sugar in our bodies and could add to the risk of steroid-induced diabetes.
Sorry bad punctuation, calcichew and other vits are taken after lunch, breakfast is Pred & Omeprazole. I though my diet was salt free, don't cook with it, don't add it to meals but looking at labels I realise quite a lot is sneaked into our food, along with sugar!! I made sweet potato ovenchips on Sat, quite nice although not crispy. I only eat homemade wholemeal seedy bread, don't eat pastry or cakes so am hoping my diet is almost fit for prednisone.
Thank you for your helpful suggestions, I'm going to mis sauces and gravies, don't like dry food but sauces are loaded with salt or sugar it seems! Made a nice sala dressing with cider vinegar, olive oil and a lime juice, not bad!
Sorry, I should have read that differently! Snap with the home-made bread - lovely hubby makes our's! Yes, it's an eye-opener when you study the food labels and realise how much hidden salt and sugar some so called 'innocent' foods contain. Similarly with low fat foods - they can contain loads of sugar or sugar substitutes. Sweet potato oven chips sound nice - must try those!
That isn't particularly high dose vit D - when I take it I usually take 10,000 IU and nowadays when it is being replenished they use far higher doses than that over a couple of months to get the body stores up fast. They have realised that the quotes of 4000 IU being dangerous is rubbish. What is dangerous is allowing the blood level to go over 150-200 over a long period - the Gateshead Trust guidelines say ideal has been set at 80-125. The formerly accepted level of 30 or so is clearly far too low.
They know that vit D is almost always low in MS - it is almost always low in most people with autoimmune disorders of all sorts. What isn't know is whether it is cause or effect of the autoimmune problem.
By the way, a low salt diet doesn't help greatly with the weight gain/fluid retention when taking pred. I use no extra salt at all when cooking, haven't for 30-odd years, and cook everything from scratch so am not taking it in in processed foods and it didn't stop me having a fat face! Low carbohydrate seems to help with the weight gain in using pred - pred changes the way you process carbs and avoiding them also avoids the problems that can cause.
It's nice to chat with someone else with a belief in Vit D. When I was first dx with MS 4,000iu was thought high but as you say 10,000 is considered safe these days. I think I'll increase mine again and ask my GP if he will do a couple of 25(OHD) blood tests to check my levels before, then perhaps a year later, he's always been supportive of my help myself approach. Bad news about carbs as with MS I need them for energy! Looking on the bright side, I have a petite head and face so perhaps a bit of extra fat there will suit me Very interested to hear of any other tips you may have, I'm a believer in what we eat is what we are and it has a huge impact on our health. I'm so glad I found this forum, chatting on here is empowering me , THANK YOU.
Low vit D can cause very similar symptoms to PMR and is one of the things they should check when you present with the symptoms.
I'm not saying NO carbs - just no PROCESSED carbs! I eat loads of veg and some fruit. I see the reasoning behind "you need carb in MS" - but I suspect it is also based on the same misunderstanding of how our bodies work and there are varying views: I just had a quick look but don't have much time just now but will happily have a search later.
I cannot improve upon the advise given so far; however, if you want the full medical reasons for not consuming processed carbs and sugars and how to minimize pred induced type II diabetes read Gary Taubse, "why we get fat : and what to do about it".
To summerize, processed carbs and sugar cause inflamation of the blood vessels, PMR-GCA causes inflamation of the blood vessels.
Interesting, so much so I'm just buying the book, thanks for recommending.