GCA

I am actually losing weight, have lost 4kios since being in hospital, but I suppose coz I have CKD and on a renal lifestyle the hospital didn't feed me well, I am starving on the preds but eating more and losing more. Indigestion was bad yesterday, Doc came out today and said I could take 2 opeprazole. I am already on paracetamol and Oxynorm now he has written me up for Tramadol.

I doubt that will help - though I hope it does.

The weight loss could well be due to the BS levels - has the diabetes team been brought in?

My diabetic nurse sent me the tritation paperwork so I am working through that on my laptop non a spread sheet.

I am an insulin dependent diabetic and at present my diabetic team have sent me the e mail about tritating what Insulin units i can have, this was working well but just now my bm was 26.3. I didn't hardly have any brekkie but at lunch just a salad and this evening a piece of salmon. My mouth is so sore my right eye is still blurrred. I have pain mostly over both temporal bones across forehead, back and shoulders. Bruises are appearing everywhere but I have not noticed bumping into anything. My finger nails are growing but spindly, why oh why is so much happening at nonce. 

Thanks to all who have wriiten I just need encouragement to continue as yesterday all I wanted to do was die. But now I am feeling slightly more optimistic with all the replies I am getting.

Thanks, I have too much vit D as I have osteopenia, the hospital stopped the calceos I have been taking since I was diagnosed. Now I am have to have a blood test for renal and for the calceos. Though I do have some cool sunglasses, plus the patch the hospital gave me for my right eye.

Osteopenia shouldn't lead to high vit D - but too much calcium could. Have you not been closely monitored for calcium and vit D levels since you are a renal patient? If not - why not?

Hi Sheila, I'm so sorry you are definitely going through the mill.

just a thought re your eyes, of course it could be your diabetes and raised blood sugars, my father used to be like that when his blood sugars were raised, he was an insulin diabetic. But more recently I had blurred vision with my prednisolone which has improved with my reduction of doseage.

in between all of that I after 1 month of being on prednisolone at 30 and 25mg stage, I thought I was looking sight in my left eye, it was blurred like I needed a windscreen wiper, nothing cleared it, I went to A&E they sent me to the eye clinic, it turned out to be a posterior vitreous detachment, that in time absorbs the leaking fluid and the blurred vision resolves at around 3-6 months, which it was doing well then it did it again, less dramatic this time but I had it checked again and it was confirmed it had happened agai, but nothing had become any worse.

Just a thought re your eye problem.

You take care and rest if that's what your body is telling you to do.

No I haven't but when the gp came yesterday he said I needed a blood test, (tho all I have given justly lately in hoispital has been numerous tests) So tomorrow when I have my renal test done they are going to do the calcium one as well.

?Yes thanks for that I had tests whilst in hospital for perpheral vision, then the day after I was discharged they had  me back in to the opthalmology clinic. And it was awful too many bright lights, drops that hurt and I couldn't see then my chin kept falling off while the doctor examined my eyes. She was a bit impatient and all I wanted to do was go home and cry.

I have it on the Predinisone also when I got under about 10 mg it faded away. I hope it will this time also!

So you had a sensitivity to foods in your mouth when you were on Prednisone but when you dropped your dosage below 10 mg it went away. I am very interested in this because I am having serious problems with eating myself and am beyond frustrated because I can hardly eat anything without it burning my tongue. And have no idea why. And tomorrow I have an appointment with my dentist to start investigating the reason why. I've already seen my doctor about it and because I had read that anemia can cause this I got that checked and that was fine so I am at a loss as to what could be causing my tongue to be so sensitive to foods. And now hearing what you're saying is making me happy because it gives me a potential answer and I am above 10 mg..

I do not have to be eating my mouth burns, tongue burns all the time, we have been talking about trying so ice cube made with fruit juices.

Well that sounds exactly like burning mouth syndrome. Which is what I thought I had for the longest time but I now know I don't have. If you do Facebook you should look into the burning mouth syndrome Facebook group it will give you a lot of information about what the other people do to help combat that problem. It's a horrible condition to have to deal with. I was getting these horrible stabbing pains in my tongue which my dentist insisted was burning tongue syndrome but once I started in that group and heard the other people talking about their symptoms I realized I do not fit in that group. I don't know what those stabbing pains were from but they went on for years and now they've just stopped and I haven't had one for probably a year now. But I do have this horrible burning tongue when I eat.

No my mouth burns, but it's just one of the Pred side effects for me, hell my Diabetic neuropathy is driving me nuts, along with the shakes. I will get down to a lower level and be much better. Love to just jump down, but will go slowly. Keep walking and smiling. Thank God I am here to keep fighting!

I texted my dentist and she is seeing me on Wednesday. I'll ask her about that thanks.

I don't know what burning mouth syndrom is, but I have had Lichen Planus for 40 years. It makes the entire mouth burn, but there will be tell tale white patterns inside your mouth. I was told at the time that it was due to a drug I had been given after an operation. There is no cure for this , but I do know that chocolate and chilli and a lot of toothpastes definitely make it flare up. Other foods probably do too, but I have not discovered which ones.

?The only relief they can give you for this problem is steroid spray. So in theory I thought that being on steroids would keep this problem under control. Not so - it  flares upagain  and so the Dr thinks the flare ups are now due to exess acid reflux. which occured after taking pred.

?I tried a lot of toothpastes in the beginning and eventually found one which made an iincredible difference. I used that paste for 30 years and had no flare ups unless I had a chocolate or chilli treat. Then 10 years ago, that company changed their toothpaste 'recipe' (not very scientific word). I contacted the company to try and get information as to what was in /or what was not in their paste which was helpful for my Liccchen Planus. It was a shut shop - no help there.

Hmmm - perhaps I should go take my own advice and try changing toothpaste again - perhaps that is responsible for my flare ups again.

 

I have read about that disease in my search for a resolution to my tongue problems and it sounds just awful. I have found a toothpaste that helps me but I don't know if it'll help you or not or if it's available in your area but the name of it is Xyli-White it's made by Now Solutions which is in the USA. And I have to buy it in health food store.

Good luck on your search for a toothpaste that works for you.

What's than then? I texted my dentist who has been away on a course in Germany, she is back on Thursday, so I thought I would make an app when I feel safe enough to walk out myself. The awful other thing is seeing my car in the drive and not being able to drive anymore..

I don't do social media, when Kanye West gave up I did to.