MRI Scan

[Cosmos22Marigold]

Hi all. Off tomorrow for a much waiting scan on head. I have had no sign of pmr in 9 months now except for dreadfull head and eye problem. Optitian said eyes OK and 111 sent me to hospital for a check they said all ok. Rheumatologist suggested to dr to send me for a scan so after 11 weeks I am going tomorrow to find out what is going on. I am fine when i wake up but after 1 hour of taking tbe steroids my head and eyes are bad for the rest of the day. I know I've mentioned this before but nothing is making much sence to me at the moment possibly because i am worried. My teeth are also loose now and one fell out this week. (right in the front i might add) not a pretty sight. Off to my dentist who said i have to have 3 out as they are so loose but at the same time informed me to go upto 15 mgs the day before my appt, 15 mgs on the day and 15 mgs the day after the extractions. His knowledge that he informed me came as a surprise to me as i was not informed about this recently when having my cateract done. It was DL who told me and i was truly grateful. I am following her plan on reducing slowly from preds and am now on 7/7.5mgs for 5 weeks. Just wondered if anybody else had similar problems with head and eyes. Thanks.

[Rose54]

Hi I too have a problem with eyes after taking steroids

Like you there fine when waking then after meds dont seem so clear thay inpove late afternoon.

Optician says no problems and although I do have cataracts in both eyes thay are very slow growing .

He agrees it most likely to be meds but I do take others beside Preds

Good luck with the Scan

[Cosmos22Marigold in reply to Rose54]

Thanks. Stops us doing so much doesnt it.

[DorsetLady PMRGCAuk volunteer]

Good luck with scan…and teeth 🌸

[Cosmos22Marigold in reply to DorsetLady]

Thanks, DL. Im keeping to your plan so fingers crossed.

[Hidden]

Hi, me too with eye issues and had them ever since starting on 15 mg back in 2019.....worse when had to increase to 40mg for GCA. Like you, I'm doing the 'dead slow and nearly stop' The only way I can describe how my eyes feel is that I've been bawling for a month, feel heavy. I keep having to blink, then they can go hazy. I have my eyes pressures taken every 3 months. Last time 16 one eye and 18 the other. That's a good pressure reading. I have small cataracts growing too and hope it will be yrs and yrs before surgery is required.

Are you experiencing headaches to need an MRI ?

Hope all concludes that everything is alright.

Anne

[Cosmos22Marigold in reply to Hidden]

Hi Ann. Im experiencing the eye problem just the way you described too. Reason for my MRI was the right side of my face goes numb even my nose and then it eases off. Very shaky and no energy. Still its all done now and took about 35 minutes in the scanner. I've always wondered if it was PMR that i was diagnosed in November 20. I shall hopefully find out now. I dont have to have pressures checked in my eyes. My cateracts developed in 6 month of taking steroids. Not a sign of them before but it could also be my age. The 2nd one is being done on the 12th October i hope. I hope your eyes improve soon. Nuisance isnt it all this.

[Hidden]

Yes it is a nuisance. Right now more concerned about my kidneys....thinking it could be down to steroids, but I've just read a link by a lady on here....seems they're not one of the culprits (can't blame pred for everything ) but could be due to autoimmune disease, which I think PMR is. My urine is very foamy and has been for ages, but took no notice. Could be down to being dehydrated, as I know I really do not drink enough water. My mind is working over-time, as I lost a male cousin from kidney cancer early sixties. In fact cancer is in my immediate family big time. Father and two sister all died in their middle sixties...I feel blessed I've reached 74, and before PMR/GCA I was in pretty good health. All down hill from now on then !! I think I'm going to do the urine sample tomorrow instead of when I next take another blood test arrange in 4 weeks time. I can't believe what one can't eat with kidney disease. No wholemeal bread (that' all I've eaten for years). Now I eat Sourdough bread. No Avocado (love these) No tomatoes, no bananas, no leafy green veg oranges or juice....the list goes on and on....I think I'll starve myself !!

[Cosmos22Marigold in reply to Hidden]

Hi Anne Sorry to hear of your cancer worries which it must be for you having lost members of your family. I wondered if you have even been on vitamin D tablets. My new Dr told me to stop taking them in the summer as i was getting enough sunshine. Only take them in winter. He said that too much vit D can cause kidney stones sometimes. I'd never heard that before so stopped taking them which were prescribed by my old Dr. I should try drinking more water if you can. I dont like water but make myself drink it to try and get rid of my head symptoms. Take a urine sample into your Dr and get it checked. It will put your mind at rest. It is one thing after another as we get older but i am determined to get on with life as best i can. My health was great till PMR arrived, possibly caused by loosing my brother and sister in law last year. So much stress. Try not to worry too much as that doesnt help at all so everyone keeps telling me but its true. Bye Rita

[HeronNS]

You may find that taking Vitamin K2 supplements, if you aren't already, may help your remaining teeth to stabilize. It won't be overnight but it should help as K2 sends calcium to the bones and helps improve their density. The jaw is particularly sensitive to losing bone mass I think. Apparently K2 also helps the teeth themselves, not just the surrounding bone, although I don't know how it does that!

Vitamin K2 also helps reduce the problems associated with calcium supplements as the calcium is directed to the bones and therefore less likely to settle into unwanted places, like organs or the insides of blood vessels.

[Cosmos22Marigold in reply to HeronNS]

Thanks for that info. I'll certainly try it as i want to keep what teeth i have left. Ive always looked after them. It all makes sence so I'll get some tomorrow. Wish it would make my hair thicken. Im asking too much arnt I!!!!!!!!

[HeronNS in reply to Cosmos22Marigold]

I don't know what helps hair - I do know I'm grateful that I started out with very thick hair as it is definitely not that any more!

[Cosmos22Marigold in reply to HeronNS]

Think I've tried everything but lost so much now. It is so thin. Lucky yours was thick to start with. We must have some luck now and again. X

[HeronNS in reply to Cosmos22Marigold]

I know it's better on lower doses of pred.

[Cosmos22Marigold in reply to HeronNS]

Well, I'm getting there slowly , 7 and 7.5 mgs so hopefully it will will get better. Thanks. So reassuring and thats really what i need at the moment with so much going on.