Hows the weather friends? Its yet another day of grey to black skies and rain rain and more rain. I began on 60mgs of Pred way back end of Dec 18. Am now down to 8and a half mgs from yesterday I cant cut the tabs and yes I do have a cutter so its reducing by 1 and a half from 10mgs if you can understand. Methotrexate reduced to 15mgs a week. Main problem is balance, It has changed from feeling I was on a roundabout to half the week randomly feeling very unsafe when upright but fine when sitting down. Tiredness plus plus. But its the unsteadiness that bugs me. I also have Steroid induced diabetes badly monitored I had to refer myself to a diabetic nurse Appointment by phone. I Refused the Alendronic Acid and was vindicated by a Dexascan refused omniprozal still in the box. Feel like all I am good for is to carry out a carrier bag of meds and that's it. I believe my age to be a factor as well as overwork and NICE instructions on screen so thank goodness I could enter this forum get advise and support.
What check should I ask for in order to ascertain if and when my Adrenal glands do start working Please? Advice welcomed.
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Valentina1
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Tablets - ask for prescription for 1mg and 2,5mg dose - that way you can mix and match to get dose you want. Works until you get down to 2mg.
Your adrenals won’t even start to think about working until you get below 7.5mg (approx equivalent physiological dose body normally produces) - so you can’t really do anything about them as yet. But you may feel fatigue a bit more once you get below that dose, however doctors won’t consider a test until you get to 5mg - some even say 3mg.
As for unsteadiness have you mentioned to GP - could be your blood pressure needs checking. You do need to follow this up, otherwise you could find you are falling - and that’s no good for anyone.
thank you I had rather thought that might be the case. Racing fast to 83 I realize it is doubtful I will get off this medication which changed my life so very significantly I have for months told my Gp about the unsteadiness. Ignored. I have purchased a blood pressure testing machine and I appear to be really stable and actually good. It has been mentioned that labrinthitus can cause this sensation . It came on with the steroids 60mgs a day for 2 months early in the year It was almost worse then I was on a roundabout I lost nearly 2 stone not a bad thin g but I wasn't trying. My body felt as if I was being poisoned It felt as if it was trying to get rid of this steroid. Then pred induced diabetes on top as well as another DVT So you can understand how I am. My confidence is nearly rock bottom in the GP service I waited and waited to see a consultant finally July. Then Methotrexate 6 weeks to reach the optimum better with it but I have no idea of when this is stopped. Now down to 8and a half mgs of preds not too well this week. This week I ask for a supply of pred in a variety of mgs. Bloods again. My right arm wont take any more. I don't know what I would have done without this warmth advice and friendship with people i will never meet.
However I can watch the frost creep early morning over my car and now the sun up melting it. Many cannot do that. I can share my problems on line and know I am not boring friends locally.
There's always someone around online... Well almost always
My friend who is 84 had a bit of a fall about 4 months ago. Fortunately she didn't break her hip but it took 2months for the pain to go. After 4 weeks when her confidence was at its lowest I drove her to mobility shop, took her inside before she changed her mind. She bought several things but I persuaded her to buy 4 wheeled rollator with a firm seat. After a couple of days practice round the house then up the street, she has started coming out 3 times a week. She just sits on the seat when she needs to. It hasn't done me much good trying to put it in the car but she is a friend and I want her to do as much as possible to enjoy life. I will definitely get one as I am jealous when she sits and I lean over my crutch!! 🌻🌈
I had labyrinthitis many years before GCA, and although it does come from a mild form to really debilitating (know that) it’s usually accompanied by sickness, and sometimes the inability to lift head off of pillow, so not sure it’s that. But it is worth getting your ears examined as balance is affected.
Been watching the frost as well - on car and summerhouse! Lovely clear blues skies, so just venturing out, once I’ve fed the garden birds .
I am appalled your GP has ignored the unsteadiness - they are supposed to be keeping you out of hospital!! I wonder if you might get more response from a nurse appointment - and even a referral to a Falls Clinic who can advise on measures you could take?
Are you drinking enough? Fluids in general that is - not alcohol! Dehydration is a common cause of the wobbles. So is a low level of vit D in the body - that should be checked. And is it all the time or just when you change position?
I can feel your tiredness in what you write. Around here the chemists will deliver our drugs, perhaps you should check to see if they will do it for you. Then at least the energy spent carrying that bag could be saved for something else.
Hi valentina1, like dorsetlady says mention the dizziness to your gp.
Meanwhile try a frame. It's something to hold onto to get up. You can leave it if you feel OK then. Most people stand up and stride out in one movement. Make sure you stand upright slowly and stay for a count of 10 or until the dizziness has gone. I hope you feel better soon. Its been horrid here too and miserable with the rain. Forecast a nice week in my part of UK. Cold but sunny. Hope you get sun too. 🌞🌻
I have a pair of Nordic walking poles which help me for balance and confidence while wobbly.
They are also good at prodding things or using to grab something a bit further away when I'm tired.
The Fatigue can be awful and trying to push past it isn't the same as trying to get over being tired. You have to do things but a little with plenty of rest .
I get my prescriptions picked up from the surgery for me , my friend books the Pharmacy delivery , it's well worth it , and they will wait for you to check it so that if there is a mistake they will take it back and exchange it for you , which saves stress and time.
I also get my main shopping online to save struggling with bags and trolleys and tiring myself in the supermarket.
People can start to have extra Fatigue from 7 mg , but more commonly between 6-3 mg because of Adrenal Function changes , it can take time for the Adrenal System to start working again , even on the lowest doses , and you can be in Remission and off steroids altogether for up to 6 months - to a year before the Adrenals and your General Body Fitness is 100% . Pacing and gradually building up your activities and using the new life balance you needed to learn of rest and activity while having GCA/ PMR to best effect can be the most helpful thing in coping with Adrenal Insufficiency or General Pain and Fatigue in the future.
The most important thing is to be patient, stay positive and search for the silver linings in even the darkest times with a long term illness , keeping away from Stress and maintaining good Mental Attitude is often the only thing that can help get you through and it helps you succeed with your recovery.
There's nothing I haven't done with my crutch....... from clearng leaves in off street drains to rescuing balls and friends from the otber side of a fence. 🌞😁🌻
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