I haven't posted on here for a while. I am now on 6mg Pred for GCA (down from 60 mg in 2yrs 5 mths). I get some head pain (especially when I am talking a lot) but determined to try to get back to 'normal', whatever that is to be.
I was living with my parents and helping look after my dad during March - Dec and didn't attempt a reduction. Life was stressful with dads dementia and no work and then he died just before Christmas. Adapting now with my mum and determined to try to get off Pred. My skin is wafer thin, my hair the same, memory and mental focus is fog like and fatigue every day.
I dropped from 6.5mg on Christmas Day to 6 mg. I know the tapering regime but can anyone give advice on adrenal re-boot or any supplements, regimes or otherwise to improve energy and help mood swings. During the last 2 years I have suffered from mood flare ups from almost not caring to rage in a moment. Exercise (yoga) helps (I am an x dancer) but still recovering from bilateral tendinopathy so long walks are still out.
Any help, no matter how small is gratefully received especially for fatigue, memory and mental focus. Thank you so much.
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Fieldofdreams
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You have had such a challenging time and you have lost your dad in a cruel way. I can see that your own needs have had to be sublimated for those of your parents for a very long time. You have every reason to go from not caring to rage in a heartbeat, without the aid of an autoimmune disease, Prednisalone and tapering. All the usual releases, like holidays and seeing friends are shut off to us right now.Can I urge you to seek a good therapist on-line? Many of them are continuing their practice this way. I really think that you have a lot to work through. I have been helped incredibly by this work in the past. Then with any luck you can emerge butterfly-like when this awful period is finally behind us.
As for sleep or the lack of it, we all seem to struggle with this. It is part of our diseases and the side effect of our drugs. I sleep after lunch and go to bed quite early and try to follow the sleep hygiene protocols ( again on the Internet). I have fallen asleep to meditation tapes ( particularly rain) and gentle radio programmes on BBC Sounds. I am not working so I avoid the pointless panic about lying awake at 3.30 am. It doesn’t matter. The fatigue does linger though. Perhaps tendinitis sufferers can tell you what has helped them. Fresh air is a great boon. Take care!
Dear Jane, thank you so much. It has been tough as you say but you just want to do your best for your parents. Pred has given me the 'anger' , lack of patience from the early days, which was a surprise to me as it takes a great deal to upset me. I think it came from me not wanting to talk much because it gave me head pain and I got impatient therefore if people wanted long conversations I would get short tempered (I didnt tell many people I was ill, being self employed it was too much of a risk). It took me 12 months to be able to deliver a lecture pain free. I have just got an online (zoom) therapist who I am going to chat too. You are right, there is a lot to work through but my mum is amazing! She accepts there is / was nothing we can do to change the situation. I will follow your advice too on sleep. Which varies with me. Thank you so much for being in touch. All best wishes
Just a thought, you said you get a head pain when talking a lot. Is this because you use your jaw a lot when talking?
I would not be dropping till I got to the bottom of what is the cause of the 'head pain'.
Both head pain and jaw pain are symptoms of GCA. To get down to 6mg in two years is fast and as those could be the first signs of a flare, you should talk to your GP and/or Rheumy.
There is nothing I know of which can help you to 're-boot'your adrenal glands - however once you get down to 7.5mg and below you can ask for a Synacthen Test. However, some Endocrinologists won't do that test till you are 5mg or below. Remember it can take up to a full year once you are in remission and no longer taking pred for your adrenal glands to get up to full speed.
Take it slowly and don't rush you have had to deal with a lot of stress and worry and neither are ever good and especially when you are not in good health.
Thank you jinasc. I have always had some temporal pain and they has put it down to 'stress' and worry. I do put myself unwittingly under pressure as I have become anxious and lost my confidence since getting GCA and being on prednisone. I cant afford to stop working (none at the moment) and I love it too, when it's there.
So sorry to hear of your father's death. I won't say it will get better - but it will change and be easier to live with.
The only trigger to get adrenal function back is a low enough dose of pred - whatever you may read, there are NO supplements or regimens that will do anything more. One very good PMR rheumy likes to keep people at 5mg pred for up to 9 months - enough to avoid the worst fatigue but low enough to stimulate adrenal function - and he finds the rest of the journey tends to be easier.
Thank you PMRpro. I guessed as much but it's good to get advice from you and others. I would simply love to have a clear head and enough energy for a day!
My advice would be not to fight the fatigue and take life as gently as you can - warm baths in the mornings, some gentle yoga and walks, naps in the afternoon all work for me. I have tried vit d3, k2, hemp tablets, aloe Vera drinks, Bowen therapy, acupuncture - was important to me to try to take some control. Also keep a diary where I note my feelings - physical and emotional. Latterly, meditation has also helped but just be kind to yourself
Thank you Arflane, I will look up about Bowen therapy when we get out of lockdown. I will do more yoga too as I am not as disciplined as I should be. Best wishes
So sorry to hear what you’ve been through : I’ve suffered from mood swings and brain fog and I haven’t been through half what you have . Also the sleep deprivation - Prof Dasgupta was so concerned he prescribed Amitriptyline but now I’m down to 5/51/2 I’m so much better, ( I was given a pillow mist which might have helped). Having said all this, best not to ignore the head pain? Good luck, God Bless
Thank you so much Maisiek. I was prescribed Amittriptyline too for my achilles and they did help my mood but didn't want to use every day as I was frightened of getting addicted. Some nights I use lavender oil on my temple and when I feel a bit down I add a bit of peppermint as well which is quite nice. Good luck and God Bless you too.
Hi , so sorry for your loss . I take Amitriptyline . I take one at 7 in the evening. It really helps at night. I have had them before, they defiantly are not addictive . Hope this helps , be kind to yourself. Things will get better x😊
You have been through so much and your father's death is a huge hurdle plus all the preceding months of stress you had to endure in addition to supporting your dear Mum.
I think all of the advice you have been given from this wonderful forum is absolutely right!
Be kind to yourself now. Apart from continuing to support your Mum, accept that stress is a very real trigger in our condition and try to relax as much as is possible.
Know that we are all here for you at any time with our love, understanding and support.
Thank you so much for your kind and thoughtful reply. It has been so good to hear other peoples experience and to share mine, it is comforting and reassuring. I've always been impatient but with your own health I guess you cant be. Thank you for taking time for me and I hope you continue on your taper well. God Bless and peace to you.
I feel for you hugely, I also have GCA & like you have experienced so many horrid side effects - but I have not had also to cope with caring for parents & subsequently your fathers death, exhausting & stressful on its own without the dreaded GCA thrown in.I am nearly 5 years down the line & am still on 6.5mg & still experiencing huge fatigue, keep trying to taper using the very slow method but can’t get any lower without symptoms coming back. So you must take it very slowly, be very kind on yourself (if you can), rest ( I have to confess I still take a very low dose of sleeping pill otherwise I don’t sleep & then feel terrible), try to exercise, be it gently, v important because pred is quite wasting on the muscles. I also get headaches if I talk too much to friends which is miserable.
The advice from others on the forum re adrenals is spot on, I have seen a leading Endocrinologist in Oxford who did give me a Synacthen test which showed zero adrenal function, so hopefully when I get to 5mg something might happen!
Thank you so much for your lovely message and gentle advise. It is very comforting to know there are people who understand when u are battling this GCA. The talking is the worst as I put brakes on my socialising. I keep saying to myself it's not forever. God Bless u for taking time to reply love and peace to you.
Hi Fieldofdreams. I just saw your post. I am new to this forum and I just recently posted my full story. If you have the time to read it you may get some help from it. Your fatigue problem jumped out at me. Very briefly I am now off prednisone 18 months and making good progress having being on it 22 months. It takes lots of constant effort but from reading your post and you being an ex dancer this should not be a problem for you. I wish you all the very best and success in your efforts to beat this ‘not to nice a condition.’
OH, what a hard time you have had ! After 2+ years, I am down to 2.5 ng of prednisone. All the way I have suffered afternoon fatigue and had to come to accept it as part of the process. Walking with Lily in the river park is calming to me, I too have had to curb my impatience with others. Also a caution to not overdo, I recently bought a foot peddler hoping to increase muscle strength in my legs and became too active with it the first couple of days. I could think I was having a flare, but believe it is the result of being overzealous with a new "toy," As a very active person, ex competitive runner, tennis and pickleball player and mountain hiker, it is very hard not to want to force the body to work as it used too. Sometimes I know I become foolish due to frustration, but just have to dial it back. Lots of luck for your coming "journey.
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