sooooooooooo----Prednisone, GCA and Actemra all thave dizziness and lightheaded, as a side effect, then throw in PMR and fatigue, no wonder I feel like awful most of the time. ---I'm currently at 50 mg, and if I only decrease 5 mg a month it will take me forever to get low enough to get rid of these side effects---good grief!!!
I give up!!!!!!! discouraged: sooooooooooo... - PMRGCAuk
I give up!!!!!!! discouraged
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pwalker801
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Hi
It will get better
WE all have bad days Sunday and Monday where mine I got up just did not feel right and thought I cant do this anymore .But i have no choice so just had to get on with my day and as it progressed felt better .
Just be kind to yourself
thanks Rose54, so appreciate your post
Yup, that’s about the size of it. I do feel for you. My only way through was just accepting it and stop looking for the door to open like a dog waiting for release. Embrace the grim, rest, eat low carb food and keep moving gently in between naps. I used to wake stupidly early, so the dawn chorus with a cup of tea became a treat. I got through half a day at a time with lots of naps. This was difficult having gone from ‘normal’ with a job to nothing but a bunch of symptoms and Pred mania at 54. Whatever, you do, don’t be tempted to drop too quickly just to make it stop because you can end right back up there. At that dose level, I dropped by 2.5mg because the withdrawal was too much with 5mg, but you’ve got Actemra as well, though that does work differently.
I suspended normal life, gave up work, just to look after me, apart from keeping the plates spinning dealing with a miserable ungrateful father-in-law who lives with us, two teenagers and a husband all of whom have various pick and mix of Tourette’s, OCD, anxiety and depression. Complain here, read the humour and know it’s slow but IT DOES GET BETTER.
Snazzy D thank you for mentioning all you have to deal with in addition to PMR:GCA, (family issues etc). I’ve complained about some other problems and felt like I was whining. Thanks for telling about how you made it through.
You suspended "normal life", I haven't done that--at least emotionally, and could be a lot of my problems, and the taking care of "me". Your post gave me a lot of food for thought, thank you!
Things didn’t feel better until I stopped fighting and clinging on to my old life. I have grieved though! As I’ve said before I don’t consider acceptance as the same as giving up.
DorsetLadyPMRGCAuk volunteer
Hi,
I know you feel rotten at the moment, but I promise you it will get better. As your body gets used to the drugs and you get lower then the side effects will subside.
Are you in pain, real PMR/GCA pain anymore? No, well that’s a positive.
Are you in danger of losing sight without drugs? No, so that’s another positive.
Mark this post and read it again in six months time, and I’ll bet you think - was I really that bad!
thanks DorsetLady, I'm holding onto the promise it will get better. And no pain and still have sight is a definete plus.... and I'm thankful, very thankful! appreciate your posts so much, thanks for being so encouraging.
I promise you it will get better!
Maybe not tomorrow, maybe not next month, maybe even not next year......but it will eventually.
Just hold on to that thought!
...but you just cant help laughing at the absurdity of it all, can you?
That is of course, after you get done screaming, swearing and ranting about how horrible, cruel and unfair it all is!!!!
Yes, indeed... no wonder you feel like crap most of the time! You have been thrown in the ring with several big brutes and they are kicking your ass! ...but as SnazzyD said "Embrace the grim." Submit. Relax. Breath. Inhale. Exhale. Rest. Rest. Rest. This to shall pass.
I was on 80mg and thought I'd NEVER feel like me again. Thought I'd NEVER get low enough to get rid of side effects and withdrawal symptoms.
...but look at me now! I'm on 40mg and feeling okay! Good, in fact! You will get there! Don't give up. You can't give up.
Check this out... it was written on February 16, 2018.
rantingsofamadwomanblog.com...
pwalker801 in reply to
love the Demons & Self doubt---thanks, reading it put my feelings exactly into perspective---I knew how you felt, because that is how I feel.........
in reply to pwalker801
...but the important thing is that these feeling pass. We work though them. We get past them. Depression, the Pred and the illnesses all play with your mind and trick you. That is how I felt in February, that is not how I feel now. Have you decided what you are going to do?
We all get feelings like this I do empathise. When I was on holiday on the Greek Island of Hydra I had to climb the winding path of a cliff to my accommodation. Little donkeys were packed with luggage and would make the laborious trip several times a day. I always think of their stoic, sad little faces as they stumbled up the rocks. I tried to get into their mindset and just put one foot in front of the other, not thinking of the destination, just the next small step. It helps, you get there, slowly.
in reply to SheffieldJane
Ooooooo, that is both sad and so beautiful at the same time.
Beautifully expressed.
Reminds me of the person who in middle age was pondering going back to school to train as a doctor, and saying to a friend, but think how old I'll be by the time I graduate and the friend remarked, you will be the same age then whether you go to med school or not. Your journey continues whether you wish it to or not. You, like all of us, have been press ganged onto a ship sailing into the unknown. But, as Mamici says, there's not much else we can do but embrace the situation. Who knows what precious harbour this unwanted journey will lead you to, even though right now you are in the midst of a seasick-making storm? Know that you are not alone. You are in the company of many other reluctant travellers!
what a great analogy, thank you, I've printed your response as a reminder
---and "your journey continues whether you want it to or not"---gave me a moment of pause---you are so correct, in retrospect I can see where I've been dragging my feet in the mud and mire.... so appreciate this site and all the encouraging words........
PMRproAmbassador
Not forever - but you have a serious chronic systemic illness. It WILL get better and in a year you will look back and see how far you have come. I know that sounds awful - but I'm afraid that is the reality and there is no way to gild the lily.
And unlike most of us - you have the option of Actemra which will speed the process up considerably.
I know, you are so correct---and generally I can self talk myself into being positive--not sure what happened this time..... thanks so much for the encouraging words.
pwalker801,
I started at 60 mg with GCA and PMR and felt just as you do now. I am down below 10mg and life is much better but I believe we have to adapt and make the best of it. It took me two years to get below 10mg but in that time I learned to enjoy my many naps. The "awful" feeling does get better, it just takes time. It is difficult but you can do this! This forum has been a great help to me.
EI
enan-illuc, Thank you for responding and the encouraging note.... This forum has been a great help to me also. and I'm going to look at those rest times (naps) in a different light now. Thank you!
When I was a teenager having a rant about something an uncle gave me some advice which has stayed with me “to enjoy your life you must first learn to flower where God has planted you”
Speak to your Consultant about it - a different regime may be necessary to start with!! Do.NOT just suffer - get help x
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