reducing steriods quickly feel awful cant breath ... - PMRGCAuk
reducing steriods quickly feel awful cant breath and have little energy. Get sweats on moving and wheezing does anyone else feel like this.
Hi Adelle,
I don't know what your present dose is or how much your drops in doses are, but, even with small drops, these side effects sound very familiar. Below 20mg these side effects happened to me, and I have only dropped by 1mg at a time between 20 and 10mg. Below 10mg I have only dropped by half a mg and I have still experienced the same nasty feelings. When taking steroids I think these effects can happen. Don't think you are on your own. The nasties go away for me after about 2 weeks. On the 3rd week I drop again and the nasties come back. I just pace myself as much as possible.
Pats.
PS. I'm now on 7mg and I over did it today and got complete "burn out".
My steroids havnt been reduced I'm on 40 mg and I go into sweat for no reason some times it's like turning a tap on
Steph
Morning
This is so horrid for all of us, but the one thing we all seem to have in common is side effects, it's trying to find a way to manage them, and that is not easy. I hate giving in...
Mt GCA/PMR started 4 weeks ago and what a rocky road, started on 60mg steroids and down to 55mg at the mo - got CT/MRI booked next week, Maxilofacial consultant this week and nothing is resolving. On dihdrocodenine 90mg which still barely controls the pain, plus paracetamol 4 hourly, and all the rest of the meds on top. Docs wanted to start me on morphine on Fri, but I declined because I want to still be able to drive and work..
Just seem to end up taking one tablet to conteract another, does not help as have Rheumatoid Arthritis too, so on meds for this, inject with MTX weekly and take all the related meds to keep that under control..
Oh poor me - NO, I am one of the lucky ones, brilliant husband, great family and friends, GP who is so understanding and a Consultant (RA Con), plus Nurse Specialist who actually call you back and are active in getting this sorted. So yep, loads of pills, quite a bit of pain, sleepless nights - but I'm alive, and the sun is shining, and a BIG SMILE and positive thought goes one heck of a long way.
Oh forgot - also have 2 very sensitive cats, who just seem to know when a need a cuddle!!
Happy Sunday everyone.
Hazel x
Hi Hazel, You amaze me when you talk about driving on such a high steroid dose!
I have been waiting for DVLA approval for 7 months now and I'm down to 7mg/day.
Not banned from /driving,/ but advised to wait for DVLA approval for various reasons not to mention car-insurance, but better not to go into that. When you login to DVLA website they offer forms to download & indicate that it is necessary to report single-sightedness, so I did, having lost vision in 1 eye last January. After 2 eye-tests I am still waiting for a decision, so still hoping for the "official" go-ahead. They said my license was still valid, but always cover themselves by saying their medical team's advic. Is forthcoming! My reduction regime is 1mg/month so hardly notice it at all, but get less unsteady each time, so I look forward to it! Guess we are all different, but I have to balance my steroid with my bp-reducers or find I get too low. It's a learning exercise, that's for sure. Good luck with it & take it easy! Ray
Hi Adelle, you don't say why you are reducing quickly, to me and my GP that's never been a good option. I've taken four years to get from 40mg, albeit up and down a few times, but now down to 5mg. I dropped my dose by 5mg every couple of days such as 40mg then two days later 35mg then two days later 40mg and so on... Eventually dropping by 1mg. The GP and rheumy was insistent that the dose was reduced slowly as steroid is a powerful drug that affects your body so your body needs to re-adjust. Hope this makes sense?
Please go back to your GP or Rheumy or nurse and explain what you are going through and ask for a programme to re-adjust. I have not got family at home to help but you are never alone on her as I have found out.
Please take care and rest as much as possible and keep talking.
Dibs.
Hi Dibs
My Rheumy and Dr have both advised I come off quickly as they were causing lots of side effects and I never felt well even on a high dose. The only thing I did not have was the painful joints now I do. The headaches are controlable at the moment with pain killers. The strangest part is my eyesight has improved. Its the lack of energy and shortness of breath that I am finding difficult to deal with. I would love to rest but I have to work and my job can be mentally draining as well as physically.
Here is hoping that things improve
. Thanks for your answering.
I believe that the effects you are having now are due to the steroid reduction. I was put on 30mg and I could move and had limited strength, but I had side effects. Most of the ones that you have now.
The fact that you are able to work makes you a star! I couldn't have gone there.
For many folks pred takes away the awful pain and stiffness, but gives back aches and pains and that feeling of drained strength.
It got much better for me on the doses below 10mg, but I still get side effects. They are not as severe as they were.
I wish I could be of more help to you. Just think about those head pains. If they get worse---------get yourself to your nearest A&E.
Pats
I've been on 60mg for 3 weeks and my GP has reduced it to 40mg one day ago. I had been feeling very unwell but today I am feeling much better, so the big drop doesn't seem to have hurt me. I got right down to 7mg last year from 20mg but then PMA flared up again and now GCA.
Hi Adelle, I can see now why you are coming down off steroids so quickly if they are not helping you feel better. As you say the side effects are horrid and if you are doing ok then good on you.
Great news about your eyesight, mine has deteriorated so much that I can no longer drive but a taxi to work, a bigger screen and text and a proof reader and I'm good to go.
I know it's not easy working with awful illness but I meditate daily, even 5 to 10 mins just to control my breathing, stress and pain. I find it helps me to focus a little.
Wishing you all the best and hopefully an imminent improvement.
Hi Dibs Just thougght I'd let you know that am going back to doctor tomorrow as pain in head is becoming unbearable, normal pain killers not working and ache in every joint. Am not sure which is worse the pain in head joint ache or side effects.
Oh this is such a mystery you think you've licked it then bang worse than before.
Oh well tomorrow another day got to be a god one.
Hi Adelle, I'm sorry to hear this but please go straight to A & E or call the doctor out if your headache is unbearable especially if your eyesight starts to become affected, don't leave it until tomorrow. I'm not trying to scare you but the sooner it's treated the better the outcome. Please don't think that you are bothering them, like I did, this can affect your eyesight like it did mine.
I will send you my thoughts for a speedy recovery, take care.
Dibs
Hi Adelle, you have been on my mind all night and day, how did the doctors go? Hope you're feeling a little better?
Dibs
Hi Dibs Thanks for thinking of me. Had bloods done again and been put back up to 20mg pred's. Have to go back and see Dr on Wednesday to see how I am doing and for blood results.
Don't feel as bad as I did yesterday, still got headache but will get there.
Got to ask maybe I am being a bit daft but does your head ever feel like it is on fire inside. That is the only way I can explain it.
Adelle
I'm so glad you are being looked after by GP and that you feel a little better.
It's not daft at all and it's hard to describe, it's like a little river of hot liquid running down the inside of my temples and through my head with short bursts of hot lava like a volcano going off. Then I just want to put my head on cotton wool because it hurts so much, but sometimes I want to put it in a vice to stop the pain.
Please take the time to rest and let the pred do it's job and hopefully you'll feel better soon.
Dibs
Yes, i have exactly those symptons, In a way it comforting to know what is causing all these symptons and pains, but very frustrating not knowing what to do about it. I have only just found out about this site and that there is such a lot of information about it. It is answering an awful lot of questions i have been unable to get answers for before. Have only been on preds since March 2012 after spending many years trying to sort this problem out. This was because - at last I found a Doctor who was prepared to listen and seemed to know what I was talking about. I started with fybromyalgia in my 30's, (not recognised then) I am now 76yrs and have finished up with polymyalgia and Temporal arteritis (gca) I am not giving up tho'..
Hi Beatrice
I really don't know how you have coped all these years with this. I certainly admire you.
to day I am on what I call a bad day as head hurts. Steroids back up again but pain in temples not good but tomorrow will be better.
It must have been awful not knowing what was wrong. At least we do and have our questions answered.
Adelle
Hello Beartrice,
Listening to your story makes me feel very humble. I have had PMR for nearly 2 years now, since December 2010, and I often think that life has given me a hard deal. Like many of our members, I struggle with the battle that goes on in my body between both the side effects of steroids and PMR. I suppose I forget that, until this illness reared it's ugly head, my body danced through life doing what it was told. How lucky was I?
You, like so many of our members have not had this fortunate past. You have endured years of suffering and misunderstanding by doctors. I wonder how many of them have dismissed you as just a whinging nuisance? Fibromyalgia and PMR/GCA can be very lonely illnesses, and I wonder how often you must have felt abandoned and desperate.
Thank heavens you have found a doctor to help you and now you have come to PMR/GCAUK.
It's so wonderful that you are still up for the fight, and now you have many friends to help you through it. Welcome aboard!
Pats.
Dear oh dear those steroids. I started on 7x2 0.5 mg when I had gotten my diagnose last July. My blood (do not know the anglosaxan) went high up. Then my Moon Face appeared, not pretty. I was down to 2x1 0.5 mg then it hit me again. The blood weznt all wrong so so UNTIL next Tuesday it is 2x3 0,5 mg. The doc will be im touch om Thursday via phone and see wheat happens next.
Good luck to you all and sleep tight
