Think I am crashing....

The problem with me is I have always had huge energy and brain firing all cylinders and ignoring the guidance from some of you on here re prednisone and ups and downs I think I have just hit the wall and maybe a slow burn coming my way.

Been fine first week but as soon as I reduced down 1 pill every 3 days (tomorrow down to 1 pill for 3 days) all the pain is slowly coming back and where I thought I could do anything has now come back to haunt me.

So taking slow tonight and work till Tuesday will need to be slow but then back to Doctors on Wed as even my breathing is feeling wrong and I know my BP feels high.

'Damn girl you gotta learn the hard way'........note to self.

Pills chocolate bed.

[Deniseelk]

I suggest you speak straight away to whoever prescribed the Prednisolone ( Rheumatologist?) as it sounds like your not ready to drop down just yet as it sounds like the inflammation is still active and possibly causing you the fatigue. Don’t delay as I am sure you want this course of steroids to work for you. Also, you have already intimated that you have been doing a lot as it’s made you feel good ( masked the fatigue ... I know exactly what you mean as tend to do the same)! I would really pace yourself and let the steroids do it’s job, frustrating I know but in the long run you need to inflammation gone! Possibly the inflammation was more or more inset than your Rheumatologist knew and maybe a stronger starting dose of steroids was needed, or you need them for longer! Hope you get it sorted soon.

[mrdiggs in reply to Deniseelk]

I AM ON PREDNISONE EVERY DAY AND HAVE BEEN SINCE DIAGNOSED 7 YRS. AGO. ONLY A LOW DOSE-2MG. PER DAY ALONG WITH 7.5MG. MXT. WEEKLY.I HAVE TO GO ON HIGHER DOSES WHEN I FLARE. PROBABLY SHOULD BE ON MORE BUT HAVE HAD SEVERE LOSS OF HAIR ,DON'T KNOW FROM WHICH DRUG. I TOO HAVE BOUTS OF EXTREME TIREDNESS AND WEAKNESS. VERY ANNOYING BUT THOSE DAYS I JUST REALLY TAKE IT EASY, PACE MYSELF AND TRY TO SLEEP A LOT. IT'S ABOUT THE ONLY THING I CAN DO. HAVE ALWAYS BEEN ENERGETIC BUT THIS CAN KIND OF STOP YOU IN YOUR TRACKS AND YOU DON'T HAVE MUCH CHOICE. THINK OF THIS AS THE NEW NORM AND JUST KEEP ON TRUCKING. WITH RA YOU NEVER KNOW WHEN THIS CAN ALL CHANGE FOR A PERIOD OF TIME AND THEN IT WILL DO SOMETHING DIFFERENT AND YOU JUST HAVE TO ADJUST. KEEP THE FAITH !!

[Hidden in reply to Deniseelk]

Hi Denise, I have not even seen rheumy yet my local GP got me on it as flare was like a wild fire raging thor me 3 weeks ago and I wa sfalling apaprt over my bpdy so he gave me this to keep me sane until the consult appointment came thro. 10th Sept is now booked and my GP told me I was sever RA and sero neg.

[Deniseelk in reply to Hidden]

It sounds like your GP needs to know the Prednisolone is not doing it’s job at this stage. I have a Rheumatoid clinical nurse with a helpline. If I have an issue I can call anytime ( answerphone) and they get back within two days. They have listened to my issue ( usually a flare) and posted a prescription for Prednisolone so I can start it quickly. I wonder if this is available to you? Don’t suffer on... ask for help.

[Callabag64 in reply to Hidden]

Hi Deeb, so sorry that you are suffering at the moment, when I first got diagnosed I thought I would end up in a wheelchair, did not know much about RA at the time, and still finding things out, but there are some good biologics out there that can help you lead more or less a normal life. There may be tough times ahead, but there is always someone here willing to listen when you need to let it all out. We are all on the same journey. Take care and hang in there .

[Hessie5]

Hi Deeb - it’s all part of the prednisone trap - you feel invincible. I was good on it for the first month then the inflammation gradually crept back.

As soon as your biologics kick in you should start to feel better.

I have been using paracetamol as my first point of call for pain (at times Ibuprofen). Alongside my biologic.

I am finding gentle stretching exercises from YouTube very helpful to alleviate the dreaded morning stiffness in feet and hands, as well as managing stress and relaxation. (Alongside dairy free chocolate for me 😁)

Take it easy 😌

[Gnarli in reply to Hessie5]

Deeb hasn't had the first rheumy appointment yet, Hessie, so is unmedicated except for pred.

[Hessie5 in reply to Gnarli]

Thank you Gnarli.

[Callabag64]

I am very similar to you, not a sit down and do nothing person, hubby says I am my own worst enemy, but these last 2 years has taught me, that I have to rest and take it easy, and that I can no longer be me .

[Hidden in reply to Callabag64]

I want ot be me still not liking this no go crap this week. My brain and body having a tussle or 2/3/4 and even though everyone pre warns you about he battle its like a moth to the bleep flame!

[Hidden]

Thanks all I know stuff happening as I am not right so Wed is the day to see Doc and see what we can do . Trying to stay sane thro this bumpy journey.

[Gnarli]

Many sympathies to you Deeb. I reckon most of us here have been exactly where you are now. The frustration is real and I'm sorry