Prednisolone STILL not kicked in

[Deniseelk]

Follow on from yesterday’s post.... day 4 Prednisolone and still no benefit. It has always worked instantly and made me feel full of energy.

Still getting horrendous morning arms / wrist / hand pains lasting many hours and hands very seized and can’t do much with them.

Feel little spaced and big wobbly on feet ( but that side is quite manageable).

They have given me a different brand . Could this have anything to do with it? At what point do I question if “ something else” is going on? I did have two steroid shots directly into one finger back in April and July could this have anything to do with the lack of effect this time? I had been on 250mg Naproxen twice daily for around 10 days but stopped due to starting the Prednisolone, could this affect its effectiveness????

I think the Naproxen certainly reduced the inflammation and any heat has gone but I just still feel so horrid / tired / weak / pains.

Any tips greatly appreciated.... in case I am missing something else going on!

[Simba1992]

If you take the pred at 2 o'clock in the morning ( set your alarm clock) you will have much less pain in the morning when you wake up. This way the pred will start working when your own cortisol starts rising.

[Mistypatches in reply to Simba1992]

Thank you for sharing this Simba, I’d never thought of timing it this way, that’s awesome.

[Simba1992 in reply to Mistypatches]

Made a big difference for me.😊

[Nitrobunny in reply to Simba1992]

Yep yep I really find it makes a huge difference if I take it between 2 and 4am. Everyone is different and I know it takes more time for some than others. I’ve been pretty fortunate in the regard that it takes two days tops for me to notice a change up or down in dosage.

Best~

[Simba1992 in reply to Nitrobunny]

Everyone in this respect is not so different ( usually). Production of cortisol follows a typically diural rythem. When we go to sleep the cortisol level starts decending and is at its lowest at midnight and two in the morning when it starts rising.

adrenalfatiguesolution.com/...

[Deniseelk in reply to Simba1992]

Thank you so much for your help. The attached is very interesting indeed and so related to my situation! Years of extreme stress from some truly awful situations..... trying to “ de-stress” but it is very difficult when some of the stress situations remain.... it’s about changing how I can cope with them. I now have to think if my Rheumatologist can consider my Cortisol levels as a larger picture whilst dealing with my RA flare!!! I plod on but it is making sense why the steroid is not working this time.

[daisychains58 in reply to Simba1992]

Hi Simba do you eat anything prior to taking your pred in the wee hours? I take mine at 8am as told to do by rheumy and eat brekkie just prior. Can’t take it on an empty stomach I’m told. Thanks for any information as your suggestion certainly makes sense to stem the early morning pain and stiffness.

[Simba1992 in reply to daisychains58]

Yes I always take a small snack. Best would be to get the modified reliese pred. You take it in the evening at bed time and it kicks in at 2oclock in the morning. I have tried to get hold of this but they don't have it in France, perhaps in the UK. I think the brand name in Europe is Lodotra.

[daisychains58 in reply to Simba1992]

Ok thanks, I’ll ask GP tomorrow. I live in Australia.

[pd118]

took me 6 weeks before I felt difference

[Hidden]

Pred used to work really well for me, but I have found now that it doesn't work nearly so well and I wonder if it is a case of, the more you have it, the less it works well. I used to get so much better after a steroid injection as well but the last two I have had have made no difference at all to me.

I hope you get some relief soon. x

[Troygirl]

Not prescribed enough!

I am in a 8 week flare where my shoulders could not even be lifted a inch with out wincing in pain.

He put me on 10 prednisone, Did not touch the pain! Then he went on vacation for a week and had to wait to see him for 7 long days. I had videos of each morning of the agony I went through while he was on vacation & he could not be reached. A week of hell!!

He then put me on 15. Two days later STILL no relief. Went back AGAIN! Finally he put me on 20 and have been on that for 4 weeks! Every time I try to reduce to 15 the shoulder pain comes back with a vengeance! I want to get off this prednisone because my face is getting a little puffy. Have been on Humira & methotrexate for 8 weeks as well with NO relief in sight, because I cannot reduce the prednisone which tells me that they are not working!

The Humira I think is making me worse. Every time I take the once a week shot the next day my muscles are soooooo achy. About two days before I have to take it again they feel better. Then take the shot and the cycle begins!

PS. When I first went back in 2017 he gave me the standard course of predinose and all symptoms disappeared immediately as well. There is something seriously going on with my shoulders now and the regular course is not touching it!

I hate this crap!

[Simba1992]

Was the reason for your shoulder pain diagnosed? Taking pred systematicly in small doses does not help if you have a frozen shoulder as an example. Intraarticular steroid injection is used at times with success in frozen shoulder diagnosis. I had it for a long time, it did pass with excersize and patience.

Sorry, answer to Troygirl.

[Deniseelk]

I feel for you. Be a little careful if your face is getting puffy ( Cushing’s disease?). If I were you I would try to get back to your Rheumatologist team ( can you see someone else?) and have a complete review of meds. Have you ever been given a steroid shot? I had bad inflammation in my finger which was ( finally) cured by an ultrasound guided injection. Previously a depomedrone shot in the bottom did NOTHING and first shot in finger didn’t completely work but under ultrasound guidance it did! However, I don’t know how tricky it would be in the shoulder area but surely an ultrasound will show exactly what is going on! Could it be possible it is “ something else” and not inflammatory? A bone out of place / fracture??? Don’t keep suffering....

[Joy_1]

Hi Denise

When I flare I need 20mg Pred to get things moving again. And within 48hrs the Pred has worked its magic . In the past I have tried 10 or 15mg and it has not worked.

7 days at 20mg does the trick for me and I can then start fast tracking back down again.

Joy

[Deniseelk in reply to Joy_1]

Hello Joy, yes I am on 20mg and previously it’s worked it’s magic after day 1! I think a call to my Rheumatologist nurse needed Monday....in the meantime I continue to distract myself ..dog walks, movies / reading / plodding on with little , light household jobs. Lots of help from Hubby this weekend to keep house “ ticking”. Thanks for everyone’s advice and tips...

[Joy_1 in reply to Deniseelk]

Contacting the nurse and distracting yourself sounds like a good plan.

[Angels54]

Hi I had this problem , used to be ok on 4 they increased it to 6 which worked , now reduced to 1 a day . good Luck

[Sandydemop]

Hi

denise, when I took oral prednisone it didn't work until the 10th day! so don't give up hope.

[Nyreedw]

Pred has no effect on me at all. I had a 12 week course during first year of diagnosis and I got worse on it. It doesn't work for everyone. Good luck x