I heart prednisolone?

Cariad71

Hi everyone,

I know many of you have much experience of prednisolone so hoping you can give me some info. Started it for the first time last wed at a dose of 15mg. I have sero-negative inflammatory arthritis, unknown if its RA or AS really but my predominant symptom for the last few years is sacroiliac/hip/buttock pain with pain in back ribs/ chest (? Feels like where they meet the spine) with odd other joints affected but these tend to come and go. Rheum seems to think I may have enthesitis.

Have had steroid injections before now, including 3 large IV doses at Xmas that only gave me a weeks complete relief.

Anyway, until yesterday the pred was doing nothing for me, but have increased it to 20mg since mon and wow, my SI pain is so much better today! It feels so nice to be in less pain but I'm worried this is a false sense of security and wondering if/how I will ever get off them now! I'm off work sick and after feeling guilty for being sat on my a**e all last week I now have this urge to do everything, housework etc because I'm feeling so much better. Also expecting side effects to kick in soon, have a raging appetite on them. Are there other side effects that come with short term use or are they mostly after long term?

I was hoping I could have a short course of pred to terminate this flare but the more I read of other people's experience it makes me think they're b***ers to get off once you're on them!

Thanks for any advice x

salamander

I was on them for ages but that was because my arthritis wasn't controlled. It took me a month to get off them, this after 4 years, which is not bad, I think. That the rheumy wants me back on them is another story.

Boomer13

Hi;

I think a lot of people have a love/hate relationship with prednisone.

I have PsA/spondylitis and was put on pred early in my disease and stayed on a moderate dose for almost three years. It did not help the PsA much. I didn't know enough then to question the length of time I'd been on it. I have been on it a few times since then to help when the DMARDS weren't working, and have more side-effects now like: pretty severe anxiety/restlessness, puffy face, hair growth where it is unwanted (Gasp- ), some blood pressure issues, and most unwanted was steroid-induced cataracts from my long stint on pred. I have been told it's ok to use for the short-term, ie less chance of developing the more serious side-effcts like diabetes, bone-loss. There is another person who posts on this site who, if I remember correctly, developed diabetes from being on pred. Use with caution and know that it is not controlling the underlying disease, just the inflammation.

It can help with acute inflammation though when other things aren't working. I think most doctors are clued up as to side-effect risk; I was just a bit unlucky getting one that left me on it too long. All that said, I'm about to start another round of pred I really don't like this drug.

Best wishes, enjoy your pain relief, just know you shouldn't stay on it too long.

xxAnna

phoenixoxo

Hi cariad,

It's great that you're starting to experience less pain

When my rheum'ist arranged prednisolone for me, in 2011, he explained it would be a temporary measure. Back then I was in hospital, being treated for an infection, off arthritis treatment, and having the worst flare-up of my life.

My starting dose was 30mg and it kicked in pretty quick. I remember being very hungry too, in addition to feeling hypersexual and severely paranoid! All normal, my GP assured me, and once the dose was decreased things settled down.

Is pred intended as a temporary fix for you too, do you know? I've had problems coming off it, simply because I've had no luck with other meds and if I have no pred I flare like a rocket. At present I'm on a low dose, hoping that my new meds will allow me to decrease until I'm off completely. I do have a few problems due to long-term use, not least osteoporosis, but that's to be expected and when I was diagnosed it didn't come as a shock. My rheum'ist has advised lowering the dose by 1mg weekly, but that wouldn't apply to everyone, of course.

Anna's spot on with 'love/hate relationship' as far as I'm concerned! And salamander, I hope there's an alternative treatment for you.

Best wishes,
Phee

salamander

Thanks phoenix. After various drugs I am going back to a dmard shortly, I think. I'm in a similar position to you. I got cataracts but am pleased with the surgery to correct my eyesight as I don't wear glasses for the first time in years.

dreamdaisy

My name is DD and I am a pred-head. I had a three month spell off all meds so, as a last resort, my consultant prescribed pred. I quickly learned about the joys of a drug that 'works'. :roll: After three years of a small daily dose plus the other junk I sat and listened to my rheumatology nurse telling me about it and what it does to the entire body. I devoted 2011 to coming off them and despite some severe stresses in general life I have not resorted to them to tide me through.

It is a useful short-term drug but it does not help in any meaningful long-term way. It cons us into thinking things are better. Of course you can feel a difference so enjoy it whilst it lasts - you're on the up-side of the arthritis rollercoaster and that's always pleasant! DD

Cariad71

Thanks to everyone for their replies,

I'm at the beginning of my relationship with pred, a 'honeymoon period' I suppose! It's useful to have a realistic idea of what it actually does/doesn't do. I am definitely enjoying less pain but worrying at the the same time about the fact that nothing is actually doing anything for the arthritis at the moment and I could be relying on these for a while...

Phoenix, I'm currently off methotrexate to try and have a baby soon but no idea how the whole thing will go
Trying them until I see rheum at end of the month to discuss things further

Xx

salamander

I believe your joints are protected by the pred to some degree, so don't think they are 'doing nothing'. This is an important benefit but not necessarily widely known.

Boomer13

I think you are right salamander. It can even put some people with early RA into remission, I've read.

I'm biased because despite being on it so long, it did nothing much for my PsA. Good that it works for some Maybe you'll have really good luck with it. I hope so.

phoenixoxo

salamander wrote:

Thanks phoenix. After various drugs I am going back to a dmard shortly, I think. I'm in a similar position to you. I got cataracts but am pleased with the surgery to correct my eyesight as I don't wear glasses for the first time in years.

You're welcome, salamander. It's great that your surgery went so well and I hope you'll find a DMARD that works for you

phoenixoxo

Cariad71 wrote:

Phoenix, I'm currently off methotrexate to try and have a baby soon but no idea how the whole thing will go
Trying them until I see rheum at end of the month to discuss things further

Xx

Well, enjoy the baby-making!

As for the 'doing nothing' concern, I've received mixed information here. The specialist rheumatology nurse tends to tell me that prednisolone 'just masks the symptoms', but my rheum'ist has been a lot more positive. Here's a link that may be useful – it's an RA site, but the rheum'ist says it's relevant for me as PsA's also an auto-immune type of arthritis: http://www.nras.org.uk/about_rheumatoid_arthritis/newly_diagnosed/which_drugs_are_used/steroids_in_rheumatoid_arthritis.aspx

Best wishes,
Phee

Cariad71

Thanks Phoenix, will try

Feeling pretty good on the pred now, that might change when i face the challenges of going back to work next week though :roll:

it seems they do think they do something for the long term damage, still hoping they might put me into remission for a while but maybe asking for too much?!

crabby85

Cariad, today i too have been prescribed 15mg of this drug to start as soon as i pick up my prescription.

I can relate to your post, I had a steroid injection that also only gave a weeks relief (10 days to be exact) but my pain is mostly in my hands/arms/wrists. (but also in my legs & feet!) the Rheumatologist thinks i have the beginnings of RA.

I too am worried about the side-effects.

We shall have to wait and see! x

Cariad71

Good luck with them crabby. Are you on anything else at the moment? I think they are more effective when combined with DMARDS but I'm just taking steroids, etoricoxib and co-codamol at the moment.

They took a good week to kick in for me properly and I had to increase to 20mg, I was told to try and reduce back to 15mg after 5 days which is what I'll do tomorrow. Hoping that doesn't mean I flare again.

Haven't had much in the way of side effects yet, maybe haven't had them long enough. I have been thinking about food all the time though , maybe the steroids are just an excuse! I haven't actually put on weight but its only been a week. Also, I'm feeling more positive generally but I'm sure that's mostly due to less pain. I did have a few tears last week, and a giggling fit at 4am one morning when my husband said something to me in his sleep. I'm not sure if I can blame these erratic emotions on the steroids!!

Take care xx

fortuna

Hi,

i started on MTX on the 28 January and Pred on 31 Jan. My right hand was swollen almost beyond recognition and my toes were affected just before I started on anything. Pain so bad I could only walk on my heels. The effect of the Pred was almost instantaneous (20mg). I dread two weeks today when the Pred finishes. Just have to hope that the MTX is working well by then.

There is one redeeming feature to my problems I am 71 and it could have raised it's ugly head a lot earlier. I read of so many of you in the prime of life with young families so I do try to count my blessings.

Hope things will go well for you,
Cheers, Fortuna

fortuna

PS I hadn't realised that I am suffering from increased appetite too!

crabby85

im also taking diclofenac but it doesnt seem to do much for the pain.! x