Pred sucks

[daworm]

Hope I get accustomed to these side effects of pred soon, 20mg, often times I think of quitting pred as fast as possible and going with ibuprofen... if I knew I didn't have gca or was not going to get it I'm pretty sure I would opt out of this drug..and people think opioids are bad??

[PMRpro Ambassador]

It does get better - honestly. You won't stay at 20mg forever.

[DorsetLady PMRGCAuk volunteer]

Hi,

As I replied to a previous post, Pred is no worse than many other drugs, and to be honest I don’t think you have really given your body chance to get acclimatised to it. Plus as we all know, and have told you, the side effects do lessen as you lower the dose.

If you think side effects are bad at 20mg, then I sincerely hope you don’t get GCA, or you need a lot higher dose.

(Me: GCA 5.5yrs starting dose 80mg. Remission 1.5yrs)

[jinasc]

Ibuprofen won't control the inflammation and neither will any other NSAID.

So it is pred or .............................and it does get better, give it time.

[1Purplecrow]

You have my sympathy. It looks like you are in the first few weeks of treatment. Those first weeks at highest doses of pred are pretty crummy indeed. The brightest spot is when the debilitating pain eases, and we can move again.

As others have said, thank your lucky stars that there is a treatment that helps manage the inflammation. The risks are much greater if GCA develops from untreated PMR.

Kind regards, Jerri

Me, PMR 4 years, currently on 4.5 pred

[Marijo1951]

I'm pretty new to all this. Started on 60mg at end of July, gradually diminished, but now back on 40mg for three months because of flare-up of GCA symptoms. I definitely have side effects - fatigue inconveniently combined with insomnia, unreachable itching in unexpected places, a rampant hunger, flaked-out forgetting of easy words etc. Also, although I haven't had the dreaded depression, it has certainly had an effect mentally which is very hard to describe. I somehow feel I can see a lot of things more clearly, that have been niggling me for years. It's a bit bewildering at the moment, but on the whole I think this might turn out to be a beneficial side effect.

[daworm]

Thank god no insomnia yet...and the rest you have described perfectly!! Strange stuff this prednisone...

[EmmaLaura]

Separate out the other conditions from PMR/GCA I want to read the PMR/GCA postings. Too sad to read all

[PMRpro Ambassador in reply to EmmaLaura]

What other conditions? There is very little discussed on here that isn't related to working your way through PMR and GCA. They tend not to happen on their own.

[daworm]

Well they sorta run together, can't tell one from the other most of the time..

[cctraveler]

I was started on 20 mg in February 2017. Thought I was going to climb out of my skin. After my first "miracle" dose of Pred, I started journaling immediately, while the horrible symptoms and disability of PMR were fresh in my mind, because I knew that with the prospect of being on Prednisone for at least two years, I couldn't risk becoming impatient and going back there. When the PMR pain goes away, it's easy to forget that the disease process is still present. Read this forum every day, know you are not alone, (and be super glad you are not at 40 or 60 mg or more ...). Slow and steady, you can do it. (I'm currently at 6.5 mg)

[daworm]

I too keep a journal...it's a good idea...I'm glad I'm not on a higher dose, but in the back of my mind I get this feeling that my dr is missing something and maybe I do have gca...he seems to think cuz I don't have headaches I don't have it...every morning reminds me that I still have the PMR...the early miracle of pred has long worn off..my daughter is adamant that I go to some place like Mayo's or University of Michigan medical center for a really good check up...perhaps a good idea!! If someone would tell me "this is what you have and nothing else" I would be really happy! When I have a rough day I have doubts..probably moody from the bloody pred! Haha..hey..good day today, as usual probably did too much..

[PMRpro Ambassador in reply to daworm]

If you don't have headaches and visual symptoms, the only requirement you have is a high enough dose to manage the symptoms you DO have.

In autoimmune disease there is no way you will get a diagnosis that says "this is what you have and nothing else". Or at least - no way an honest doctor will say it. Even if they are at the Mayo or Uni of michigan.

[daworm]

True, but a good medical center or dr. Can rule out other conditions that mimic PMR, like cancers, thyroid problems, a few others..I haven't heard any of that yet and it would set my mind at ease..PMR doesn't seem to be life threatening some of the others are..

[PMRpro Ambassador in reply to daworm]

All of those can be done quite well by an "ordinary" doctor - and are amongst the differential diagnostic workup to be done in PMR. They should be ruled out before choosing the PMR diagnosis.