Differences in corticosteriods?

[SanRaphaela]

I am new to this group and to my PMR diagnosis. I am only 48 and it has been quite a stunning diagnosis to deal with. I am feeling quite well - no pain now, although I am often extraordinarily tired. My main challenge is the cushinoid symptoms I'm experiencing. My face, my neck, my back and collarbones have all be significantly impacted in just 5 months. I've changed my diet to an AIP protocol since the diagnosis and that seems to have limited the weight gain to 4 pounds. But the visual appearance changes are still significant. My question is this -- I'm on methylprednisolone -- could prednisone or a different corticosteriod help my symptoms? I was started on 16mg of methylprenisolone and I'm now down to 9 (the 4mg pills have to be cut to work this process, but it has worked). I try a step down about 1mg every 4 weeks. I have little trouble sleeping, no anger symptoms and I'm not hungry. In fact, I have less appetite. So it seemed, initially, staying on methylprednisolone was a good choice. But the cushinoid symptoms have really got me feeling down. If a different corticosteroid would be better, I'm game. Any insight would be most welcome.

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

I’m sure you are in shock, you are on the lower age spectrum for PMR.

I don’t think there is much difference in any of the side effects of the different corticosteroids, after all the basis ingredients are similar. Have a look a this -

mayoclinic.org/steroids/art...

As you can see fatigue can be a side effect, but it is also a factor of PMR, so a double whammy really. However, you have to do you bit as well, by pacing yourself. Just because you may feel better, your PMR us still there causing you problems.

This may also help you understand your illness a little better -

healthunlocked.com/pmrgcauk...

[SanRaphaela in reply to DorsetLady]

Thank you so much for the response and information! I'm very grateful to have found this group.

[Marilyn1959]

Hi and welcome. I am sure you are feeling devastated to have this condition at the age of 48! I felt hard done by when diagnosed at 57. I really do empathise.

The side effects of pred do start to kick in after a couple of months and those look different for each of us, but pred face is a pretty common side effect. I can now spot when someone is taking steroids a mile off!

The saving grace is this condition is not terminal and the side effects are transient. (Though that thought did not stop me panicking when I developed a buffolo hump over night!)

I want to reassure you that these side effects do go away. The buffolo hump lasted a couple of months in my caseand the pred face disappeared at 7mgs. ( Interesting that it comes back as soon as I go to 7.5mgs, so I try to stay below 7mgs.) The swelling at the side of the neck comes and goes, but is strangely a useful indicator as to whether I am going to have a good / bad or indifferent day.

Rest assured these things will and do pass.

[SanRaphaela in reply to Marilyn1959]

I'm so grateful for your reply. I know this side effect isn't terminal, but it sure does help to have someone else who has experienced it assure me it will go away. I have also experienced what seemed like the side of neck swelling to come and go -- thought it was just in my head that some days I felt it and some days I just didn't -- and my bad days correspond to feeling it. So your experience confirmed what I suspected. I guess I'm not low enough to have the facial swelling go away, but now I have hope that it won't be too much longer.

[Marilyn1959 in reply to SanRaphaela]

Glad to have been able to reassure you.

The positive for me is that the 'chipmunk' face eradicated the wrinkles - free botox effect! I have to admit I kind of like this 'inbetween' stage I'm at now and almost dread returning back to 'normal' when my face will no doubt resemble the map of England!

[SnazzyD]

Hello, the repositioning of fat to those areas is a consequence of these meds, even if you don’t gain weight. It does reduce slowly with dose, but I didn’t really feel my face was returning until under 10mg. I also severely limited salt because it made that appearance much worse, especially around the eyes and cheeks. I just got a longer haircut and avoided photos and mirrors, though I do have an absolute shocker of me in Rome in 40C heat when I was on 18mg. My head looks like a polished red apple.

[SanRaphaela in reply to SnazzyD]

Thank you so much for your response and sharing your experience. It helps tremendously.

[PMRpro Ambassador]

I have been on prednisolone in the UK, both plain and enteric coated, and on methylpred and prednisone here in Italy over a period of 9+years. I can only say I hated methylpred from the first day on - I became totally Cushingoid, it says so on my hospital notes from back then, and I was only on for 9 months - nor did it seem to control my pain.

I was switched to a form of prednisone - the weight started to melt away from day one and the doctors all now admit no-one would suspect I'm on steroids. The methyl bit is supposed to increase the efficacy - for me all it did was increase the adverse effects!

Everyone is different but it may be you react better to another form - but there are NO promises. You have to try it and see how you get on. But above all - LOW CARB!!!!!

[SanRaphaela in reply to PMRpro]

Thank you very much for your response. Perhaps a change would be worth trying, given your experience. But, maybe things will just improve as I get lower.