Going back on prednisone

[England05]

I was on prednisone for 3 years. I tapered of and went on ibuprofen . In that 3 years got rareskin cancer that oncologist said could have been because of my low immune system and steroids could have been cause of that. So i am now paranoid. I had flare up doctor says to go back on prednisone and then taper off. Easier said than done. I hurt all over hard to stand so tired all the time and just stiff. I thought when you came off prednisone body would start producing its own..i really am not sure what to do. I am in america and not sure if she is really knowledgeable about PMR...i have appt next week but not even sure if i go back on what dosage should i start with and all doctors when they heari am on it all say get off of it as quick as you can. Just frusterated...

[DorsetLady PMRGCAuk volunteer]

As you’ve been through it all before you know that start dose is within the following range 12.5-25mg dependant on patient and doctor.

As you’ve had cancer issues perhaps you could suggest lowest dose initially......as your PMR has never really gone away you may be able to get through without the higher doses that some need.

It’s always a balancing act, but yours is exacerbated by the cancer, but to be on too little Pred is pointless, so try and impress that upon your doctor. Unfortunately too may seem to have an irrational fear of Pred - yes it has side effects, but what drug doesn’t?

Please let us know how to get on.

[England05 in reply to DorsetLady]

Thank you appreciate your input

[England05 in reply to DorsetLady]

I went on 10 mgs 3 days ago. Feeling better not 100% but not as stiff. I know cant taper yet but at what point would i contemplate..

[DorsetLady PMRGCAuk volunteer in reply to England05]

Give the initial dose ar least 2 weeks - 4 would probably be better - then you’re sure all the inflammation is back under control.

[England05 in reply to DorsetLady]

Thank you

[SnazzyD]

Yes, the varying opinions surrounding Pred can be a real dog’s dinner. Yes, when you stop Pred, the adrenal glands need to start producing their own cortisol. However, if you have PMR back, the inflammation caused by that isn’t going to be touched by the small amount you produce naturally. Therefore, you will need Pred to stop further damage occurring and possible development of GCA which would require huge doses. It’s a rock and a hard place situation. You may have got that cancer anyway, the doc really can’t tell. When you say “easier said than done” about tapering off, what do you mean? Unfortunately It’s quite possible you came off before the PMR has stopped.

[England05 in reply to SnazzyD]

I think i did come off too soon. Just didn't know enouugh about pmr. Thankfully found this blog and can talk to people that are going through this as well

[PMRpro Ambassador]

You should possibly speak to your oncologist and discuss the risks of going back onto pred with them. There is an increased risk with pred of developing certain skin cancers but if you have PMR again there is no real option besides pred - and any other medication they use will also be an immunsuppressant and all of them are associated with an increased risk of cancer at some later point. That is particularly the case when more than 1 of these drugs is used together and none of these other drugs work to suppress PMR symptoms on their own. Not even Actemra/tocilizumab.

[northwesterner]

I have been on pred for 6yrs now due to GCA & PMR. My rheumatologist told me that if I could get below 7.5 mg of Pred then I am at lower risk of side effects such as developing steroid induced diabetes. I have found 5mg is as low as I can go or I am just one big ache and pain all throughout my body! It took me a year of up and down dosages to find my levels. I stay in touch with my doctor by messaging and he gives me good advice quickly without having to make an appointment to go into the clinic.

[England05]

First day back on. Tryjng 12mgs see how that goes and go down from there. Fingers crossed. I was down to 3 should have stayed there but thought my body would take over...

Thank you for response.

[LIVEORDIEHEREIAM in reply to England05]

Sounds like a good place to start.

And, yes, if you are saying that you went from 3 mg to zero, that is the answer as to WHY you are experiencing the symptoms again. Your adrenal function was not ready to take over.

Good luck England05!

Ps: Please read the pinned post near the top on the right side of the page about "Tapering Plans" .

[PMRpro Ambassador in reply to England05]

If it is the PMR symptoms that are back - your body isn't going to "take over" any governance on that. You are never reducing relentlessly towards zero come what may. You are looking for the lowest dose that manages the inflammation that is created every day in the early morning as long as the underlying autoimmune cause is active.

If you are lucky that will be at 5mg or less - and at that point your body will ALSO need to start to produce cortisol again. But that has nothing to do with nor effect on the PMR symptoms. They are two separate things that must be balanced. 3mg wasn't enough to manage the PMR symptoms - a few days at 8mg and drop back to 5mg may have been all you need. 5mg is also low enough to poke your adrenal function into life if you stick there for a bit. One top and highly recommended rheumy likes to keep his patients at 5mg for up to 9 months - and the rest of the journey is often easier if the problem is adrenal function - if it is PMR, that's another story.

[England05 in reply to PMRpro]

Thank you