Prednisone VS Methylprednisolone

[Mks9558]

Had a follow up with my rheumatologist today, 4th visit in 6 weeks or so. I have been on prednisone since September 17 started at 20 mg for 5 days then up to 60 mg for 30 days then down to 50 for 7 days - flared so up to 80 mg for 14 days then down to 60 mg for 14 days- have not been able to do much of anything- Dr freaked out at sight of me- swollen face- ankles - hands- claudation of arms worse than before diagnosis - hip - shoulders and neck pain really not subsided- she deals there is something else going on -

1) I may not be metabolizing the prednisone in my liver properly

2) may have a pinched nerve or nerve in my neck

For number 1 above she wants to put me on 48 mg of methylprednisolone for 1 week then down to 40 mg and stop prednisone now(I am also on Actemra)

For number 2 above she is ordering an MRI

Also sending me for massage therapy and acupuncture and ran all kinds of bloodwork- all coming back negative ERS -8; CRP-.5: ANA,RA-Neg

And I return in two weeks for follow up

Thoughts? I have been on this prednisone adventure for 72 days now. I want to do the right thing - trying not to be hysterical and remain rational. I understand I will be on prednisone for a while hopefully the dosage will be reduced somewhat.

Thanks and happy Wednesday!

[piglette]

Have you been diagnosed with GCA? You are on a very high dose of pred. It does sound your doses have been a bit haphazard. If you have just been diagnosed with PMR the dose is much too high, no wonder you have had so many side effects. If you have hip and shoulder pain at that level of pred I think they should really consider if it is PMR. Did painkillers work at all before you were diagnosed? What was the diagnosis?

[Mks9558 in reply to piglette]

Hi Piglette-

Yes both PMR & GCA. First 4 days was just PMR then GCA confirmed. Painkillers did not work before diagnosis.

/mk

[piglette in reply to Mks9558]

If painkillers did not work it’s possibly likely to be PMR in that case. Also that explains why you were on such a high dose if pred if you have been diagnosed with GCA too. Hope things get better for you.

[PMRpro Ambassador]

If she thinks you may not be metabolising the prednisone - why didn't she try a methylpred injection to start with I wonder? Or - since you are thought to have GCA, why not an infusion since then there are no concerns about metabolism and the effect is instantaneous. I think I'd want a second opinion though.

[Mks9558 in reply to PMRpro]

Very good question PMRpro! I have been on a high dose of prednisone 60+ mg over 60 days and the sight of me freaked her out- she was very concerned about full blown cushings based on the changes of the last 3 weeks. And I am on Actemra so I believe she felt confident I am significantly covered and wants to focus on taper.

If I only you had been with me to ask!

She is sending me to an immunologist:neurologist specialist and I feel very lucky to get the appointment as I understand they are few and far in between. But I will need to wait until 1/31 for that appointment. I have also seen 3 GPs

Thank you as always for your very sound guidance!

Best,

/mk

[PMRpro Ambassador in reply to Mks9558]

But cut those carbs - lots and lots. That may help. And salt - it encourages fluid retention,

[PMRpro Ambassador in reply to PMRpro]

I wanted to add this and it won't let me:

Don't panic about the Cushings label, even if she is. Five and half years ago that was at the top of the diagnosis list when I was in hospital - I was on methyl pred and it led to very quick weight gain etc etc. I was switched to a different steroid and cut carbs drastically, I lost 35+lbs in 18 months and all my doctors now say there is nothing to show I'm on steroids, no Cushings syndrome at all. You know why you are Cushingoid - on a high dose of steroids. As you reduce so will it. It isn't a case of "why is this patient cushingoid?", is it a tumour or what...

[Mks9558 in reply to PMRpro]

Thank you I will keep it top of mind - just “thrilled” we are running into the holidays and all the goodies that will be so tempting. Good news is I am on leave so not in office and have already agreed to curtail my cookie baking this year. Hoping the taper will help too and going to a gluten “lite” will also help with some carbs.

My Dad is confirmed celiac patient for last 22 years and I have tested negative but cutting won’t hurt & should help and I am not ready or interested in jumping through the hoops Dad must go through. Gluten is in almost all processed foods as I am sure you know.

So I will toss the crackers and keep the salt shaker in the cabinet. Hubby is low sodium cardiac patient and diabetic so will follow his lead he lost 35 lbs since March.

Great tips. Thanks again!

/mk