Saw Rheum today after initial diagnosis 4 mos ago - PMRGCAuk


12,637 members22,953 posts

Saw Rheum today after initial diagnosis 4 mos ago


Well.. why Do I feel like he is a master at smiling and just wanting my visit over.

He did answer my question about tapering every day instead of double one day .. zero the next. He is not a fan of zero on alternate days after 7 mg trending down.

That was good.. but honestly,I was hoping for more dialogue about me.. the possible pitfalls.. or how good I may be doing. I feel that I am very fortunate to be at 7.5 mg after 5 mos.. began at 10mg. No dialogue.. 10 min in and out.

He prefers me to decrease 1 mg a month no matter what. 🌸Unless I flare.. but just venting folks. I have no control over personality. I am thankful for my current situation. Our group is a blessing.

Hope everyone is doing as well as possible with this disease. Keep smiling 🌸

15 Replies

Wow you seem to be doing brilliantly well. I am at 2.5 mg after 18 months and thought I was doing ok. I hope you continue to do so well it’s lovely to hear positive stories. I feel stuck at 2.5 mg which I know isn’t a high dose but like others I want this disease gone! I am still stiff and have typical waddle and slow movement if I sit for too long so I definitely know I still have PMR! But I am prefer to tolerate this if I can maintain at 2.5mg. Mind you I have never been totally symptom free.... oh one day I hope.... good luck with your journey.😀

DorsetLadyPMRGCAuk volunteer

I would agree not good to taper as you have been - your body cannot adjust readily to double one day, zero next. What it needs is consistency. There is some suggestion that your previous method is better for Adrenal glands, but not sure, and certainly not good for PMR.

Just because he’s not chatty doesn’t mean he’s not a good doctor, just not very good at communicating!

Leilagirl in reply to DorsetLady

Hi there.. My tapering has been a slow daily taper. Sorry if I was not clear. He did state that the every other day method was not great for us. Anyway.. you are right about communication. He was fine ...I just was looking for some information. . He has many patients that need his care that are much sicker than me.. Thank you! I hope you are doing well.

PMRproAmbassador in reply to Leilagirl

He possibly doesn't have the answers you are looking for. He hasn't had PMR or been on long term pred - he just knows the theory.

Leilagirl in reply to PMRpro

Yes . Thank you!

Has he ever had PMR or GCA hmm thought not.

You are going awfully quick Leilagirl. I hope you are going to be alright.

I will take it slow from here for sure. I am worried a bit as I know PMR is still with me. Thank you!

Alternating days has never been recommended for controlling inflammation of PMR/GCA. Our adrenal function is repressed anyway and we need the daily dose of cortisol. I think the only time it becomes suitable is at the very end when attempting a slow taper to zero. And of course you know better than to follow the man's advice to taper 1 mg per month no matter what! That will almost certainly lead you to a situation where you'll end up taking more pred not less as you deal with flares. From now on it would be very wise to follow one of the slow taper plans, if you aren't already, and stop tapering if steroid withdrawal discomfort appears to increase rather than go away after a few days, because that's a sign of PMR activity.

Leilagirl in reply to HeronNS

Such good advice..I really just want to stay at 7.5 mg for a while and very slow taper as to see how I do. I know this PMR is still with me . If necessary I will increase but really would rather take it slow from here. Thank you.

DorsetLadyPMRGCAuk volunteer in reply to Leilagirl

In that case do 0.5mg tapers. It may not be what Rheumy wants, but easier on you. Plus could try my (or others) tapering plan

My Rhummy spends practically an hour with me every time and she’s very personable, but she never once mentioned what a flare is or what I should do if I get one. She also checked me for GCA but never told me to go to the ER if I had those symptoms. 3 months between each visit. I gave my Internist the what for too because I asked for Pain relief and he only offered PT when I was having the mother of all flares!

PMRproAmbassador in reply to ConventCassie

Pain relief for a flare won't help either for most people - pred is your pain killer in PMR and GCA.

ConventCassie in reply to PMRpro

Yes. I told him that too. I told him if he hears that he just could “up the Pred.” (I owe it to his other patients.) I feel fortunate he didn’t go the opioid route, especially with that in the news so much today - another thing I was ignorant about. I don’t think he was aware of “flares” either.

Opioids really do not help PMR either it is good old pred or good old pred. If opioids do help they are helping something that is not PMR. If your Rheumy had not heard of flares, does she know anything about PMR?

“She” doesn’t communicate well. It’s my Internist that I discussed the flares with. I’m well aware about the capabilities of Pred now.

You may also like...