Second update Nearly there

[Crochetgirl65_]

Well my consultant is a very nice man but

Having explained my recent troubles and symptoms, I said that there was no sign of it being PMR returning but rather adrenals not operating properly. He just went through the usual routine, can I get up from a chair without help, resist pressure on my arms, looked at my hands and seemed satisfied. I pressed further about cortisol etc perhaps I could have a blood test? His response? That was to do with the endocrine system which was not his speciality but I could have the usual blood tests, signs of inflammation (I forget the initials, CRP, ECR?) and liver and kidney etc. Hopeless! According to him I should stay on 1mg for 5 months 🤷‍♂️ then 0.5 for eight weeks then I need to see him again.

what on earth is the point? Or have I got something wrong here?

[SheffieldJane]

Clearly you need a referral to an Endocrinologist then. If he can’t supply one, can primary care?

[Crochetgirl65_ in reply to SheffieldJane]

Thanks, Sheffield Jane. Back to the GP then? Not hopeful as she thinks that I can go from 1mg to zero with no problem.

[SnazzyD]

If a GP can do an early morning cortisol, why can’t a Rheumatologist? I know they haven’t liked doing referrals to others for a long time, instead have the GP do it. I suspect it’s down to who pays. It’s not good in the current state of affairs where everything takes so long.

[Crochetgirl65_ in reply to SnazzyD]

Yes I got the distinct impression that he wasn’t interested. How can he claim no knowledge when I have been taking a drug that has a direct impact on that very system?

I will try my GP.

[SnazzyD in reply to Crochetgirl65_]

Exactly, and it never ceases to amaze me the apparent lack of interest or knowledge (which is not rocket science) when it comes to the adrenal affects of the drug that is the mainstay of their specialism. In fact any affects and what can be done to avoid and help.

[Crochetgirl65_ in reply to SnazzyD]

I just felt very disheartened at his apparent lack of interest and unwillingness to discuss what might be going on. These appointments always make me feel more alone than ever.

[SnazzyD in reply to Crochetgirl65_]

Oh yes, they sure can do that.

[Rugger]

My GP has checked my 9am cortisol in the past. Just blood taken with no pred for 24 hours beforehand. Depending on the result, your GP could refer you to an Endocrinologist, maybe?

I hope that in the 6 - 7 months before you see the Rheumatologist your adrenals may be working a bit better..... 🤞

[Crochetgirl65_ in reply to Rugger]

Thank you. I will ask the question 👍

[PMRpro Ambassador]

I think he IS taking it into account by telling you to stick at 1mg for 5 months before going lower. Many would tell you to stop straight off. It is felt it can take up to a year for adrenals to get up to speed even after stopping pred altogether. REcent work at Imperial in London found that 2mg can be plenty to keep you functioning. I think you have to be patient and work on your GP to do a basal cortisol - cortisol done on a blood sample taken before lunch after not taking pred in the previous 24 hours.

[Crochetgirl65_ in reply to PMRpro]

It may well be the best course of action but I still feel it would be good to confirm how my adrenals are doing? If he has no knowledge of these issues how can he give proper advice on the way forward?

[PMRpro Ambassador in reply to Crochetgirl65_]

Any doctor can see if the cortisol is low - and refer you to endocrinology who are the epxerts. But even they can't DO anything either but wait and see if it slowly improves. Because if it doesn't - that will be adrenal failure and a life-time dose of pred or hydrocortisone as replacement therapy.

[Crochetgirl65_ in reply to PMRpro]

Ok thank you for the info. I’ve clearly completely misunderstood what is going on with it all. I will of course have to be patient, as we all do.

[DorsetLady PMRGCAuk volunteer]

According to him I should stay on 1mg for 5 months 🤷‍♂️ then 0.5 for eight weeks then I need to see him again.

Agree with PMRpro that sound sensible to me…. And he did admit adrenal issues weren’t his speciality [he may prescribe drugs that affect them, but doesn’t mean he fully understands them] — if you want a cortisol test, take that up with your GP initially.

[Crochetgirl65_ in reply to DorsetLady]

That’s great. Thank you 👍

[Crochetgirl65_]

Thank you so much for taking the time to post all of that. It was very interesting and informative.

[Crochetgirl65_]

This all sounds fantastic. A really solid plan and fully explained. I guess the NHS is just too stretched these days. Some really good info for me though, thank you.

[Crochetgirl65_]

Thank you so much for your kind words today. , I thought 9/10 years was bad enough! Well done! I think part of my issue is I resent being ‘ill’This was never me. I was always very strong, hardly ever ill, then PMR hit. I feel robbed of 10 years. I think I need to reassess now because all I am doing is moaning today! That isn’t ‘me’ either! I know I am very lucky compared to a lot of very poorly people. Just having a couple of down days I guess. So sorry every one, I’ll be fine again tomorrow 👍

[HeronNS]

Hope your GP does get you the help you need. Very interested in this subject as I think I'm in a similar boat regarding continuing to taper pred, no PMR symptoms, but definitely these final tapers are no walk in the park. At least I've been only with a GP all along and since diagnosis have received compassionate treatment. My thoughts are with you. 🍀

[Crochetgirl65_ in reply to HeronNS]

Thank you for your kind thoughts

[Myfoe]

Off topic but are you an enrolled Potawatomi? I am enrolled Kootenai I have not seen many other native Americans on PMR sites have a good one..

[Rottsuzi]

hi I have dropped from 3 to 2 1/2 and feel awful nausea dizzy , I normally feel the difference on the drop in fatigue for a few days but this feels different I’ve never had a adrenal test done but definitely going to demand one now .

I know how frustrated you must feel x

[PMRpro Ambassador in reply to Rottsuzi]

Did you use a slowed taper or did you drop straight from every day 3 to every day 2.5mg?

[Rottsuzi in reply to PMRpro]

I’ve been on 3 for months then dropped last Sunday and I’ve felt awful since .

[PMRpro Ambassador in reply to Rottsuzi]

I suggest you go back and then taper using one of the slowed tapers, DSNS or DorstLady's slow taper, that you will find in the FAQs, Dropping 1/2mg at 3 is 16% - way over the recommended 10% and a lot for the body to adjust to. Let it meet the new dose just a day at a time at first!

[Rottsuzi in reply to PMRpro]

Ok so back to 3 for how long ?

[PMRpro Ambassador in reply to Rottsuzi]

Just to start the slow taper. Have a few days at 3mg, may be a week to see how much better you can feel. Then, if you still want to taper, start on one or other of the tapers, whichever you find easier to implement, and introduce the 2.5mg dose slowly, not all at once. If you start to feel ropey, repeat a step - a few times if you want. The lower you get, the slower you may need to go to avoid feeling unwell. It should improve with time but there is no way of knowing how long it will take, in some people it takes weeks, in others it can be months.

[Rottsuzi in reply to PMRpro]

Ok thank you so much x

[DorsetLady PMRGCAuk volunteer in reply to Rottsuzi]

You need to be on a slower tapering regime at these levels -essential for illness and adrenals -

healthunlocked.com/pmrgcauk...

[Rottsuzi in reply to DorsetLady]

Ok thank you

[Rottsuzi]

That’s amazing giving you the biologic , are you in the uk

[SnazzyD]

I agree it is complicated which is why no definitive answers. I do wonder what other hormonal imbalances I’ve had/got but that issue is just swept under the carpet.

[PMR2011]

The coordination of your team sounds awesome. What health system are you in? I’m in Maine and it’s been good but only because I’ve trained them up and they’re friends so they talk to one another! 🙂

[Myfoe]

Some people from Potawatomi tribe come to our reservation every summer to assist us with wild land fire suppression a few years back (pre-PMR) when I could still contribute so the name became familiar to me until now I guess didn’t realize there was a county with the same name learned something new today 👌 I have only been through Iowa twice when I drove long haul semi I remember being in awe of the corn fields grown right to the edge of the highway and went for miles! I had my DNA tested about a year ago since I am only 1/2 Native American my whole life I was told we were of German descent wow did the DNA test blow that out of the water! like you I am also Irish,Scottish and German! I have only read about Chippewa, Ojibway and Algonquin seems the more one digs you eventually find a common tradition… thanks for the response