Message to Celtic

[Leeleep]

I’m wondering if you know how low your cortisol had dropped to before you started working with Dr. Hughes to get it up. I’m planning on following your treatment with Dr Hughes, assuming it’s not a conflict with present doc. I’m at 1.9 on last cortisol level test. I’m on 9 mgs. Prednisone now.

[Celtic PMRGCAuk volunteer]

Leeleep, I haven’t had any personal experience with cortisol testing. I did experience a severe flare and difficulty reducing from around 5mg (a common sticking point for many) but whether that was due to the dose not being sufficient to keep underlying inflammation under control or to my cortisol levels not getting up to speed, or both, I will never know. At your present 9mg dose, you have a little way to go before the point (around 7.5mg) where your adrenal glands can be expected to start manufacturing their natural steroid supply again. The smaller your dose reductions and the slower you go with each of those reductions from that point, the more chance you give your cortisol levels to pick up successfully.

[Leeleep in reply to Celtic]

How did you know your cortisol was not normal if you did no labs on it?

[Celtic PMRGCAuk volunteer in reply to Leeleep]

Cortisol testing wasn’t being mentioned (talked about) ‘back in the day’! Whether my cortisol levels were normal or not is really neither here nor there for me - I eventually reached remission and zero Pred successfully, albeit after reducing at a slower than snail’s pace towards the end, so proof for me that my cortisol levels were back to where they were needed for me, and proof that the slower you go, the more time you are giving those cortisol levels to catch up.

[Hindags]

PMRPro has said that not everyone metabolizes prednisone with the same efficiency, so theoretically it is possible to have reached the physiological level at 9mg.

I find it hard not to think that the strange episodes of wobbling and weakness in the late afternoons that began for me at 8.5 then smoothed out into waves of fatigue that moved through me in the late afternoons starting 7.5-7.0 mgs and which have now disappeared at 6 mg weren’t all somehow related to my adrenals. I can’t find anything on the internet to confirm my suspicions, it I’m still sticking with my gut.

What is special or different about Dr. Hughes’ treatment program? I infer from reading here that he’ s an excellent physician.

[SnazzyD in reply to Hindags]

Sounds similar to what I had at 8.5mg recently when I had a mildly dicky gut and I’m sure I wasn't absorbing properly. At 5pm my muscles went to jelly, I felt horribly fatigued and I felt very panicky and depressed. As soon as the Pred went in, I felt fine again until the end of the day. I take my Pred at 5:30pm. This went on until my gut recovered 4 days later. It was a warning of what could happen if I rush to the finishing tape near the end and I don’t want to repeat it if possible!

[Celtic PMRGCAuk volunteer in reply to Hindags]

SnazzyD, I don’t think it is anything special about Dr Hughes’ treatment or any programme as such. Rather, I believe it is simply that he treats everyone by an assessment of their personal symptoms alone and their personal response to that treatment, reacting accordingly depending on that response - thinking outside the box, if you like. That’s why he comes so highly recommended, and, as we well know what works for one may not work for another - each person’s journey with both PMR and GCA is likely to be a little different. So carry on “sticking with your gut” and hopefully it will see you through successfully.

[Celtic PMRGCAuk volunteer in reply to Celtic]

Sorry that reply was meant for SnazzyD! Oh dear, can’t blame it on steroids any more!

[PMRpro Ambassador in reply to Celtic]

Just blame it on the user-unfriendliness of this forum!!!!

[Celtic PMRGCAuk volunteer in reply to PMRpro]

Aah, thank you, PMRpro, I will! I was concerned it might be Anno Domini!!

[PMRpro Ambassador in reply to Hindags]

What's special about Rod Hughes? He treats patients not numbers from the lab. That is what makes him an excellent doctor. I think I may now have a clone (well, he's a bit younger...)

[Leeleep]

I will be going slow but doc will be ordering labs to evaluate.