Received shot of methotextrate today, 2mgs for the week. Have been feeling better. Doctor is ok with my taking 3mgs per day of medrol.
Did some research and found this study on recovering adrenal function. This testing seems to show positive results. If I am reading it correctly, it can take from one to three years to recover adrenal function after a "normal" course of prednisone or methylprednisone for GCA (and PMR, (which is obviously different for each person) I believe they included in this study). Sounds very positive. Sending the link. This pp seemed appropriate.
"...Time until adrenal function recovered
Seventy-four (49%) non-responders to the first ACTH stimulation test were re-evaluated annually until they had fully recovered. The patients’ outcomes are shown in Figure 1. Nineteen patients were lost to follow-up during the study, four patients voluntarily stopped the hormone substitution, two patients died (unrelated to GCA) and one patient relapsed. (graph on site)
Among the non-responders when first tested, 30/57 (53%) had not recovered normal adrenal function after 1 year. After 2 years (at test 3), 15 of these patients had still not recovered. By year three (at test 4), 4 patients were responders whereas 7 were not. Among patients with a negative first ACTH test, recovery of adrenal function occurred in a mean time of 14 months; the maximal time until recovery was 51 months, and this patient needed five tests. Until 36 months, 41/48 (85%) patients, who were non-responders at the first ACTH test, had recovered. Regarding the entire study population, seven patients (5%) never responded to ACTH stimulation and were finally categorized as having definitive adrenal insufficiency. Only, three of these patients received a metyrapone test, which confirmed this status...."
Wanted to include this, which also contains good information, I believe:
None of our patients had an adrenal crisis. However, our patients were given hormone substitution and were strictly followed up.
". . . Although the risk of developing such a severe complication has been known since the 1950s, its real frequency remains controversial [11,12]. One could explain the very low frequency of adrenal crisis by its central origin: the glucocorticoid-induced negative feedback to the hypothalamic and pituitary glands may result in an adrenal crisis, but usually only if there is acute physiological stress (e.g. surgical or infectious stress). Thus, given the rarity of an adrenal crisis, systematic ACTH testing does not seem to be justified. However, symptoms of slow adrenal insufficiency (e.g. weakness, fatigue, myalgia, arthralgia, depression) should not be minimized. Thus, detecting slow adrenal insufficiency may be critical because of its considerable impact on quality of life and the potential risk of disability.
Our study confirmed that total dose and duration of GC were predictive factors [8,11,13]. We determined the thresholds of 6 and 12 months of therapy, which may help physicians to evaluate an increased risk of adrenal insufficiency. . . ."
Sounds good. wishing all good health
all my best, Whittlesey
heavy snow in NYC -- but ok, today
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Well, your post is very interesting! I have been on pred for 3 years now and the lowest dose, late last year was 6mg. I felt fine until my accident which resulted in a wrench injury and a big flare in my symptoms (they had virtually gone until then). Back up to 10mg. That indicates to me that my adrenals were not doing much but coasting and not at all ready to pile in to help.
We are told that we are at risk of adrenal insufficiency for a year after stopping steroids and need to take steroids again for any crisis we might have in our lives.
Well, perhaps this info explains why so many patients do not recover for years and are up and down on their meds.
It also explains why it is often so difficult to reduce below 5mg - sluggish adrenals finding it difficult to 'get it on'.
When I had my first flare I was starting a holiday in Wales. My partner rushed me to the nearest A&E where I met a very knowledgable GP. He seemed to understand PMR/GCA so well and the effects of pred on our bodies. He said that he had quite a number of patients with these illnesses and, with careful management, he could get them down to the low doses and return them to good health, but he said that he liked to keep them on a very low dose of steroids indefinitely - to help the adrenals cope. I knew he was good. That guy had done some homework!
Hi Pats, Thanks on the post. I think you did find a good gp. Yes, I have had similar experiences as you speak of, when you went back up to 10mg. This has happened to me. And in the ER, they immediately want to put me on 60mgs. and often I am pretty sure I am not having problems with the temporal arteries. and I know what will happen when I go up to 60 and then back down and don't want to go through it again. I have started refusing this course of treatment, accept two days of 20 mgs and then I bring it down when I go home. But I usually get that complete fatigue.
And yes, from these studies, it seems it can be a year and sometimes longer. and all but a very low percent did "come back" with adrenal function. which is good news, thank the lord.
and I agree, it is hard to go below 5mgs, because the adrenals are not fully functioning, yet. If you take below 5mgs, it seems almost anything can bring on this fatigue. and your advice is right on how to handle it. This is a major disease.
I'm glad you found a good doctor ! and yes, getting down to 5 mgs and staying in that area of prednisone seems important. the report is good news, I think and we are doing the right things.
thanks for your post and for your earlier advice. I am doing this and it does work.
Hope things are good with you and that you continue to get through this as well as you are !
all my best,
Whittlesey
Hi Whittlesey again,
I guess you're not exactly enjoying all that freezing weather! Well, in the south west of England, we're having torrential rain to the point were folks have been flooded for weeks. We are lucky as we're up high in the moors, but the floods lower down are the worst ever recorded.
Hi Pats, laughing. yes. It seems like storm after storm. NYC isn't used to it and doesn't handle snow well at all. I grew up in Connecticut which is north of here and we grew up with snow. NYC doesn't seem to realize -- you have to shovel it to get rid of it. It's as simple as that. We hear the officials discussing "what should we do". ?
Sounds not good, my god, floods? Moors sound nice. glad you are above the water. Agree on the spring, --- soon, please ! and yes, a dry spring. stay dry.
Good to read the latest this morning. I was feeling pleased I had reduced Preds to 5mgs and then severe headaches started especially at night, better when up and about. I was given amitriptyline 10mgs at night but I was very dizzy when getting up in the night which I have to do to see to my dog who has been very ill since end of December. I felt the risks of my falling outweighed the headache so put myself back up to 6mgs Preds. This is working and yes now I understand that the trauma of the dogs Seizures and her vet hospital stay and recovery from the Meningitis has taken its toll on my PMR. I also live in Somerset above the flooding which is of constant concern for so many people and still the rain comes down. Thank you all for your support.
Thank you 55grove. Yes, I have also found that going up a mg can help with the dizziness. Glad you are feeling better. Sorry to hear about your dog. and yes, understand that animals can suffer with similar situations. really difficult. Glad that you are above the flooding. They have plowed and a lot of the snow is gone. I am at the southern part of Manhattan and the plowing is not done really well. We have more snow predicted today, but only a few inches. Hope both you and your dog are feeling well. all my best, Whittlesey
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