I have not posted in years. My cortisol is low at 2.0 and the ACTH is low at 1.5.
I am on 5 mgs prednisone and on actemra. I am having trouble getting off 4 yrs prednisone. Working with endo but she is too main stream. Gaia has an Adrenal supplement and I figure there are many ways to help get my numbers better while trying to get off prednisone. I am in pain all the time. I am on the very strict anti-inf diet. I take alternate dose between 4 and 5 mgs pred. Any input appreciated.
Is the pain you are in typical PMR/GCA pain?
Even when on Actemra, about half of patients are unable to get off pred altogether. There are 3 possible mechanisms that create the inflammation and Actemra only works for one of the - if either of the other two are causing your inflammation, you will still need some pred to manage it. Actemra does usually get everyone to a much lower dose of pred however.
I don't know what adrenal supplement you are talking about but be very careful with them. The only thing that will stimulate the adrenal glands to produce cortisol is a low level of pred and at 4mg that is still plenty for you to function so the signals to the brain may not be very strong. There is absolutely no proof that herbs will stimulate adrenal function and I see they are only meant to be used very short term. The only thing that works is low pred dose and patience - and nothing will persuade damaged or worn out adrenal tissue to work again. It may not even be the adrenal glands themselves - there are many steps in the feedback system and only one of them may be faulty. Just like your car, you need more than just a full tank of fuel for the engine to run.
I find this very interesting as I just got down to 2.5mg of pred for about 4 weeks using the dead slow system , then over a period of a week I was in so much pain I have increased back to 5 Mg and cleaned my diet up impeccably , no alcohol , no gluten , no sugars ( that I can see) no nightshade. I can’t do anymore , but if my adrenal glands are shot maybe that was the reason . I have got to 2.5 before but never lower, Rheumy has zero sympathy and says just take strong pain killers till you adjust, but I have tried that and after 2 weeks didn’t adjust . 6 years into this drug and they want me on MTX maybe that’s the only way I will get off it completely, but the question is will I be replacing it with a bigger problem long term . Really stuck between a rock and a hard place . Any ideas or advice .
Any rheumy who wants to put a patient onto MTX when they CAN get to under 5mg without problems needs their head read as my mother would have said! I'd be looking for another one who looks at his patient and NOT a image he has gathered from a textbook. You are by no means the only person - but I bet you could get to under 5mg longer term if you didn't push to get off altogether. Prof Dasgupta told us last summer he often leaves people at 2-3mg for some time as it reduces the risk of relapses.
If you are in pain you need to try and alleviate it. Does it seem like PMR pain? Have you tried any other painkiller and if so did it work? If not it is probably the PMR and you should go up a bit and hit the PMR on the head.
Have you been using an alternating dose all along? Or is this something new as you try to taper (which you probably shouldn't be doing right now if you're in constant pain). In fact alternating those two doses (5 and 4 mg) is changing your dose 20% from day to day and may not be helping.
Only doing the alternating dose since I’ve been on 5 mg of prednisone. This pain is really devastating. I don’t know if it’s from my PMR. I also have sogrens syndrome and the doctor is looking at labs that are indicating it very well may be lupus right now. The GCA is really in remission. Maybe it’s the PMR. I just can’t take this anymore. I would like a endocrinologist that is more holistic.I get a couple of Vicodin pills a day from my primary care dr. and I was actually down to 2 mg of prednisone and not in all this pain and that was a year and a half ago and then I got Covid and I had to go up on my prednisone.
I think I must’ve come down on that higher dose too fast. I probably need to get the pain under control with higher prednisone.
I had two cataract surgeries last month because the prednisone really screwed my eyes up I couldn’t see.
That in itself was a nightmare because of the GCA I thought I was going blind. The good news is my eyes are fixed and I can see.
I speak to my endocrinologist this week on the phone and I guess I will discuss upping my dose. I also had to go off of the Actemra while I was having my eye surgery.
My rheumatologist is not always available to answer my questions.
I really don’t know if I had to but no one would give me an answer so I just stopped Actemra for surgery for a couple of weeks.I’m sure that contributed to having so much more pain.
Does the AC TH and the cortisol testing go up to a more normal range when I am on a higher dose of prednisone? I am so afraid of adrenal failure.
At a higher dose of pred your body will make less cortisol - but the pred is a replacement for it so that is fine. I think you have got a bit confused about it all - and what you need to start with is getting the pain under control of it is PMR. Never mind about adrenal function at present. And I also think alternatin' 5 and 4 is too much of a swing from day to day and may be contributing to your feeling unwell.Look at one of the slow tapers and slow everything down a bit.
PMRPro has answered your questions. I had a bit of a similar journey with my flare this year. I believe when we tell ppl they can drop quickly back to their former dose or just above we are assuming the pain has been caused by too fast a taper. However in my case, and it sounds like maybe in yours too, the pain is caused by an increase in disease activity and we simply cannot go quickly back to a level which used to be fine for us because for at least a while we actually need the higher dose. If it's any encouragement, once I realized that and slowed down things did start to get back on track for me although I'm still at a higher dose than I had been for a long time. I don't have other complicating diagnoses, although when my flare was really bad I had times when I felt my jaw wasn't working properly, hard to open my mouth enough although not really painful, just uncomfortable, and was afraid this was a sign of GCA. As the PMR symptoms have subsided this also has gone away so I think it must be related somehow. It did make me much more serious about being cautious with my taper. This has been going on for months! Hopefully you will get back onto a smoother track soon.
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