1. < Polymyalgia Rheumatica (PMR)

If you have tapering problems below 5 mg this might explain why.

Posted by DadCue @dadcue, Sep 16, 2024

https://www.nadf.us/secondary-adrenal-insufficiency.html
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The following explains the challenges we need to overcome. I believe this is exactly what happened to me.

"The most difficult issue is that symptoms of adrenal insufficiency will be present during the tapering phase, because low levels of cortisol are the only trigger to the pituitary to stimulate the return of ACTH production and the restoration of normal pituitary-adrenal responsiveness.

The longer high dose steroids were given for a disease like asthma, rheumatoid arthritis, polymyalgia rheumatica or inflammatory bowel disease, the more likely that an individual will suffer from adrenal insufficiency symptoms on withdrawal of the steroids.

In addition, tapering off the steroids may cause a relapse of the disease that had been treated, causing a combination of disease symptoms overlapping with adrenal insufficiency symptoms. That is why it is very common for steroid tapers to be aborted, with a temporary return to therapeutic doses of glucocorticoids, followed by a slow attempt at tapering if the primary disease is in remission. "

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

pmrsuzie | @pmrsuzie | Jan 24 7:41pm
In reply to @dadcue ""Is tapering in whole mg amounts immunologically safer/as safe as tapering half mg amounts?" ------------------------------- I..." + (show)
@dadcue

"Is tapering in whole mg amounts immunologically safer/as safe as tapering half mg amounts?"
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I personally don't think tapering by half mg amounts is necessary. I tried that too and it didn't make any difference. I agree with @jeff97 and just request the 2.5 mg and 1 mg tablets. Using those two tablets should allow you to do .5 mg increments except for 1.5 mg and .5 mg.

I have done it the way your rheumatolgist suggests too by doing 5 mg one day and 4 mg the next. Over 2 days, that averages 4.5 mg. That makes more sense to me if you want to prompt your adrenals to produce cortisol again. On the day you take the 4 mg dose that might give your adrenals a hint to make up the difference and produce some cortisol. I'm not sure if it works that way or not. I mostly say whatever works for you is all that matters.

I was flabbergasted when my endocrinolgist told me there was no need to taper from 3 mg to zero IF my cortisol level was adequate. It depended more on my cortisol level than my autoimmune disorders.

I think my endocrinologist consulted with my rheumatolgist to make sure I didn't need Prednisone to treat PMR. She also asked me I thought I needed Prednisone for PMR. I wasn't sure but Actemra seemed to have PMR under control.

Actemra wasn't intended to prevent uveitis from recurring. However, after some dose adjustments made easier with an infusion, of Actemra, it now seems like it can prevent flares of uveitis too.

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I have to think there was 'medical logic' for my rheumatologist to give me the taper plan he did. So I'll debate with myself whether or not to ask for the 2.5 mg pills. I guess my plan right now is to alternate 5 and 4 mg until I get my markers tested the beginning of Feb and go from there.
Hopefully some PT will help with this taper now.

REPLY
1 reply
richardab | @richardab | Jan 25 8:23am

Going below 10mg was some kind of threshold for me. Went back and forth between 9.5 and 10 until the pains finally stopped, went between 9.5 and 9, etc. Now between 8 and 7.5. New rheumatologist wants to me to reduce from 8 to 7 in one step but I'm leary of such a big drop. On Feb. 1, I'll go to 7.5 for 2 weeks and then alternate betwen that and 7 for 2 more weeks if it's working. I'm not forcing anything.

REPLY
1 reply
art43 | @art43 | 6 days ago
In reply to @pmrsuzie "I have to think there was 'medical logic' for my rheumatologist to give me the taper..." + (show)
@pmrsuzie

I have to think there was 'medical logic' for my rheumatologist to give me the taper plan he did. So I'll debate with myself whether or not to ask for the 2.5 mg pills. I guess my plan right now is to alternate 5 and 4 mg until I get my markers tested the beginning of Feb and go from there.
Hopefully some PT will help with this taper now.

Jump to this post

2.5 pills make it a lot more convenient for consistent doses of 2.5, 3.5, and 4.5. I was glad I had them. Good luck.

REPLY
art43 | @art43 | 6 days ago
In reply to @richardab "Going below 10mg was some kind of threshold for me. Went back and forth between 9.5..." + (show)
@richardab

Going below 10mg was some kind of threshold for me. Went back and forth between 9.5 and 10 until the pains finally stopped, went between 9.5 and 9, etc. Now between 8 and 7.5. New rheumatologist wants to me to reduce from 8 to 7 in one step but I'm leary of such a big drop. On Feb. 1, I'll go to 7.5 for 2 weeks and then alternate betwen that and 7 for 2 more weeks if it's working. I'm not forcing anything.

Jump to this post

I was acceptably able to drop by 1 monthly when between 10 and 5. Some occasional adjustment sniggles for the first few days after the drop, but thise are to be expected. Good luck either way.

REPLY
prestol | @prestol | 5 days ago

I have been dropping by half mg amounts starting at 10 mg. I go down every 10-12 days, and have a little increased pain at first but it resolves fairly quickly. I have no problem splitting the ones, as they are deeply scored. This system has allowed me to reduce to 5.5 with little difficulty. Tomorrow I will go to 5. I am also on MTX 25 mg weekly, but I honestly don’t know if it is helping. I think whatever works for you is the “best” way, and don’t be afraid to experiment a little.

REPLY
1 reply
rosemargaret | @rosemargaret | 5 days ago

I have had PMR for 7 years and have been at 3mg. daily to get off Prednisone for 2 years. At the beginning of October I was put on Methotrexate to help wean off the Prednisone. A couple of weeks ago I started getting some chest pressure and random light chest pain. (I do have Hypertrophic obstructed cardiomyopathy but have not had any pain). Could the Methotrexate have triggered the onset of chest discomfort?

REPLY
2 replies
jeff97 | @jeff97 | 5 days ago
In reply to @prestol "I have been dropping by half mg amounts starting at 10 mg. I go down every..." + (show)
@prestol

I have been dropping by half mg amounts starting at 10 mg. I go down every 10-12 days, and have a little increased pain at first but it resolves fairly quickly. I have no problem splitting the ones, as they are deeply scored. This system has allowed me to reduce to 5.5 with little difficulty. Tomorrow I will go to 5. I am also on MTX 25 mg weekly, but I honestly don’t know if it is helping. I think whatever works for you is the “best” way, and don’t be afraid to experiment a little.

Jump to this post

I'm on prednisone (10 mg) and Actemra for GCA and PMR. In a few days I'll start dropping 1 mg every 2 weeks to get down to 5. The Actemra allows a faster taper. I haven't had any problems so far coming down to 10 from 60, so hopefully that will continue to be true. I don't know what the taper plan is for after 5. My rheumatologist only ever gives me the plan for the next 3 months.

REPLY
prestol | @prestol | 5 days ago
In reply to @rosemargaret "I have had PMR for 7 years and have been at 3mg. daily to get off..." + (show)
@rosemargaret

I have had PMR for 7 years and have been at 3mg. daily to get off Prednisone for 2 years. At the beginning of October I was put on Methotrexate to help wean off the Prednisone. A couple of weeks ago I started getting some chest pressure and random light chest pain. (I do have Hypertrophic obstructed cardiomyopathy but have not had any pain). Could the Methotrexate have triggered the onset of chest discomfort?

Jump to this post

I think you really need to report this to your cardiologist. MTX has many potential side effects, some serious. Good luck.

REPLY
art43 | @art43 | 4 days ago
In reply to @rosemargaret "I have had PMR for 7 years and have been at 3mg. daily to get off..." + (show)
@rosemargaret

I have had PMR for 7 years and have been at 3mg. daily to get off Prednisone for 2 years. At the beginning of October I was put on Methotrexate to help wean off the Prednisone. A couple of weeks ago I started getting some chest pressure and random light chest pain. (I do have Hypertrophic obstructed cardiomyopathy but have not had any pain). Could the Methotrexate have triggered the onset of chest discomfort?

Jump to this post

@rosemargaret
Chest pain/tightness with a known cardiac issue = go to the ER. It might save your life.
Opinions here, or personal speculation about the possibility of methotrexate causing your discomfort are not presently relevant.
Ask me how I know. Good luck.

REPLY
1 reply
rosemargaret | @rosemargaret | 3 days ago
In reply to @art43 "@rosemargaret Chest pain/tightness with a known cardiac issue = go to the ER. It might save..." + (show)
@art43

@rosemargaret
Chest pain/tightness with a known cardiac issue = go to the ER. It might save your life.
Opinions here, or personal speculation about the possibility of methotrexate causing your discomfort are not presently relevant.
Ask me how I know. Good luck.

Jump to this post

I appreciate your feedback and will ask "how do you know?) I did see my cardiologist and cardiogram was ok. He's doing a stress test shortly to see why I have elevated tightness and mild pain on occasion. Any experience with this would be welcomed. I see absolutely no change since starting Methotrexate beginning of October....actually feeling a little worse.

REPLY
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