How much pain to tolerate

Posted by alancant @alancant, Nov 7 8:39am

I started with PMR in June - July and began with 20 mg prednisone and am 10 weeks into methotrexate. I do have hand pain, tight leg muscles that loosen during the day and shoulder pain. Question is how much pain is worth tolerating to keep reducing prednisone? Should I go back up to 5 mg or stick it out and hope the methotrexate eventually takes over and gets rid of these pains? Also if my Dr. thinks the methotrexate isn't performing well me wants to switch me over to Cimzia - any insights or comments would be helpful. THANKS

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@brooklyn1947

I started Methotrexate & was feeling pretty good after 3 weeks, so my Dr had me taper off from 5 mg in AM & PM to 5 in AM, but 2.5 in PM. He wanted to increase my Methotrexate, but my blood work showed a slight elevation in my Liver. I started having a lot of discomfort, so I had to go up to 5 in AM & PM.
I am not a happy camper!

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To brooklyn1947
Forgot to mention that I have not ever split the prednisone dose. There seem to be pros and cons about that.
From others…Splitting the dose seems to keep the pain down, but that might actually reduce the prompts to the adrenals to get back in the business of producing cortisol.

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@art43

To brooklyn1947
Forgot to mention that I have not ever split the prednisone dose. There seem to be pros and cons about that.
From others…Splitting the dose seems to keep the pain down, but that might actually reduce the prompts to the adrenals to get back in the business of producing cortisol.

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"From others…Splitting the dose seems to keep the pain down, but that might actually reduce the prompts to the adrenals to get back in the business of producing cortisol."
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The prompts to the adrenals can be restored by taking the entire dose is the morning when your dose is 10 mg or less. At doses greater than 10 mg, it probably doesn't matter.

I only split my dose when the overriding 3 a.m pain was very severe. I absolutely had to split my dose if I expected to sleep the entire night and be ready for work at 7 a.m. After I retired and tapered down to 10 mg, it didn't seem like I needed to split my dose anymore.

At doses less than 10 mg is when the adrenals need to get going again. Getting back in the business of producing cortisol again is a good way to say it. If the adrenals don't go back to work, I wasn't working which is probably why I retired ... no energy for work!

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@art43

To brooklyn1947
Forgot to mention that I have not ever split the prednisone dose. There seem to be pros and cons about that.
From others…Splitting the dose seems to keep the pain down, but that might actually reduce the prompts to the adrenals to get back in the business of producing cortisol.

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I think it might depend on the person and the amount of the evening dose. I read that no more than 1/3 of the daily dose should be taken as a second dose, and only if morning pain wasn't managed with a single morning dose.

From my first and only flare so far at 6.5mg - 6mg, I know that 7mg was my lowest effective dose. So on this tapering, from 8mg on I've reduced my early evening split dose of 2mg down by .5mg for each of the last two reductions instead of lowering the morning dose. I wanted to experiment with reducing the second dose before getting to 7mg again. Been a week on 7mg with a 6mg morning and 1mg early evening split and so far so good. It wasn't enough of an evening dose to control morning pain earlier but it's good now.

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Hello everyone again, my insurance won’t cover Kevzara in 2025. Seem to be allergic anyway but they will cover Actemra now. Say what?
Still waiting for possible biopsy for GCA. He’s an ophthalmologist, new in town, wants to set up his own practice but went on vacation. This is the kind of treatment here in Vegas, the referral was from my new rheumatologist. Still waiting for another name.
Do opthamologists do these biopsies, not surgeons?
Thank you for the help.
Karo89135

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Hi. I’m a new member. Was just diagnosed with PMR Taking prednisone 15/mg daily. Mornings can be a bit tough but it passes. My Dr wants to start infusion therapy and I’m petrified. Also the tiredness is awful.

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@nanniepie

Hi. I’m a new member. Was just diagnosed with PMR Taking prednisone 15/mg daily. Mornings can be a bit tough but it passes. My Dr wants to start infusion therapy and I’m petrified. Also the tiredness is awful.

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What kind of infusion is your doctor proposing? It seems fairly early to be starting an infusion after only just starting on prednisone, but there might be a good reason for it. Have you asked your doctor for the reasons?

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@karo89135

Hello everyone again, my insurance won’t cover Kevzara in 2025. Seem to be allergic anyway but they will cover Actemra now. Say what?
Still waiting for possible biopsy for GCA. He’s an ophthalmologist, new in town, wants to set up his own practice but went on vacation. This is the kind of treatment here in Vegas, the referral was from my new rheumatologist. Still waiting for another name.
Do opthamologists do these biopsies, not surgeons?
Thank you for the help.
Karo89135

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@karo89135 Have you already had the ultrasound for GCA? If not, ask for it.
Therese

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@thereselefever

@karo89135 Have you already had the ultrasound for GCA? If not, ask for it.
Therese

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Yes, Therese. I did. It was inconclusive for GCA but did find minimal Rt. Carotid occlusion of 50-60%. No bruit heard so 1 aspirin a day and Repath for LDL if we can find the latex free.
Also ordering Actemra when this bozo doctor changes it to NON auto inject. I really do believe I have GCA, headaches, TMJ’s very sore and limited, blurry vision, trouble focusing and feel off. Didn’t do well on methotrexate or Kevzara but one of them really helped the hand pain. It’s ridiculous to doctor myself like this, but I have no choice. Actually seeing the MD, not PA today. Not sure if it’s wise to not have the biopsy but in this town I think the Actemra will also help get off or decrease the prednisone.
Thank you for keeping in touch! It’s so helpful. Hope you are doing well?
Karo

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@thereselefever

@karo89135 Have you already had the ultrasound for GCA? If not, ask for it.
Therese

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Hi T, yes, pathetic a patient has to ask for recommendation for treatment. Not conclusive. Thank you for checking in! I have some unused Kevzara. Would love to give away my extra methotrexate and Kevsara. What a waste. My insurance won't cover it in 2025 but will Actemra. Confusing. A $ thing I’m sure. Allergic to it also.
Karo89135

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