How to address PMR pain while decreasing prednisone

Posted by barbararene @barbararene, Feb 13, 2017

I have been diagnosed w poly myalgia rheumatica (pmr). Am taking 5 mg of predisone, was taking 10mg.
Every time I go on a low dose, symptoms come back. I can’t take pain meds, but do drink wine to ease pain, although I’m told no alcohol w prednisone. Anything you can share as far as info

@evelyn123

Hi all, I was just diagnosed with PMR and Temporal Arteritis (TA) today. I was diagnosed with SLE (Lupus) several years ago, which went into remission. I thought I was experiencing a Lupus flare, but no, this is a brand new autoimmune disease. Ugh! I'm taking prednisone right now, but have been managing the pain with plaquenil (my GP also thought it was a Lupus flare). I have only a few symptoms related to the TA, and they're infrequent. I hate the idea of having to take prednisone long(ish) term, meaning more than a month or so, but the risk of a problem if I don't take it – blindness – is scary! I'd like to know if anyone else here has it and what their experience has been. Thanks in advance for any thoughts.

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@evelyn123 – Hi – I am Tinkerbell and was diagnosed with Temporal Arteritis – It is also know as Giant Cell Arteritis. I had my temporal biopsy on 3 May 2017 at Mayo Clinic. I was started on 60 mg of Prednisone 1 and 1/2 years ago. I took my last pill yesterday (1/2mg). It has been a long road and I have gained 12 lb. Otherwise, I have done very well. I am hoping that I will be okay but there is the chance I may have to go back on the Prednisone depending on the symptoms. Once I started on the Prednisone the headache was gone by that evening. The biopsy was done 1 day after my emergency room visit. I also have other autoimmune diseases – hypothyroid and rosacea. If you have any question just get back to me.

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@tinkerbell

@evelyn123 – Hi – I am Tinkerbell and was diagnosed with Temporal Arteritis – It is also know as Giant Cell Arteritis. I had my temporal biopsy on 3 May 2017 at Mayo Clinic. I was started on 60 mg of Prednisone 1 and 1/2 years ago. I took my last pill yesterday (1/2mg). It has been a long road and I have gained 12 lb. Otherwise, I have done very well. I am hoping that I will be okay but there is the chance I may have to go back on the Prednisone depending on the symptoms. Once I started on the Prednisone the headache was gone by that evening. The biopsy was done 1 day after my emergency room visit. I also have other autoimmune diseases – hypothyroid and rosacea. If you have any question just get back to me.

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@evelyn123. I am elderdiana.Three years ago while on vacation, I temporarily lost my vision in right eye, also jaw pain. When I got home my primary care Doc told me to go to.hospital immediately.I had no headache pain. After 2 days of tests, I was told I did not have TA, also called giant cell arteritis, said it was migraine headaches in eye. My doc insisted I should have a biopsy which was done dec 1 2015 and TA was confirmed att another hospital. I WAS PUT ON 60mg of prednasone For 3 months and methotrexate was added. Prednasone was slowly lowered until last march 2018 down to 3 mg. That is when my sed rate and c reactive protein tests began to climb. My rheumatologist wanted me to come in once a month for intravenous injections of Actemra in her office.I REFUSED. Because INTRAVENOUS USE of this drug is not allowef by FDA.for temporal arthritis. Until a few weeks ago I was still on 3 mg and my c reactive protein test hit 27.I called and said I want more prdnazone and was put on 5mg. My blood tests are improving. I HAVE A LONG TIME Primary CARE DOC I CAN TALK TOO in addition to seeing the Rheumatologist, every 6 weeks. I hope you do not have TA it is a complex disease especially with eye involvement but it is .manageable. It is helpful to read Mayo connect about others withf TA. to view their progress and also good to have a good primary care doc in addition to your rumatolagist.

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@johnbishop

Exercise is one of the keys to PMR. I hated doing it but once you get into a routine and find one that is not too difficult or that causes more pain it’s not too bad. I bought a recumbent bike, elliptical combination and use it for 30 minutes when I first get up 5 to 6 days a week and then a few times a week I use it in the evenings for 30 minutes while watching the news. It’s easy for those that have trouble or don’t like walking because it has a larger seat and pedals so doesn’t cause joint pain. I also started using a therapy band to see if I can regain some strength in my hands, arms and shoulders.

Keep working on him to exercise!

John

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I am new to the group, having been diagnosed in Sep. 18. with PMR at 67.i was very healthy and walked 3-5 miles every day. Then one day when I got up from a chair I felt a stiffness in back of my thighs and I struggled a little to get started moving. Then over a few weeks the bottom fell out for me. I am still in a state of disbelief, shock, that this has happened to me. Nights are awful.

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@rogernj67

I am new to the group, having been diagnosed in Sep. 18. with PMR at 67.i was very healthy and walked 3-5 miles every day. Then one day when I got up from a chair I felt a stiffness in back of my thighs and I struggled a little to get started moving. Then over a few weeks the bottom fell out for me. I am still in a state of disbelief, shock, that this has happened to me. Nights are awful.

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Hello Rogernj69 my name is Beryl and I too have PMR….glad you found us as I am pretty sure you will feel better about your condition being able to talk to people in the same position …..I feel for you as it is bad to be an active person and all of a sudden you can't do the things you used to do ……talk to us and we will try and help you with our experiences…….

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@rogernj67

I am new to the group, having been diagnosed in Sep. 18. with PMR at 67.i was very healthy and walked 3-5 miles every day. Then one day when I got up from a chair I felt a stiffness in back of my thighs and I struggled a little to get started moving. Then over a few weeks the bottom fell out for me. I am still in a state of disbelief, shock, that this has happened to me. Nights are awful.

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Hello @rogernj67, I would like to welcome you to Connect along with @beryl and other members here with PMR. I was first diagnosed with PMR in 2007 and was prescribed 20 mg of prednisone which pretty much made the pain go away but I still had some stiffness. I was able to taper off of prednisone in 2010 when the PMR went into remission. It came back in 2016 and I was back on prednisone and gradually tapered off in Feb of this year when it appears to have went into remission again. It definitely puts a crimp in ones style but I think one of the keys is to keep moving and doing some exercise but just not overdoing it so that it brings more pain. Interesting that I was also 67 in 2010 when I was first diagnosed with PMR.

You mentioned nights are bad. Have you mentioned it to your doctor or rheumatologist? I'm wondering if they could spread your medication dosage out or take some in the morning and some at night. I never needed to do that but maybe others can share how they deal with the pain.

John

Liked by Dee

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Thanks John. Yesterday I tried to get by one 5mg but I paid for it last night. So by 6am I could not take the pain and took 7mg. So, yeah, I will take 3 mg before bed and see if that helps with the night pain and stiffness. I actually began on that 6 day course of methyl given by my doctor before I even saw the Rheumie. And then the Rheumie gave a bottle of 5mg and said if necessary go to 10a day. But I just hate the idea of drugs.

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@beryl

Hello Rogernj69 my name is Beryl and I too have PMR….glad you found us as I am pretty sure you will feel better about your condition being able to talk to people in the same position …..I feel for you as it is bad to be an active person and all of a sudden you can't do the things you used to do ……talk to us and we will try and help you with our experiences…….

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Thanks Beryl. I sure could use the support as I am just overwhelmed by all this. I watched my father suffer for many years with RA. I guess there is also a hereditary component to this .Thing about it is my absolute worse pain is in both knees. Ortho says I have some arthritis and meniscus tears. I also have the upper arm pain, shoulder, neck, and thigh and buttock pain.

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My name is Alan and I also have PMR since July 2017. I started on 20 mg and over the first year I tapered down slowly to 1 mg with few Issues. I had a relapse in August and now back to 3 and 2 by the end of the month. I followed the Mayo clinic Protocol. I have gotten great support from others on connect especially from John, the Volunteer Mentor and my rheumatologists

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@alanbruce

My name is Alan and I also have PMR since July 2017. I started on 20 mg and over the first year I tapered down slowly to 1 mg with few Issues. I had a relapse in August and now back to 3 and 2 by the end of the month. I followed the Mayo clinic Protocol. I have gotten great support from others on connect especially from John, the Volunteer Mentor and my rheumatologists

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Thanks Alan. Did you have to go to the Mayo Clinic to do the protocol.? I need something like that. Roger

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@rogernj67

Thanks Alan. Did you have to go to the Mayo Clinic to do the protocol.? I need something like that. Roger

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Hi @rogernj67, I think @alanbruce might be referring to working with your doctor to come up with a schedule for tapering off of prednisone. Each of us are different so you really need to find something that works for you. This might be helpful to get you started:

Prednisone withdrawal: Why taper down slowly?
https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923

Here is another discussion on tapering down for prednisone:
https://connect.mayoclinic.org/discussion/prednisone/

Both occurrences of PMR I started on 20 mg of prednisone and each week I tried to go down by half the dosage and realized it was too big of a jump so decreased the amount. What helped me is tracking the daily dosage and the pain level. I also had the doctor prescribe different sizes of the prednisone tablets – 20, 10, 5, 2.5, and 1 mg. I would also break the tabs in half with a pill cutter if I was in between a dose where I had too much pain. I think it's important to work with your doctor and come up with a tapering schedule that works for you.

@rogernj67, can I ask what daily dosage you are currently on?

John

Liked by Dee

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@johnbishop

Hi @rogernj67, I think @alanbruce might be referring to working with your doctor to come up with a schedule for tapering off of prednisone. Each of us are different so you really need to find something that works for you. This might be helpful to get you started:

Prednisone withdrawal: Why taper down slowly?
https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923

Here is another discussion on tapering down for prednisone:
https://connect.mayoclinic.org/discussion/prednisone/

Both occurrences of PMR I started on 20 mg of prednisone and each week I tried to go down by half the dosage and realized it was too big of a jump so decreased the amount. What helped me is tracking the daily dosage and the pain level. I also had the doctor prescribe different sizes of the prednisone tablets – 20, 10, 5, 2.5, and 1 mg. I would also break the tabs in half with a pill cutter if I was in between a dose where I had too much pain. I think it's important to work with your doctor and come up with a tapering schedule that works for you.

@rogernj67, can I ask what daily dosage you are currently on?

John

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Well, when I saw the Rheum. he said try 5mg and if needed go ton10 per day. So what I am trying is 7 or 8 in the morning ( I just took 8 at 9am today) and 2 or 3 before bed. I left a message with him Friday to see if he thinks this is ok. I simply will not take these things like cough drops but want to get in remission as soon as I can. I feel like I have no life now and it is very depressing for someone who was a long distance walker. Thanks, john

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@rogernj67

Well, when I saw the Rheum. he said try 5mg and if needed go ton10 per day. So what I am trying is 7 or 8 in the morning ( I just took 8 at 9am today) and 2 or 3 before bed. I left a message with him Friday to see if he thinks this is ok. I simply will not take these things like cough drops but want to get in remission as soon as I can. I feel like I have no life now and it is very depressing for someone who was a long distance walker. Thanks, john

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I agree with you. The goal is to get off prednisone as soon as you can. The can being when the pain is manageable or gone. The first time I had to be on it for a little over three years. The second time it was about a year and a half.

Liked by Dee

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@johnbishop

I agree with you. The goal is to get off prednisone as soon as you can. The can being when the pain is manageable or gone. The first time I had to be on it for a little over three years. The second time it was about a year and a half.

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When it went away the first time and you were good for six years….do you mean you felt the way you did before you even heard of this thing? Just curious about what to expect.

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@rogernj67

When it went away the first time and you were good for six years….do you mean you felt the way you did before you even heard of this thing? Just curious about what to expect.

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When it went away the first time I felt pretty good and about the same as before. For me there was such a sharp difference in the pain level when the PMR was active and when it went into remission. For the first week or so after I stopped taking the prednisone I had a little pain but nothing like before. I think that may be part of the withdrawal from prednisone. The second time it was a little easier for me because I knew what to expect and I pushed a little getting off of the prednisone. The first occurrence I was going back and forth each week the last six months between 1 mg and 1/2 mg until I could finally stop taking the prednisone with a little ache but not real pain.

Liked by Dee

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@rogernj67

Thanks Beryl. I sure could use the support as I am just overwhelmed by all this. I watched my father suffer for many years with RA. I guess there is also a hereditary component to this .Thing about it is my absolute worse pain is in both knees. Ortho says I have some arthritis and meniscus tears. I also have the upper arm pain, shoulder, neck, and thigh and buttock pain.

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Roger I can't get back to you right now as I have people staying but will,write soon Beryl

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