1. < Autoimmune Diseases

Dermatomyositis Flare: How long does it take for the meds to build up?

Posted by livinglife1 @livinglife1, Oct 27 12:40pm

Newly diagnosed in August 24….Seemed like I had a good week. All of a sudden yesterday hit with feels like a set back of muscle fatigue where I first had it in my arms. I haven’t felt fatigue or tingling there since my first flare/diagnosis. I’ve been on Methotrexate, Prednisone, Hydroxychloroquine and IVIG (3, 5day rounds) since August. Tapering prednisone but been on 25 for 2 weeks now so I dont feel like it’s a tapering issue. I don’t know. ….How long does it take for the meds to build up? Been on them since 8/12/24. Have another appt at Mayo in a week. Any and all thoughts would be appreciated. 😊

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 28 4:14pm

@livinglife1, I'm sorry to hear about your flare after a seemingly good week. Such is the gift of many autoimmune conditions, isn't it? I'm tagging members like @kathrynmc @amberrose @brfire63 @kleffew @sinojosvacios @buttons @cantek to share their experiences with dermatomyositis flares and managing with medication.

Livinglife, you said that you don't feel like it is a tapering issue. Is there any other trigger that you suspect may have contributed to the flare?

REPLY
livinglife1 | @livinglife1 | Oct 28 7:41pm

Nothing that I can pinpoint…I don’t really know what a flare is. Still in the beginning of this. Still on prednisone and trying to taper….the prednisone itself seems evil to my body. Shakes, tingling, mind going in all different directions, emotional…. Is the methotrexate working? How will I know? Will this get any better with time ? I apologize for all the questions and emotions.

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slkanowitz | @slkanowitz | Oct 30 3:18am

Since you have been on the methotrexate and hydroxychloroquine for 2 1/2 months, you’re almost there. It typically takes about three months, sometimes a little longer for both of those medications to build up and level off. It does sound like you have experienced a flare and hopefully they will be in frequent and mild as your treatment becomes more effective. As the MTX and HCQ build up, you are tapering the prednisone which is a good plan for treatment. In the future, if you experience a flare, your doctor may have you bump up the prednisone dose for a short while to get you over the hump. your treatment plan is very similar to the treatment for many other autoimmune disorders as well. The MTX and HCQ doses can be modified to get you to the minimum prednisone dose possible to avoid the long-term side effects. This will get better with time and fine tuning your medication doses. Unfortunately, it also requires modification of your lifestyle in that you must be flexible and prepared for the unexpected. Flares can occur spontaneously. There is not always a trigger involved. I am sorry you’re experiencing this, but it seems your doctors are being aggressive at treating it and getting your symptoms under control. You will find many people here who are living with similar conditions who will be helpful with information and encouragement.

REPLY
3 replies
kleffew | @kleffew | Oct 30 7:33am
In reply to @slkanowitz "Since you have been on the methotrexate and hydroxychloroquine for 2 1/2 months, you’re almost there...." + (show)
@slkanowitz

Since you have been on the methotrexate and hydroxychloroquine for 2 1/2 months, you’re almost there. It typically takes about three months, sometimes a little longer for both of those medications to build up and level off. It does sound like you have experienced a flare and hopefully they will be in frequent and mild as your treatment becomes more effective. As the MTX and HCQ build up, you are tapering the prednisone which is a good plan for treatment. In the future, if you experience a flare, your doctor may have you bump up the prednisone dose for a short while to get you over the hump. your treatment plan is very similar to the treatment for many other autoimmune disorders as well. The MTX and HCQ doses can be modified to get you to the minimum prednisone dose possible to avoid the long-term side effects. This will get better with time and fine tuning your medication doses. Unfortunately, it also requires modification of your lifestyle in that you must be flexible and prepared for the unexpected. Flares can occur spontaneously. There is not always a trigger involved. I am sorry you’re experiencing this, but it seems your doctors are being aggressive at treating it and getting your symptoms under control. You will find many people here who are living with similar conditions who will be helpful with information and encouragement.

Jump to this post

I have been dealing with this disease for 7 years.My best advice really pay attention to your body.It will tell you before that player comes for Force and upping.Your pregnancy will help bless you

REPLY
1 reply
kleffew | @kleffew | Oct 30 7:33am
In reply to @kleffew "I have been dealing with this disease for 7 years.My best advice really pay attention to..." + (show)
@kleffew

I have been dealing with this disease for 7 years.My best advice really pay attention to your body.It will tell you before that player comes for Force and upping.Your pregnancy will help bless you

Jump to this post

Flare

REPLY
1 reply
livinglife1 | @livinglife1 | Oct 30 11:30am
In reply to @slkanowitz "Since you have been on the methotrexate and hydroxychloroquine for 2 1/2 months, you’re almost there...." + (show)
@slkanowitz

Since you have been on the methotrexate and hydroxychloroquine for 2 1/2 months, you’re almost there. It typically takes about three months, sometimes a little longer for both of those medications to build up and level off. It does sound like you have experienced a flare and hopefully they will be in frequent and mild as your treatment becomes more effective. As the MTX and HCQ build up, you are tapering the prednisone which is a good plan for treatment. In the future, if you experience a flare, your doctor may have you bump up the prednisone dose for a short while to get you over the hump. your treatment plan is very similar to the treatment for many other autoimmune disorders as well. The MTX and HCQ doses can be modified to get you to the minimum prednisone dose possible to avoid the long-term side effects. This will get better with time and fine tuning your medication doses. Unfortunately, it also requires modification of your lifestyle in that you must be flexible and prepared for the unexpected. Flares can occur spontaneously. There is not always a trigger involved. I am sorry you’re experiencing this, but it seems your doctors are being aggressive at treating it and getting your symptoms under control. You will find many people here who are living with similar conditions who will be helpful with information and encouragement.

Jump to this post

Thank you so much for your response. This has been so confusing in so many ways for me. Wondering is anything is working or will work…will I have some type of life back at any point…I’m hearing that patience is needed. I think the prednisone side effects are horrible but needed. Tapering is difficult.
You give me confidence that I’m on the right track. Thank you for that. Taking a toll mentally as well so I appreciate your words.

REPLY
bettyannh | @bettyannh | Oct 31 10:09am
In reply to @slkanowitz "Since you have been on the methotrexate and hydroxychloroquine for 2 1/2 months, you’re almost there...." + (show)
@slkanowitz

Since you have been on the methotrexate and hydroxychloroquine for 2 1/2 months, you’re almost there. It typically takes about three months, sometimes a little longer for both of those medications to build up and level off. It does sound like you have experienced a flare and hopefully they will be in frequent and mild as your treatment becomes more effective. As the MTX and HCQ build up, you are tapering the prednisone which is a good plan for treatment. In the future, if you experience a flare, your doctor may have you bump up the prednisone dose for a short while to get you over the hump. your treatment plan is very similar to the treatment for many other autoimmune disorders as well. The MTX and HCQ doses can be modified to get you to the minimum prednisone dose possible to avoid the long-term side effects. This will get better with time and fine tuning your medication doses. Unfortunately, it also requires modification of your lifestyle in that you must be flexible and prepared for the unexpected. Flares can occur spontaneously. There is not always a trigger involved. I am sorry you’re experiencing this, but it seems your doctors are being aggressive at treating it and getting your symptoms under control. You will find many people here who are living with similar conditions who will be helpful with information and encouragement.

Jump to this post

This is such good info. I have had ADM (amyopathic dem) since I was 52. I am now 79. First, find the right doctor. That often takes time. Then be patient.
It takes time, but things do get better.

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Oct 31 5:47pm
In reply to @bettyannh "This is such good info. I have had ADM (amyopathic dem) since I was 52. I..." + (show)
@bettyannh

This is such good info. I have had ADM (amyopathic dem) since I was 52. I am now 79. First, find the right doctor. That often takes time. Then be patient.
It takes time, but things do get better.

Jump to this post

@bettyannh Welcome to Mayo Clinic Connect! I’m glad that you found this group. I really like your suggestions, especially, “First, find the right doctor.”
How long did it take for you to find the right doctor and start treatment?

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1 reply
kleffew | @kleffew | Nov 1 6:32am
In reply to @kleffew "Flare" + (show)
@kleffew

Flare

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That should say prednisone my phone is crazy

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bettyannh | @bettyannh | Nov 1 8:53am
In reply to @becsbuddy "@bettyannh Welcome to Mayo Clinic Connect! I’m glad that you found this group. I really like..." + (show)
@becsbuddy

@bettyannh Welcome to Mayo Clinic Connect! I’m glad that you found this group. I really like your suggestions, especially, “First, find the right doctor.”
How long did it take for you to find the right doctor and start treatment?

Jump to this post

I went through 4 different doctors and several different diagnoses, but after 10 years., I found one that knew what I had. The earlier doctors would always give me prednisone and I would clear up, but only temporarily. Since finding my current doctor. I have had long breaks. I know I will never get completely away from this, but it is a big relief knowing I have help waiting

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