Share this:
Dee
@danielad

Posts: 38
Joined: Jun 27, 2016

New Diagnosis of Polymyalgia Rheumatica (Husband)

Posted by @danielad, Wed, Aug 8 6:21pm

Hello Justin and all!

I am new in this group and would appreciate your advices on the subject of Polymyalgia Rheumatica (PMR). My husband, John has FINALLY been diagnosed with this disease last week. I did research every respectable website and found a number of articles and past studies as well. Now I need “human interaction”; people who may have PMR and would like to discuss their experiences. I believe that will help us a great deal!

This is John’s story: He is 76 and has Peripheral Neuropathy of the extremities — Feet, legs up to the knees, and at a lesser level, hands and forearms. The cause was first thought to be “Charcot-Marie-Tooth, type 2A” (CMT2A), an hereditary neuropathy. Now (nearly 20 yrs later), they are not too sure. He has no neuropathic pain, but a severe loss of sensory perception. In spite of that, he has learned to walk and drive by “feeling” via the muscles in the thigh and his knees.

In any event, I believe this Neuropathy is an aggravating factor because, as I mentioned, John has a loss of sensory perception and he is unable to pinpoint the issues on the parts affected by the Neuropathy. So, when PMR started to interfere with his ability to walk and drive, he says he feels “weak and unsteady”. Before starting on 20mg of Prednisone, last week, there were days when he was totally unable to walk; however, he doesn’t know “what” is not working — The muscles in the lower/upper legs? Knees? Feet? It certainly isn’t easy!

His Sed rate is 36 and C-reactive Protein is 55.3. If these values don’t go down, the Rheumatologist said she will need to increase the Prednisone.

Speaking of Prednisone — It was a “MIRACLE” medicine (20mg per day) at first! ALL symptoms went away within 2 hrs of taking the first dose! But on the 3rd day, the pain, weakness, and unsteadiness started to come back every now and then. We are at the 6th day since the diagnosis and since John started on Prednisone. What do you think of that?

Thank you for “reading” this long post. I promise to keep the future ones much shorter! And thank you in advance for any feedback, advice, or information you may want to send my way!

Hugs to all!

D.

REPLY

Hello Dannielad how horrible for you both , my name is Beryl and I have had this thing for ten years , been treated by OHSU in Portland and my starting point was 60 mg of prednisone and my sed. Rate,was 60 plus….I am very slowly recovering but not out of the wood by any means….don't know if I ever will be free of it I just hope and pray that I will for the families sake…..I am now 78…..I am now taking 3mg of pred. My doctor says just keep on three ….it is so debilitating and I try to carry on as best I can …..my husband is very good and takes the load , such as the gardening …..he has made me a couple of things that makes me able to weed my flower gardens …..good to have a partner that understands ……hope just somebody answering helps ….Beryl

Liked by Dee

Thanks for writing Beryl. Yes, it is tough, but it was worst last week, before the diagnosis! I was a lot more worried, not knowing what he had!

We should hear from the Rheumatologist tomorrow about his latest blood test for sed rate, CRP, and liver panel, so I will let her know he has ups and downs with the pain and weakness. It does seem strange, because John is still taking the same 20mg Prednisone since Wed. Do you know why that would happen?

Take care of yourself dear Beryl!

Daniela

My Rheumatologist would adjust the pred level with the sed rate …..maybe that is what will happen at you next appointment….also would tell me to take another 1mg if it was bad…..I am sure you will feel more comfortable with controlling the pain after you have seen her…..think it must take time to adjust …thank you for your nice words and look after yourselves Beryl

Liked by Dee

@beryl

My Rheumatologist would adjust the pred level with the sed rate …..maybe that is what will happen at you next appointment….also would tell me to take another 1mg if it was bad…..I am sure you will feel more comfortable with controlling the pain after you have seen her…..think it must take time to adjust …thank you for your nice words and look after yourselves Beryl

Jump to this post

Hello Beryl. Yes, I think you are right — We will both begin to feel more comfortable after we have had a little more time to see how PMR and Prednisone work and seeing how the rheumatologist wants to adjust the Prednisone.

Thanks Beryl!!! — Daniela

Good luck Daniela and John……Berylxx

Liked by Dee

@beryl

Good luck Daniela and John……Berylxx

Jump to this post

Hugs back!!! John and Daniela

Hello all!

My husband John received the diagnosis of Polymyalgia Rheurmatica last week. I researched every respectable website and found a number of articles and past studies as well. Now I need "human interaction"; people who may have PMR and would like to discuss their experiences. I believe that will help us a great deal!

This is John's story: He is 76 and has Peripheral Neuropathy of the extremities — Feet, legs up to the knees, and at a lesser level, hands and forearms. The cause was first thought to be "Charcot-Marie-Tooth, type 2A" (CMT2A), an hereditary neuropathy. Now (nearly 20 yrs later), they are not too sure. He has no neuropathic pain, but a severe loss of periphery sensory perception. In spite of that, he has learned to walk and drive by "feeling" via the muscles in the thigh and his knees.

I believe this Neuropathy is an aggravating factor because, as I mentioned, John has a loss of sensory perception and he is unable to pinpoint the issues on/in the parts affected by the Neuropathy. So, when PMR started to interfere with his ability to walk and drive, he became very "weak and unsteady". Before starting on 20mg of Prednisone, last week, there were days when he was totally unable to walk; however, as I mentioned, he doesn't know "what" is not working — Is it the muscles in the lower/upper legs? Knees? Feet? It certainly isn't easy!

His Sed rate is 36 and C-reactive Protein is 55.3. If these values don't go down, the Rheumatologist said she will need to increase the Prednisone.

Speaking of Prednisone — It was a "MIRACLE" medicine (20mg per day) at first! ALL symptoms went away within 2 hrs of taking the first dose! But on the 3rd day, the pain, weakness, and unsteadiness started to come back every now and then. We are at the 6th day since the diagnosis and since John started on Prednisone. What do you think of that?

Thank you for "reading" this long post. I promise to keep the future ones much shorter! And thank you in advance for any feedback, advice, or information you may want to send my way!

Hugs to all!

D.

Hi @danielad Dee,
You’ll notice that I merged the new message you posted about polymyalgia rheumatica in Autoimmune Diseases group to the same discussion you started yesterday in the Bones, Joints & Muscles group. I did this so that everyone can be brought into the same area to connect and chat.

Most of the discussions about PMR can be found in the Autoimmune Diseases group. https://connect.mayoclinic.org/group/autoimmune-diseases/ I invite you to explore them and ask questions. In those discussions you’ll meet @beryl and @johnbishop and others. You might like to start with this one:
https://connect.mayoclinic.org/discussion/poly-myalgia-rheumatica/

You might also be interested in following the Neuropthy group https://connect.mayoclinic.org/group/neuropathy/

@colleenyoung

Hi @danielad Dee,
You’ll notice that I merged the new message you posted about polymyalgia rheumatica in Autoimmune Diseases group to the same discussion you started yesterday in the Bones, Joints & Muscles group. I did this so that everyone can be brought into the same area to connect and chat.

Most of the discussions about PMR can be found in the Autoimmune Diseases group. https://connect.mayoclinic.org/group/autoimmune-diseases/ I invite you to explore them and ask questions. In those discussions you’ll meet @beryl and @johnbishop and others. You might like to start with this one:
https://connect.mayoclinic.org/discussion/poly-myalgia-rheumatica/

You might also be interested in following the Neuropthy group https://connect.mayoclinic.org/group/neuropathy/

Jump to this post

Thank you Colleen!!!

@danielad

Hello all!

My husband John received the diagnosis of Polymyalgia Rheurmatica last week. I researched every respectable website and found a number of articles and past studies as well. Now I need "human interaction"; people who may have PMR and would like to discuss their experiences. I believe that will help us a great deal!

This is John's story: He is 76 and has Peripheral Neuropathy of the extremities — Feet, legs up to the knees, and at a lesser level, hands and forearms. The cause was first thought to be "Charcot-Marie-Tooth, type 2A" (CMT2A), an hereditary neuropathy. Now (nearly 20 yrs later), they are not too sure. He has no neuropathic pain, but a severe loss of periphery sensory perception. In spite of that, he has learned to walk and drive by "feeling" via the muscles in the thigh and his knees.

I believe this Neuropathy is an aggravating factor because, as I mentioned, John has a loss of sensory perception and he is unable to pinpoint the issues on/in the parts affected by the Neuropathy. So, when PMR started to interfere with his ability to walk and drive, he became very "weak and unsteady". Before starting on 20mg of Prednisone, last week, there were days when he was totally unable to walk; however, as I mentioned, he doesn't know "what" is not working — Is it the muscles in the lower/upper legs? Knees? Feet? It certainly isn't easy!

His Sed rate is 36 and C-reactive Protein is 55.3. If these values don't go down, the Rheumatologist said she will need to increase the Prednisone.

Speaking of Prednisone — It was a "MIRACLE" medicine (20mg per day) at first! ALL symptoms went away within 2 hrs of taking the first dose! But on the 3rd day, the pain, weakness, and unsteadiness started to come back every now and then. We are at the 6th day since the diagnosis and since John started on Prednisone. What do you think of that?

Thank you for "reading" this long post. I promise to keep the future ones much shorter! And thank you in advance for any feedback, advice, or information you may want to send my way!

Hugs to all!

D.

Jump to this post

Hi Dee @danielad, reading your post sounds like I have a lot in common with your husband including my first name John. I have had two episodes of polymyalgia rheumatica (PMR) and I was also treated starting with 20 mg of prednisone. My first episode was in 2007 and I was finally able to taper off of prednisone in 2010. It stayed in remission until 2016 and again I was put on 20 mg of prednisone. This time I was able to taper off in about 1-1/2 years. So far it has not come back. Prednisone is indeed the miracle drug for PMR. My first occurrence was was almost exactly like your husbands, within 2 or 3 hours of taking the first pill I was feeling much better and was able to walk normal.

The only side effect for me on the prednisone was a hefty weight gain the first time around. I was able to control it more the second time around because I was a little more proactive. One of the keys is getting some exercise daily but not overdoing it. I'm 75 and I also have idiopathic small fiber peripheral neuropathy but just in both feet and legs. Like your husband I only have the numbness associated with the neuropathy and I'm thankful that I don't have any pain with it. I first found Mayo Connect when I was searching for a support group for my small fiber PN and it is a great resource of information with many members able to share what works for them and treatments they have tried. Here's a link to my story on Connect if you want more information on my searching for help:
https://connect.mayoclinic.org/comment/65985/bookmark/?ajax_hook=action&_wpnonce=6144dd1510

Thank you for being an advocate for your husband. The most important advice I can offer is to learn as much as you can about his health condition. The more you know, the better questions you can ask his doctors and hopefully the better the treatment outcome.

If you are reading through the discussions that Colleen @colleenyoung shared her post and you want to ask a specific member a question just tag them by using their member name for example to make sure I am notified of a question just use @johnbishop.

Best of luck and keep asking questions!

John

@danielad

Hello all!

My husband John received the diagnosis of Polymyalgia Rheurmatica last week. I researched every respectable website and found a number of articles and past studies as well. Now I need "human interaction"; people who may have PMR and would like to discuss their experiences. I believe that will help us a great deal!

This is John's story: He is 76 and has Peripheral Neuropathy of the extremities — Feet, legs up to the knees, and at a lesser level, hands and forearms. The cause was first thought to be "Charcot-Marie-Tooth, type 2A" (CMT2A), an hereditary neuropathy. Now (nearly 20 yrs later), they are not too sure. He has no neuropathic pain, but a severe loss of periphery sensory perception. In spite of that, he has learned to walk and drive by "feeling" via the muscles in the thigh and his knees.

I believe this Neuropathy is an aggravating factor because, as I mentioned, John has a loss of sensory perception and he is unable to pinpoint the issues on/in the parts affected by the Neuropathy. So, when PMR started to interfere with his ability to walk and drive, he became very "weak and unsteady". Before starting on 20mg of Prednisone, last week, there were days when he was totally unable to walk; however, as I mentioned, he doesn't know "what" is not working — Is it the muscles in the lower/upper legs? Knees? Feet? It certainly isn't easy!

His Sed rate is 36 and C-reactive Protein is 55.3. If these values don't go down, the Rheumatologist said she will need to increase the Prednisone.

Speaking of Prednisone — It was a "MIRACLE" medicine (20mg per day) at first! ALL symptoms went away within 2 hrs of taking the first dose! But on the 3rd day, the pain, weakness, and unsteadiness started to come back every now and then. We are at the 6th day since the diagnosis and since John started on Prednisone. What do you think of that?

Thank you for "reading" this long post. I promise to keep the future ones much shorter! And thank you in advance for any feedback, advice, or information you may want to send my way!

Hugs to all!

D.

Jump to this post

Daniela how is John doing ? Beryl

Liked by Dee

@danielad

Hello all!

My husband John received the diagnosis of Polymyalgia Rheurmatica last week. I researched every respectable website and found a number of articles and past studies as well. Now I need "human interaction"; people who may have PMR and would like to discuss their experiences. I believe that will help us a great deal!

This is John's story: He is 76 and has Peripheral Neuropathy of the extremities — Feet, legs up to the knees, and at a lesser level, hands and forearms. The cause was first thought to be "Charcot-Marie-Tooth, type 2A" (CMT2A), an hereditary neuropathy. Now (nearly 20 yrs later), they are not too sure. He has no neuropathic pain, but a severe loss of periphery sensory perception. In spite of that, he has learned to walk and drive by "feeling" via the muscles in the thigh and his knees.

I believe this Neuropathy is an aggravating factor because, as I mentioned, John has a loss of sensory perception and he is unable to pinpoint the issues on/in the parts affected by the Neuropathy. So, when PMR started to interfere with his ability to walk and drive, he became very "weak and unsteady". Before starting on 20mg of Prednisone, last week, there were days when he was totally unable to walk; however, as I mentioned, he doesn't know "what" is not working — Is it the muscles in the lower/upper legs? Knees? Feet? It certainly isn't easy!

His Sed rate is 36 and C-reactive Protein is 55.3. If these values don't go down, the Rheumatologist said she will need to increase the Prednisone.

Speaking of Prednisone — It was a "MIRACLE" medicine (20mg per day) at first! ALL symptoms went away within 2 hrs of taking the first dose! But on the 3rd day, the pain, weakness, and unsteadiness started to come back every now and then. We are at the 6th day since the diagnosis and since John started on Prednisone. What do you think of that?

Thank you for "reading" this long post. I promise to keep the future ones much shorter! And thank you in advance for any feedback, advice, or information you may want to send my way!

Hugs to all!

D.

Jump to this post

Hi Beryl,

I was just writing you and the entire thing went "PUFF" into space!!! Any idea as to how to "recover" what I was writing?

Thanks! Daniela

@danielad

Hello all!

My husband John received the diagnosis of Polymyalgia Rheurmatica last week. I researched every respectable website and found a number of articles and past studies as well. Now I need "human interaction"; people who may have PMR and would like to discuss their experiences. I believe that will help us a great deal!

This is John's story: He is 76 and has Peripheral Neuropathy of the extremities — Feet, legs up to the knees, and at a lesser level, hands and forearms. The cause was first thought to be "Charcot-Marie-Tooth, type 2A" (CMT2A), an hereditary neuropathy. Now (nearly 20 yrs later), they are not too sure. He has no neuropathic pain, but a severe loss of periphery sensory perception. In spite of that, he has learned to walk and drive by "feeling" via the muscles in the thigh and his knees.

I believe this Neuropathy is an aggravating factor because, as I mentioned, John has a loss of sensory perception and he is unable to pinpoint the issues on/in the parts affected by the Neuropathy. So, when PMR started to interfere with his ability to walk and drive, he became very "weak and unsteady". Before starting on 20mg of Prednisone, last week, there were days when he was totally unable to walk; however, as I mentioned, he doesn't know "what" is not working — Is it the muscles in the lower/upper legs? Knees? Feet? It certainly isn't easy!

His Sed rate is 36 and C-reactive Protein is 55.3. If these values don't go down, the Rheumatologist said she will need to increase the Prednisone.

Speaking of Prednisone — It was a "MIRACLE" medicine (20mg per day) at first! ALL symptoms went away within 2 hrs of taking the first dose! But on the 3rd day, the pain, weakness, and unsteadiness started to come back every now and then. We are at the 6th day since the diagnosis and since John started on Prednisone. What do you think of that?

Thank you for "reading" this long post. I promise to keep the future ones much shorter! And thank you in advance for any feedback, advice, or information you may want to send my way!

Hugs to all!

D.

Jump to this post

Oh how annoying , no I don't know how to get things back maybe someone else will tell us?

It was nice to her from you because I have been wondering..

One thing that occurred to me was…….I have a heat pad under the bottom sheet of my bed ….it is very comforting and helps my legs to relax ….if you think this would help John I will send you the details of the one I have as some of them are too hot and not good at all……regards Berylx

@danielad

Hello all!

My husband John received the diagnosis of Polymyalgia Rheurmatica last week. I researched every respectable website and found a number of articles and past studies as well. Now I need "human interaction"; people who may have PMR and would like to discuss their experiences. I believe that will help us a great deal!

This is John's story: He is 76 and has Peripheral Neuropathy of the extremities — Feet, legs up to the knees, and at a lesser level, hands and forearms. The cause was first thought to be "Charcot-Marie-Tooth, type 2A" (CMT2A), an hereditary neuropathy. Now (nearly 20 yrs later), they are not too sure. He has no neuropathic pain, but a severe loss of periphery sensory perception. In spite of that, he has learned to walk and drive by "feeling" via the muscles in the thigh and his knees.

I believe this Neuropathy is an aggravating factor because, as I mentioned, John has a loss of sensory perception and he is unable to pinpoint the issues on/in the parts affected by the Neuropathy. So, when PMR started to interfere with his ability to walk and drive, he became very "weak and unsteady". Before starting on 20mg of Prednisone, last week, there were days when he was totally unable to walk; however, as I mentioned, he doesn't know "what" is not working — Is it the muscles in the lower/upper legs? Knees? Feet? It certainly isn't easy!

His Sed rate is 36 and C-reactive Protein is 55.3. If these values don't go down, the Rheumatologist said she will need to increase the Prednisone.

Speaking of Prednisone — It was a "MIRACLE" medicine (20mg per day) at first! ALL symptoms went away within 2 hrs of taking the first dose! But on the 3rd day, the pain, weakness, and unsteadiness started to come back every now and then. We are at the 6th day since the diagnosis and since John started on Prednisone. What do you think of that?

Thank you for "reading" this long post. I promise to keep the future ones much shorter! And thank you in advance for any feedback, advice, or information you may want to send my way!

Hugs to all!

D.

Jump to this post

Argh! Hate it when that happens @danielad. I've had it happen a few times when I'm posting and type a lot of stuff then switch to another window or hit the wrong key and the information I typed is gone. Not too big of a deal if it's something short. Sometimes if I know I'm going to write a few paragraphs I will use notepad on the computer and then cut and paste from notepad into a post.

John

@danielad

Hello all!

My husband John received the diagnosis of Polymyalgia Rheurmatica last week. I researched every respectable website and found a number of articles and past studies as well. Now I need "human interaction"; people who may have PMR and would like to discuss their experiences. I believe that will help us a great deal!

This is John's story: He is 76 and has Peripheral Neuropathy of the extremities — Feet, legs up to the knees, and at a lesser level, hands and forearms. The cause was first thought to be "Charcot-Marie-Tooth, type 2A" (CMT2A), an hereditary neuropathy. Now (nearly 20 yrs later), they are not too sure. He has no neuropathic pain, but a severe loss of periphery sensory perception. In spite of that, he has learned to walk and drive by "feeling" via the muscles in the thigh and his knees.

I believe this Neuropathy is an aggravating factor because, as I mentioned, John has a loss of sensory perception and he is unable to pinpoint the issues on/in the parts affected by the Neuropathy. So, when PMR started to interfere with his ability to walk and drive, he became very "weak and unsteady". Before starting on 20mg of Prednisone, last week, there were days when he was totally unable to walk; however, as I mentioned, he doesn't know "what" is not working — Is it the muscles in the lower/upper legs? Knees? Feet? It certainly isn't easy!

His Sed rate is 36 and C-reactive Protein is 55.3. If these values don't go down, the Rheumatologist said she will need to increase the Prednisone.

Speaking of Prednisone — It was a "MIRACLE" medicine (20mg per day) at first! ALL symptoms went away within 2 hrs of taking the first dose! But on the 3rd day, the pain, weakness, and unsteadiness started to come back every now and then. We are at the 6th day since the diagnosis and since John started on Prednisone. What do you think of that?

Thank you for "reading" this long post. I promise to keep the future ones much shorter! And thank you in advance for any feedback, advice, or information you may want to send my way!

Hugs to all!

D.

Jump to this post

Hi Beryl – Yes, it is soooo annoying losing what you were writing! I discovered that if I am using the cellphone, as I am doing now, I can recover the "page" I was on and continue where I left off. However, I was on my laptop!

About the information on the heating pad — Yes, please! I would welcome your information, it may help John to relax!

Thanks Beryl!
Daniela

Please login or register to post a reply.