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Dee
@danielad

Posts: 38
Joined: Jun 27, 2016

New Diagnosis of Polymyalgia Rheumatica (Husband)

Posted by @danielad, Aug 8, 2018

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

@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.

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You are right Beryl, there is a lot of strain on the partner! Thanks for the reminder!! D

I received a Mayo Newsletter that had a good article on Exercise helps ease arthritis pain and stiffness. Exercise has helped me but I've learned not to over do it ☺

Exercise helps ease arthritis pain and stiffness
https://www.mayoclinic.org/diseases-conditions/arthritis/in-depth/arthritis/art-20047971

John

Liked by Dee

Thanks!

@beryl

No John I not on a high dosage of preds , three Mgs , and I have to juggle this according to my pain level…..

No I have not had any other than pres. for treatment …..Beryl

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@beryl excuse me for jumping in here did you ask Dr.about how you can take it safely If to long it can affect your kidneys Its a great drug but does have this draw back just giving info from a retired nurse

@beryl

No John I not on a high dosage of preds , three Mgs , and I have to juggle this according to my pain level…..

No I have not had any other than pres. for treatment …..Beryl

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Hello Lioness thank you for yr concern but I am very well looked after and checked by OHSU in Portland and have been for the whole time of this thing starting ten years ago,…..any worries I can contact my Dr inbetween visits…..yes it is not a nice thing to have to take and would so like to get off of it …..
….Beryl..

@beryl

No John I not on a high dosage of preds , three Mgs , and I have to juggle this according to my pain level…..

No I have not had any other than pres. for treatment …..Beryl

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@beryl Im glad to hear this just making sure

Liked by Dee

Hi Dee
@danielad, it is not only the pain of one person, but might be many of people out there who are suffering the same symptoms; however we believe medical and science researches are in good hands that will be able to get therapeutic treatments for those who are living with same kind of symptoms. As you mentioned and I understand that your husband's case is as you said in summary (His Sed rate is 36 and C-reactive Protein is 55.3. If these values don’t go down, the Rheumotalogist said she will need to increase the Prednisone). First I have in mind a question, and that is what type of Physician (specialty I mean) you referred to him/her in the diagnosis of your husband ? And the second, did they refer you to the lab to measure the muscles effectiveness? In the muscles test they put electrodes on muscles and get results, and depending on the result they can give treatment. That is available at mayo clinic even the cost is a little high and I am not sure if all insurances companies pay for it. It also might lead to surgery at the end to help the patient surviving the symptoms.
I hope you get what you are looking in my suggestions, and you do not have to be abide by my post and suggestions.
Wishing you good luck and wishing your husband getting well soon!

@1000016352

Hi Dee
@danielad, it is not only the pain of one person, but might be many of people out there who are suffering the same symptoms; however we believe medical and science researches are in good hands that will be able to get therapeutic treatments for those who are living with same kind of symptoms. As you mentioned and I understand that your husband's case is as you said in summary (His Sed rate is 36 and C-reactive Protein is 55.3. If these values don’t go down, the Rheumotalogist said she will need to increase the Prednisone). First I have in mind a question, and that is what type of Physician (specialty I mean) you referred to him/her in the diagnosis of your husband ? And the second, did they refer you to the lab to measure the muscles effectiveness? In the muscles test they put electrodes on muscles and get results, and depending on the result they can give treatment. That is available at mayo clinic even the cost is a little high and I am not sure if all insurances companies pay for it. It also might lead to surgery at the end to help the patient surviving the symptoms.
I hope you get what you are looking in my suggestions, and you do not have to be abide by my post and suggestions.
Wishing you good luck and wishing your husband getting well soon!

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Hello @1000016352 and thank you for the comments and advice.

To answer your questions — Our Primary physician referred us to the Rheumatologist. She was very thorough and ran more tests (Blood work). The results did not show any autoimmune disease such as Rheumatoid Arthritis (RA), something which is in my husband family (sister, maybe mother). She started him on 20 mg of Prednisone, and within the first few hours he was as good as new. This is what helped her in diagnosing my husband with PMR.

The Rheumatologist did not send us for muscle testing. Thank you for mentioning it! We have an appointment with her on Monday, and we can ask that question!!

Enjoy your day! D.

PMR often coexists with GCA. I have not been able to find another person with GCA so I started reading the PMR comments. GCA stands for giant cell arteritis. Started 3 years ago with vision loss in right eye which returned in about 5 minutes and jaw pain while chewing. I was in Banner Boswell hospital and told it was not GCA but possibly migraine starting in eye but not going to brain and jaw was TMJ. I went to another hospital a few months later because blindness happening several times a week. They did a biopsy and confirmed GCA. Put on 60 mg prednisone for 3 months with methotrexate added after 6 weeks. Slowly reduced prednisone, down to 4 milligrams by last spring, still on methotrexate, when C reactive protein tests started climbing. Now my Doc wants me to go on Actemra,(tocilizumab) fusions once a month for life?? I would prefer to just up the prednisone. Any ideas, any body?

You are not alone elderdiana I too have GCA, was confirmed early on in my PMR treatment…..I am ok thankfully as I am under a wonderful Hosptilal in Portland Oregon …OHSU……I am sorry you are having trouble but you are not on your own…..let us know how you get on…..Beryl

@elderdiana

PMR often coexists with GCA. I have not been able to find another person with GCA so I started reading the PMR comments. GCA stands for giant cell arteritis. Started 3 years ago with vision loss in right eye which returned in about 5 minutes and jaw pain while chewing. I was in Banner Boswell hospital and told it was not GCA but possibly migraine starting in eye but not going to brain and jaw was TMJ. I went to another hospital a few months later because blindness happening several times a week. They did a biopsy and confirmed GCA. Put on 60 mg prednisone for 3 months with methotrexate added after 6 weeks. Slowly reduced prednisone, down to 4 milligrams by last spring, still on methotrexate, when C reactive protein tests started climbing. Now my Doc wants me to go on Actemra,(tocilizumab) fusions once a month for life?? I would prefer to just up the prednisone. Any ideas, any body?

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Hello @elderdiana
Welcome to Connect. There are two other discussions that you might want to join specifically talking about Giant Cell Arteritis (GCA). @beryl you might also want to join these discussions to meet others and see what they are doing for treatments:

Groups > Autoimmune Diseases > Temperol Arteritis or Giant Cell Arteritis
https://connect.mayoclinic.org/discussion/temperol-arteritis-or-giant-cell-arteritis/?pg=1

Groups > Autoimmune Diseases > giant cell arteritis
https://connect.mayoclinic.org/discussion/giant-cell-arteritis-20c716/

Groups > Stroke & Cerebrovascular Diseases > Adjusting to life with temporal arteritis
https://connect.mayoclinic.org/discussion/would-like-to-hear-from-people-that-have-gone-thru-or-going/

@elderdiana I would recommend dicussing your preference with your doctor to understand all the side effects for long term use of prednisone vs having the fusions once a month for life. None of us are medical professionals and not able to give advice other than sharing our own experiences. Do you have any reasons for wanting to just up the prednisone?

John

@elderdiana

PMR often coexists with GCA. I have not been able to find another person with GCA so I started reading the PMR comments. GCA stands for giant cell arteritis. Started 3 years ago with vision loss in right eye which returned in about 5 minutes and jaw pain while chewing. I was in Banner Boswell hospital and told it was not GCA but possibly migraine starting in eye but not going to brain and jaw was TMJ. I went to another hospital a few months later because blindness happening several times a week. They did a biopsy and confirmed GCA. Put on 60 mg prednisone for 3 months with methotrexate added after 6 weeks. Slowly reduced prednisone, down to 4 milligrams by last spring, still on methotrexate, when C reactive protein tests started climbing. Now my Doc wants me to go on Actemra,(tocilizumab) fusions once a month for life?? I would prefer to just up the prednisone. Any ideas, any body?

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Hello @elderdiana

So sorry you had to go through all of that, before you were correctly diagnosed!

My husband John had some symptoms of GCA and he was sent right away to see an eye specialist. Thankfully, he doesn't have GCA, but I became a tad more informed about it; so I can tell you that IF my husband had been diagnosed with GCA, he would have been treated with 60 mg of Prednisone and Methotrexate as well. Our Rheumatologist did not address Actemra; so I don't have any information on it … sorry! But others may well had that experience, as @johnbishop mentioned in his post.

Let us know how you are and what you decide to do. D.

It's amazing how many doctors don't even knw anything about Polymyalgia and many nurses have never heard of it. I was misdiagnosed 3 times by doctors before my nurse practioner got it right.

Liked by Dee

@beryl

You are not alone elderdiana I too have GCA, was confirmed early on in my PMR treatment…..I am ok thankfully as I am under a wonderful Hosptilal in Portland Oregon …OHSU……I am sorry you are having trouble but you are not on your own…..let us know how you get on…..Beryl

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Hello Beryl,

This is not about PMR or GCA, but I wonder if this information could help you with respect to "eye support":

I have just found out that I have one of the traits for "Macular Degeneration" and my eye doctor saw the very beginning of MD in one of my eyes (he didn't know about my trait!). When he told me that, I asked what I should do to "prevent" this from occurring. He said to use very good sun glasses and he also recommended "PreserVision® AREDS 2 Formula" — It's an over-the-counter supplement for the eyes. He said he has had excellent reviews from his patients. I have just ordered a bottle from Amazon. It is quite a bit cheaper than CVS.

Should you want to try the supplement, I would certainly ask your doctor if it is OK to add it to your meds; you never know!

D.

@edithmiller

It's amazing how many doctors don't even knw anything about Polymyalgia and many nurses have never heard of it. I was misdiagnosed 3 times by doctors before my nurse practioner got it right.

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I do understand Edith! My husband has had plenty of symptoms for years … Until it got so bad, in the last few months, he couldn't even get up from a chair by himself, or walk!! Finally, we went to the Rheumatologist … and found out he had PMR!!!

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