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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

@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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I had my left eye done two years ago D and I am just fine …..waiting for the other to be ready …..I certainly will not fear the op….so don't worry about it ….they say having to put the drops in after is the hardest thing Ha ha ……

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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@are they ready to be taken off I had cataract surgery in 09 on both eyes it sure does help you dont see or fee a thing

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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You are so funny @beryl! The Opthamologist doesn't see the need for surgery just yet. He said that maybe in 2/3 years John may need to have cataract surgery in one eye, but the doctor didn't see it happening before then. D

@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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Hi John. I am only on 3 mg now, so hopefully I can take a small increase. Also pages 24 through 31 regarding serious side effects in the booklet Actemra., concerns me due to my other medical problems. I feel great, never had any headach,etc. Three years ago, my right eye would go blind, then return to sight 5 min. Or so later. Also jaw discomfort while chewing. My primary care doc told me to go immediately to hosp. In sun city, Az. They did 2 days of testing, and said probably migraine headache starting in eye but not going to head, and jaw wasTMJ. They said was NOT temporal arteritis. Also that my ESR was only 47, and not that high for an old person. My primary doc said I should have had a biopsy and I went to a rummy doc who did some blood tests and ESR was 72 by then, and was sent to another hosp. Where the biopsy confirmed GCA. My vision problems started in August 2015 and got the right diagnosis in Dec. My eye doc said it was remarkable I was not blind. Last Halloween, I was at the Ritter Institute for back surgery. My surgeon said stay off that methotrexate until healed (8 weeks). I did and started having better blood reports. Wanted to stay off that methotrexate, but doc did not agree so still on 10 mg a week. Diana age 81.

@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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@elderdiana – Have you thought about going to Mayo Clinic in Phoenix to get a second opinion? I read about Actemra and agree that I would not like to be on the drug for the rest of my life. It sounds like you are continuing your taper and feel great. The Mayo in Minnesota sees the most cases of GCA so the doctors in Phoenix would be able to get a lot of information from the Minnesota doctors. Many of the people in Minnesota are from the Scandinavian countries so they see a lot of GCA. I certainly understand your reluctance to go on the Actemra.

@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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ooo. that is a better deal but can you use a coupon at Amazon? Otherwise, it's about the same.

@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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Thank you. Good idea. My rheumatologist says she has been dealing with this disease for years. This is the first time we are not in agreement, and I too think I need a second opinion,since she is so adamant. I have been seeing her for almost three years with blood tests every 6 weeks.

Liked by Dee

@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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@elderdiana – Let us know once you get your second opinion.

Liked by Dee

@jayflo

I was diagnosed with PMR on 8/1/18 and have been on prednisone, then added methotrexate 6 weeks ago, and still have pain, stiffness and spasms in my lower back and hamstrings bilaterally. Rheumatologist wants to start me on Actemra/Tocilizumab, given by infusion once a month. Anyone take this drug for PMR, were there any side effects, and did it work?

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Hi @jayflo, I thought you might be interested in the following information until a member who has taken Actemra/Tolcilizumab for PMR responds.

Tocilizumab is effective against polymyalgia rheumatica: experience in 13 intractable cases
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4663453/

Starting Actemra for PMR, RA and GCA looking for others currently using Actemra?
https://www.drugs.com/answers/starting-actemra-pmr-ra-gca-actemra-3129193.html

Mayo Clinic – Tocilizumab (Intravenous Route, Subcutaneous Route) Side Effects
https://www.mayoclinic.org/drugs-supplements/tocilizumab-intravenous-route-subcutaneous-route/side-effects/drg-20073821

I was diagnosed with PMR on 8/1/18 and have been on prednisone, then added methotrexate 6 weeks ago, and still have pain, stiffness and spasms in my lower back and hamstrings bilaterally. Rheumatologist wants to start me on Actemra/Tocilizumab, given by infusion once a month. Anyone take this drug for PMR, were there any side effects, and did it work?

Hi @jayflo,

I moved your discussion and combined it with this existing discussion, so that you can connect with members who’ve discussed Actemra/Tocilizumabon.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members.

May I ask if you’ve started the medication?

So sorry to hear this. I know the pain can be excruciating. I find a very, vry hot shower each morning with the spray directed at my lower back, hips and upper legs helps with flexibility and pain.

I was diagnosed a little over a year ago with polymyalgia rheumatica. I started out at 20 mg prednisone a day. Have been on a regimen of decreasing 1 mg a month. 3 months ago they added methotrexate. As I get down to 7 mg a day I start to get muscle aches and pain back. They have pushed me back up to 10 mg a day and started back down 1 mg a day. I am now back down to 7 and have some mild pain some days. I also have tumid lupus that I have been treating for the past 10 years seeing 5 different dermatologists ending up at Mayo with them confirming that it truly is tumid lupus. Dr.s not sure if the two are related. I am on methotrexate as a way of weaning me off the prednisone.

@billjan

I was diagnosed a little over a year ago with polymyalgia rheumatica. I started out at 20 mg prednisone a day. Have been on a regimen of decreasing 1 mg a month. 3 months ago they added methotrexate. As I get down to 7 mg a day I start to get muscle aches and pain back. They have pushed me back up to 10 mg a day and started back down 1 mg a day. I am now back down to 7 and have some mild pain some days. I also have tumid lupus that I have been treating for the past 10 years seeing 5 different dermatologists ending up at Mayo with them confirming that it truly is tumid lupus. Dr.s not sure if the two are related. I am on methotrexate as a way of weaning me off the prednisone.

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Hello, my name is Beryl……I too used to have a hot shower straight from bed …..it helps me when I could hardly move ….had PMR all over my body ……terrible…….I also found a hot pad under the bottom sheet very helpful…..try to,find,one that is not plastic they are better and don't get so hot ……get the one that switches off after an hour …..you can if you think it better get ones that stay on until you switch it off …….good luck and keep talking to us between us we have a lot of experience …….Beryl

Thanks for encouragement ! I also have osteoarthritis so I try not no always think it is PMR as I can manage osteo with Tylenol. I also think it helps to keep busy. I do quite a bit of volunteer work at the library and the nature center, also go to weekly book club. Anything to help keep my mind off my body 🙂 My daughter who lives very close to me is a big help. Most Saturdays we go art galleries etc. and have lunch/snack out. If the weather is decent I take Lily/dog to park where I can walk, slowly, along the river while she runs, plays and swims. Hope all is looking up for you

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