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Esteemed Contributor
Posts: 7,754
Registered: ‎05-08-2010

ANYONE SUFFER FROM POLYMYALGIA RHEUMATICA? HOW ABOUT TEMPORAL ARTERITIS?

DH has not felt well for close to 3 weeks now.  He has headaches, all over muscle aches, weakness, and fatigue.  He says he feels the way he felt when he had cancer.  He tested negative for Covid, twice.  He had a phone consult with his doc this afternoon and was sent to the lab for several blood tests.  The results will be back Monday.  He had a physical in February so this came on pretty fast.

 

The doctor suspects PMR along with TA.  Treatment is long term prednisone.  

 

Anyone here ever go through this or is going through this?  It is an autoimmune disease.  

 

TIA

Fear not Brothers and Sisters! I have read THE BOOK..........we win!!!
Esteemed Contributor
Posts: 5,897
Registered: ‎05-27-2015

Re: ANYONE SUFFER FROM POLYMYALGIA RHEUMATICA? HOW ABOUT TEMPORAL ARTERITIS?

[ Edited ]

@tends2dogs  I woke up one day about 7 years ago and couldn't move. I struggled to get out of bed and was so stiff I couldn't towel off my feet or pick up the towel. It was shocking! the stiffness settled in my shoulders, hips and knees. After a few days, I consulted my doctor, and he put me in touch with a very good rheumatologist  He diagnosed me right away with PMR. Never heard of it before. I didn't have any other symptoms, but my bloodwork showed my "seds" (sediments?) were sky high. Which meant inflammation. He suggested all sorts of biologics, but I didn't want to take those meds. I could deal with the pain with Advil. For special occasions, I took Prednisone. When on the steroids, I felt SO good! I only took them for weddings and vacation. After about 3 or 4 years, it went away for the most part. Now, I just have general stiffness, but nothing that is immobilizing like before.

Just to let you know, I did NOT have fatigue or headaches.

Respected Contributor
Posts: 2,206
Registered: ‎09-18-2010

Re: ANYONE SUFFER FROM POLYMYALGIA RHEUMATICA? HOW ABOUT TEMPORAL ARTERITIS?

Sometimes, not always, the symtoms can be disguosed as MS.  Prayers that the tests come back with good news.  Do you live in New York?  Hospital for Special Surgery has one of the best Arthritis Centers:  https://www.hss.edu/inflammatory-arthritis-center.asp

Valued Contributor
Posts: 555
Registered: ‎02-04-2011

Re: ANYONE SUFFER FROM POLYMYALGIA RHEUMATICA? HOW ABOUT TEMPORAL ARTERITIS?

[ Edited ]

It's difficult to diagnose.  I went about a year and through various doctors.  A rheumatologist here refused to even see me as her practice was full of "more serious" patients.  Finally, I found a good internist who also diagnosed me right away.  I have been undergoing prednisone and methotrexate treatment for many months now.  It's been a long road.  I never had headaches, but my long muscles in the legs, arms, and lower back were painful and, before I got diagnosed, I thought I was headed for asissted living.  I am feeling somewhat better now, but I will proabably have to undergo treatment for another 8 months to a year.

Frequent Contributor
Posts: 78
Registered: ‎03-11-2010

Re: ANYONE SUFFER FROM POLYMYALGIA RHEUMATICA? HOW ABOUT TEMPORAL ARTERITIS?

Yes, I was diagnosed with this disease in my early 70's. It started with my legs being sore.  I had messages and saw a chiroractor just to relief the pain.  I hurt just to get up from a setting position.  I couldn't even turn over in my bed.  The morning I saw my rheumatologist, my husband had to help me get out of bed. I had all kinds of tests and finally a rheumatologist.  Started with high dosage of prednisone. The following morning, after I took my pill the previous evening I had no pain.  I felt marvelous. I am now 77 and still see my doctor every two or three months.  I haven't had any complication for several years.  

Valued Contributor
Posts: 555
Registered: ‎02-04-2011

Re: ANYONE SUFFER FROM POLYMYALGIA RHEUMATICA? HOW ABOUT TEMPORAL ARTERITIS?

[ Edited ]

I didn't have temporal arteritis(sp), but I imagine headaches may lead to that diagnosis, too, as they go hand and hand.

 

For polymyalgia rheumatica--there can be various theories but, it is thought that somehow in people over 65 years of age, some where the person had a virus of some sort that triggers or tricks the immune system to attack the long muscles of the body.  Prednisone is given because it calms the immune system so it doesn't continue to attack the muscles.  That's why a person needs to be on prednisone for months so the muscles aren't continually attacked by one's own body.  Advil won't help that process but it will help the pain some.  So far, whenever my docotor tries to taper me off of prednisone, the long muscles are painful again and that's a bad sign, so she puts me back to a dose where the muscle pain is relieved.  For people who choose not to take prednisone (or something like it), muscle wasting can happen and that is not reversible. So, even though the prednisone has some side effects, if they prescrible it for your DH, please consider taking it exactly as prescribed every day.

Esteemed Contributor
Posts: 7,754
Registered: ‎05-08-2010

Re: ANYONE SUFFER FROM POLYMYALGIA RHEUMATICA? HOW ABOUT TEMPORAL ARTERITIS?

Thanks to everyone that shared their experience.  I read a bit online about this and while it isn't fatal, it is miserable to have.  I spoke with the doctor and asked about the treatment.  My DH has taken prednisone in the past for poison ivy, short term.  It really messed him up.......confusion big time.  The doctor said that the idea is to get the symptoms under control, but if he can't tolerate it, there are other things that could be used.  20 mgs would be the initial dose.  

 

Yes, he is checking the SED rate.  While it isn't specific, it will show inflammation.  Again, thank you for sharing.  I may have to come back and ask questions again as we learn his diagnosis and procede with a treatment plan.

Fear not Brothers and Sisters! I have read THE BOOK..........we win!!!
Respected Contributor
Posts: 2,052
Registered: ‎08-25-2010

Re: ANYONE SUFFER FROM POLYMYALGIA RHEUMATICA? HOW ABOUT TEMPORAL ARTERITIS?

[ Edited ]

@tends2dogs DH was diagnosed with PMR about 10 months ago and it was debilitating at first. He had severe neck, shoulder and hip pain, especially in the morning. He remembered that his mother had it when she was in her 60's, so he researched it online. There are 2 blood tests that are excellent tools in diagnosing PMR: C Reactive Protein (CRP) test and Erythrocyte Sedimentation Rate (E Sed Rate) test. These tests aren't part of a regular blood test regimen. DH was going for his annual physical and asked the techs to add them to his tests. When the results came back, his doctor called and asked him why they ran those 2 tests. He said DH had self-diagnosed correctly and that they'd probably never have run those 2 tests if he hadn't called and asked for it. His markers were so high, his doctor said it was a wonder he could get out of bed in the morning.

He was put on Prednisone and started seeing improvements shortly thereafter. Although his doctor had plenty of experience working with PMR patients, he suggested DH see a Rheumatologist, mainly to see if there were alternatives to Prednisone. The Rheumatologists in our area were booked solid for months, so he wound up going to the one who could see him the soonest. This guy was useless. He tried to wean DH off the Prednisone way too fast, with the result being that he was in excruciating pain again. He dropped the Rheumatologist and has been working successfully with his PCP to get weaned off it.

 

Early on, he developed diabetes as a side effect of the Prednisone. He takes a small shot of insulin once a day (they look like epi pens) and that's worked out well. Over the course of the past 10 months, he's gotten his Prednisone dosage down significantly. He's still a little achey when he first gets up, but he's SO MUCH BETTER than he was before being diagnosed. Tell your husband not to get disheartened - he and his doctor just have to work their way through it. Tell him not to let slow progress or minor setbacks get him down. There's hope at the end of the tunnel. Good luck!

 

ETA: @tends2dogs  DH reminded me that Prednisone can reduce bone density, so he also takes a pill once a week to build up his bone density.

Valued Contributor
Posts: 555
Registered: ‎02-04-2011

Re: ANYONE SUFFER FROM POLYMYALGIA RHEUMATICA? HOW ABOUT TEMPORAL ARTERITIS?

[ Edited ]

What really complicated my polymyalgia rheumatica diagnosis was that the C reactive protein and sed rate never went up.  Luckily, the internist I go to had treated PMR people without significant C reactive protein or sed rate elevation before.  Her mentor is an expert in the field who has written many articles about how to carefully diagnose and treat PMR patients like me without elevation of the blood tests.  She consulted with this expert and, together with his articles, my internist ordered various blood tests and an EMG before confirming the diagnosis.  I am so grateful she didn't give up on me or think my pain was "all in my head." If she had, I can imagine that I would not be able to move today and would probably have had to go to assisted living or a nursing home.

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Posts: 5,501
Registered: ‎07-03-2012

Re: ANYONE SUFFER FROM POLYMYALGIA RHEUMATICA? HOW ABOUT TEMPORAL ARTERITIS?

I am so sorry to hear about your DH.  Almost 19 years ago, I started to have numbness in my hands.  Thought it was carpal tunnel.  Went to a chiropractor recommended by our ds.  Within 3 weeks, i couldn't walk.  Our ds is a Dr. & told me that he thought I had Guillien Barre Syndrome.  He said go to a neurologist asap.  Same diagnosis and within a three months, I was completely bed bound.  Took 60 mg dosage of prednisone and could move my legs within an hour.  Went back to the neurologist and he diagnosed me with CIDP (Chronic inflammatory Demilinating Syndrome) an offshoot of MS.  I went to the Mayo Clinic for two weeks and had plasma pheresis.  After lots of PT & OT, I was slowly able to walk & have a normal life.  I have a port and get IVIG Infusions every 8 weeks. They are such a blessing for me.  I thank God every day that I can get out of bed and walk.  I also became diabetic because of the prednisone which I was on for about two years.  Good luck to both of you.