Newly Diagnosed PMR/GCA from Across the Pond

[PamelAnneCT]

June 20th my world changed as the body aches I'd been experiencing for years escalated to a point beyond belief, I starting running a fever and the vision in my right eye got weird. After multiple blood tests, two emergency visits and a visit with my GP which resulted in a third emergency room visit I was admitted to hospital. My CSR was over 70, c-reactive protein was 19 and the diagnosis came thru. After five days in hospital, steroids intravenously and many more tests the diagnosis was confirmed.

The relief after the first dose of steroids was unbelievable! Wow. I was sent home on 60mg a day, plus low dose aspirin and percocet for pain. Now that i've had a chance to rest and get my brain unscrambled I am so appreciative of this site. Great information, wonderful to know I'm not alone, sad that the USA doesn't have this kind of support.

In the middle of all this my GP closed his practice so I had to find a new one, which I did and she's wonderful, and trying to get an appointment with a rheum is quite a challenge.

I'm now weaning back, first day at 50, then one week at 40 then back to the GP on the 24th and finally to the rheum on 7/28.

Eesh.......

Thanks for listening!

Pam

[olive2709]

Welcome . Glad you have a good GP she will be worth her weight in gold I started the GCA journey last September down to 5mg life is getting good again . Just remember on this trip you come first

Olive

[DorsetLady PMRGCAuk volunteer]

Hi,

And as Olive says welcome.

I'm sure you will have many questions as you go along, please feel free to ask anything, no matter how trivial it may be. You can probably find most answers on here already, but it's usually best to just post. You then get the latest thinking and experiences of others. Some days will be good, others not, so if you feel down then just let us know and we'll do our best to help you through. We've all had bad days, so can empathise and sympathise when friends and family may not be able to because they don't know what you are going through. Take care.

[PMRpixie]

Hello

Yes is crazy that the U.S. doesn't seem to have a forum like this, although I don't know why. Certainly there must be many sufferers here too. I live in Oregon on the north west coast of the US. I was diagnosed with PMR January 2015. It came on suddenly as unbearable pain across my upper back and base of my neck. I had pneumonia/high fever, which I believe was the trigger that caused it. I laid awake crying through each night. And,yes, the Prednisone is a Godsend but also a curse. The weight gain is awful. My vision is touchy if I read too long and a change of glasses doesn't help because it's always changing. My eyes are getting so puffy that they are like slits. My hair is falling out and I have to take sleeping pills to sleep. Than about 4pm I could fall asleep easily. I'm down to 10/13/10/13 and is barely under control. I don't have GCA thank God. But do have bad headaches.

I wish you luck and hope you, like me, find this forum a great comfort! Take care, and many blessings !

[PamelAnneCT in reply to PMRpixie]

Hello Allison! I went out to a street fest with my son today and saw some people I hadn't seen in a while, found 3 autoimmune disorder survivors here in my little town! One of them is doing hydrotherapy at the town's pool, I think I'm gonna go even if I only stand there! I'm working with my naturopath to try and avert steroid effects, I hope it works. Three weeks in and I'm dropping weight.....being monitored. So far the lack of energy is what's hit me hardest. My brain is saying 'scoop the litterbox' and my body is saying 'NO'......

Take care!!

[Celtic PMRGCAuk volunteer]

Pam, a big welcome to the forum from me, too. Yes, we are very lucky here in the UK as we have a few PMR forums, a few PMR charities, and support groups dotted around the country. As a newly diagnosed patient, you might find it very helpful to read Kate Gilbert's book on PMR and GCA - 'a survival guide' - you will find more information on the following link, but meanwhile do post any questions you may have and it won't be long before someone answers from their own personal experience with these conditions. I hope your first reduction goes smoothly good luck!

pmrgca.co.uk/content/book

[PamelAnneCT in reply to Celtic]

Already read it, amazing book, I'll be referring to it often. My biggest issue are my emotions right now. I've dealt with depression for over a decade and now anxiety......ugh. My medical insurance stinks so I'm trying to find a therapist who's willing to work with me and my reduced income. Thank you for responding!

[Celtic PMRGCAuk volunteer]

Yes, the "emotions/anxiety" side effect can be a difficult one to understand and to handle. But, as with any other side effect, it will resolve as you reduce from the very high doses.

[Gaz227]

Sounds like one hell of an ordeal Pam , stay strong . I am newly diagnosed also hopefully with just PMR 20mg a day seems to be controlling it at the moment , Hoping to taper soon , but dreading the pains of possible flares from the taper . 😀 keep smiling

[Skrtjg]

hi. Could you tell me how high your fever went? Hope you have a fast recovery.

[PamelAnneCT in reply to Skrtjg]

102.6 was scary!

[Skrtjg in reply to PamelAnneCT]

Toms went to 104 in April of 2014 up and down for a week then end of May 2014 did same thing then in July of 2014 did same thing he was thankfully in hospital each time . I am thankful he didn't lose his eyesight. He did well until he had surgery on his back in March of 2015 . Surgery went well but he had to be taken off his methotrexate for a while and had a flare . They put him back up to 50 mg of predosone a day now down to 33 and after a month they put him back on methotrexate. I am hoping we can continue reducing.

[PamelAnneCT in reply to Skrtjg]

Best of luck!

[peanuckle]

Glad you have been diagnosed properly and are in good hands. This site is great for people like us (I'm in Canada) who don't have access to good info. I was lucky to be diagnosed by my doctor who is South African. Most docs here have never heard of PMR let alone know how to deal with it.

[rockyandzeus in reply to peanuckle]

hi Peanuckle,

Whereabouts in Canada are you?

I am in Edmonton Alberta, and haven't actually met anyone

else who has PMR.... Can't believe I am the only one!

Regards

Dorothy

[peanuckle in reply to rockyandzeus]

Hi Dorothy: I don't think you're the only one - just the only one who knows about this Forum. In my research I've found that most women (and men) who are diagnosed with PMR are of European descent - so there are a lot of us out there. I also think that since most docs in Canada don't know too much about this disease, a lot of people are misdiagnosed. The info in this Forum is amazing and you have such wonderful support. Take care.

[PMRpro Ambassador in reply to peanuckle]

There are a couple of Canadians on the 2 other forums in the UK - apologies if you are one of them!

There used to be a couple of North American forums but they sort of died...

[colmarin in reply to rockyandzeus]

Hi Dorothy.....I came across this old post of yours. I live in Edmonton and was diagnosed with PMR about a month and a half ago. I was hoping there was a support group or something like that in our area. It would be nice to connect with someone close by who has been down this road. I hope that you are feeling better now. colmarin

[PamelAnneCT]

So reduced from 60 to 50 prednisone as of yesterday and am afraid I'm feeling it. The pain in my right hip/buttock is coming back pretty strong. Hopefully I can ride it out and just do some stretching to get through it. I'm also hoping if I can get thru the pain that by reducing the steroids some of the tiredness/brain fog will lift. Going into my 4th week with this and I am having a very difficult time adjusting to my inability to really do anything. I bathe, dress and have to rest for an equal amount of time. Do a few dishes and have to rest again. Feeling blue.........

[Celtic PMRGCAuk volunteer in reply to PamelAnneCT]

Pam, as the pain has resurfaced immediately following your reduction from 60 to 50mg, it is very likely to be what we call 'steroid withdrawal pain' which could settle after a few days as the body adapts to the new dose. Generally, if pain starts returning a week or so following a reduction in dose and continues to build, it is more likely to be caused by flaring inflammation.

As you are someone who had raised inflammatory markers at diagnosis, then the blood tests should have been repeated before the reduction, and used as a guide together with your symptoms, as to whether the inflammation was sufficiently under control for the reduction to take place.

[PamelAnneCT in reply to Celtic]

CSR was down to 35 on Jun.30 from 72 on Jun.25

More bloodwork this week.

Thank you! So overwhelmed today.

[peanuckle in reply to PamelAnneCT]

Hang in there PamelAnne. It does get better.