PMRGCAuk
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So Thankful I found this group!!

So Thankful I found this group!!

Hi my name is Sherri and I live in the United States, specifically California and even more specifically in the town where we have recently had horrendous wildfires. So stress has definitely been part of my life lately. I was diagnosed with PMR in September and similar to all the posts I've read, within 3 days of starting on prednisone my pain was miraculously gone!!! I have yet to see a rheumotologist, I was diagnosed by a "medical mystery dr." I was given a 10 day plan starting with 60 mg a day for 3 days and down to 10 mg at the end of the 10 day period. I am now on 15 mg a day - have tried twice to go down to 12.5 - but pain returned. Sorry this is so long, I wanted to introduce myself and join in, I've been a "lurker" for too long!!!

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Welcome SherriSews 🤗 sorry you had to join this group but it is amazing. The support and knowledge here is second to none. I’d be lost without it. Xxx

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Hi Sherri,

Welcome..., that’s a strange regime for PMR - 60mg is mid range starting dose for GCA patients, 15mg -25mg more usual for PMR. No wonder all pain was gone within 3 days. But I don’t think the tapering regime will have done your body or the illness a lot of good.

Have you been down to 10mg and then back up to 15mg?

How long have you been on 15mg? and are you pain free on that?

If you have been on 15mg for at least a month, and are painfree then it may be wise to reduce by only 1mg rather than 2.5mg. That is nearer the recommendation of not reducing more than 10% of your existing dose. Many people find the drop from 15mg to 12.5mg too much.

If you haven’t read post below it might give a better idea of how to deal with your illness

healthunlocked.com/pmrgcauk...

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Thank you all for the warm welcome, and in particular to DorsetLady for this really helpful article. I feel as though I've been floating through space untethered and really need to speak to a specialist. This last weekend my blood counts spiked really high although they are back to my usual numbers the last couple of days (I am diabetic) and my vision has become blurred. I've contacted my drs. and neither has called or written back. In my health group I need referrals to go to different drs. and they are not responding at this point. The information that all of you have shared has helped quite a bit and hopefully I will get into see someone soon.

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Welcome! I'm originally from Calif myself. As noted above, this is the wrong treatment regime for PMR; so I'd consider it very urgent that you see a rheumatologist or that your GP review the US rheumatologist's consensus statement on treatment approaches. Really you should have been started on around 15 mg and no fast reductions... indeed really best if they leave you on 15 mg and try to get you to a rheumatologist for a proper treatment approach. :)

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PS I think the very fast reduction from a needlessly high initial dose may be causing difficulties -- you'd generally be at 15mg for a few weeks at least depending on the reduction approach.

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Hi and welcome Sherri! Glad you decided to post. The first thing that strikes me about your story is the huge drop from your initial extremely high dose of 60 mgs ( for PMR not GCA) to the relatively low dose of 10 mgs. Did your " medical mystery doctor" discuss the thinking behind this dosage pattern?

Most of us start on a dose of under 30 mgs to 15 mgs. I was started at 20 mgs and stayed there for a couple of months then began the very gradual tapering over the next 18 months to where I am now between 6 mgs and 7 mgs and definitely around my minimum dose for comfort. A few side effects and pauses along the way. If I were you I would be inclined to rest at 15 mgs for a while until the inflammation really settles. Then look at tapering patterns on here.

I hope you didn't suffer any personal losses during the wild fires. It must have been so stressful for everyone.

My daughter used to live in the Blue Mountains in Australia, she had a wooded area at the end of her big garden. Those trees were blackened where previous bush fires had reached. I found it so frightening. The gum of course adds fuel to the fire.

Anyway, I hope you stick with us!

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Welcome SherriSews. I'm not far from you south of SF, Menlo Park.

I couldn't do the 15-12.5 taper. Had to slow it down to 1mg a time.

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Greetings and Welcome, Sherri :-)

Thanks for your introductory Post - it's nice to know that you have 'de-lurked' / come out of the shadows here! And... to hear from another PMRGCA 'Newbie' from across the Pond too ;-)

Yes, your brief story sounds typical of the PMR Journey. Many of Us Lot report a period of Stress as being a possible contributory factor in PMR - although it is of course a complex matter to reliably determine Cause and Effect with these types of AI illnesses.

I can only imagine the devastation in CA - you seem to get some very wild and dramatic climate conditions there? It makes the sometimes blustery weather in south west England seem very tranquil by comparison...!

Just to say, you are in very safe and expert / trusted company here - I have learned this on my 2 1/2 year journey with this illness which some Family Doctors aren't very well-informed about.

Please keep us all informed about your progress. And don't forget to try to keep smiling on the PMR Journey...

Best wishes from the UK

'Uncle' MB :-)

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Lin-calif is also in California and had to move out of her house because of the fires - so I imagine you can't be far away. She is home now.

healthunlocked.com/user/lin...

That is a bizarre approach - you can't use Medrol packs for PMR!!!! This is a more normal sort of idea:

rcpe.ac.uk/sites/default/fi...

It is easy enough to read and is aimed at GPs to help them manage PMR and GCA.

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Welcome Sherri.

Well done for de-lurking. It’s guaranteed to make you feel better 😉

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Can’t imagine your anxiety! Did you have damage? I certainly hope not. The hardest thing about PMR is reducing the taper to keep symptoms at bay. Pacing is another tough one since we suffer from an autoimmune disorder. Give yourself the luxury of going slowly. Call the Drs. daily until you get an appointment, make sure you thoroughly research the Doc’s reputation and post away!

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Welcome Sherri! This forum will give you the best info and guidance for this rocky road journey.

I live in Sonoma,CA, so understand your stress with the wildfires. We evacuated for 2 weeks to our son’s home. The smoke was so bad, and my husband had a severe respiratory infection. Many people are feeling various feelings of PTSD after the fires.My body is screaming with all kinds of physical and emotional symptoms.

Take care. Hope you are better soon. Pace yourself.

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Welcome. My advice don't reduce quickly or things will go pear shaped. Good luck.

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Welcome Sherri, I sure hope you weren't affected by the fires. I live in Santa Rosa and voluntarily evacuated when I saw flames on the hill near us.

I mostly left due to the smoke.

This is the most wonderful site everyone is so nice and helpful and you will get tons of support and help.

God bless

Linda

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Hi Sherri,

I am glad that you survived that horrific disaster. We live about 85 miles southeast of you, in the San Joaquin Valley. I certainly understand your stress levels. Just 6 weeks before the fires my wife and I had spent a few days vacationing in Napa-Sonoma. So sad.

My wife started on 15mg, but her rheumy had her taper gradually down to almost nothing within 7 months, even though her symptoms were coming back the lower the dosage got. He was insistent, to the point he said he and the pred had done their job because the inflammation no longer showed up on the blood tests. My wife went back to her GP who was more interested in giving her some quality of life, and put her on 10mg. She has recently had to get up to 12.5mg to be able to exercise to try to lose some weight (she is also diabetic). She will be seeing another rheumy this week.

Joe

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Hi Joe,

Your wife’s Rheumy was partially correct in saying that the Pred had done it’s job because her inflammation markers were okay. But what they don’t seem to grasp is, and I’m not sure why, that so long as the PMR is active the the rogue cells that cause the inflammation are still produced on a daily basis. They seem to think once the Pred has controlled the inflammation that’s the job done!

It’s not, as I explained the other day all the Pred is doing is controlling the inflammation caused by the underlying PMR- and that's a serious illness. Pred is only like a plaster over a broken bone or a sticking plaster on a cut. It stops the original injury from getting any worse, but it doesn't actually mend it.

Time mends, along with a little (or a lot)of TLC, patience, pacing and rest! And the correct amount of Pred.

Hope her new Rheumy is a bit more switched on!

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To add to DL's post - it would be like a rheumy telling their RA patient that there was no sign of their RA so they should stop taking their medication. What would happen? The symptoms of the RA would return and the joint damage would continue...

Where they get these ideas from beats me!!!!!

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Or like a schizophrenic being told you seem fine now, I’m stopping your prescription.

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Even better...

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I do not have PMR but CNS Vasculitis. I was told it was a rare disease, but once I was feeling well enough, but still in the National Hospital for neurology and neuropathy I used to run question and answer sessions with post graduate doctors.my consultant supplied all the medical details and I told them about my symptoms. I like to think I helped future consultants recognise the various problems.

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Welcome. What were your symptoms?

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Well, I don't know exactly when it would be considered "it" started. Two years ago I had absolutely terrible pain on my left side of my ribs that went straight through to my back. Really, unbearable pain!! "They" took xrays, blood tests, all sorts of other tests. They finally came up with I had a dislocated floating rib, I had physical therapy and the pain eventually lessened a little. Case closed, you're well, go on your way! But the pain never really went away and for a year I had basically sat in a position that wouldn't cause too much pain and took percoset. In addition to this I couldn't raise my arms and as the 2nd year started I started to walk bent over and it felt like my upper body was sinking into my hips. Another Dr. sends my to physical therapy where basically I did exercises at home with my husband as my "trainer". Again, after 3 months I was "cured". Finally back to my family physician he sent me to the "medical mystery dr." and she proclaimed she thought I had PMR. She prescribed a 10 day schedule of prednisone and there I was out on my own. It's been 2 1/2 months and our only communication has been through email. I am finally seeing a rheumotologist (?) this coming Wednesday and I hope to get more information and feel like someone is looking out for me. I did buy the book and it has been very helpful but this group has been a God send for me. Sorry this is so long but you asked!!

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