Oh nooooo......not again !

BJJB - 

I have found it's not quite as simple as that. 

I have been dealing with PMR for 2 years now.

Each situation is different so one set of instructions as to what to do does not necessarily apply to all set-backs.

At this time I feel I may have a better handle on what might work best for me.

I also find that the knowledgeable folks on this forum who have personally experienced these things in the past are a great source for suggestions.

My rheumy also respects my opinion so if I call it is often a collaborative decision for the particular situation at hand and past recommendations may not be applicable.

I wish it was as simple as "if so and so happens then do this".

Unfortunately, I have found it doesn't work that way since this disease process is not static and any decision must be based on the dynamic nature of what is happening at the time.

I understand your point.... I suppose I'm more comfortable, when it comes to adjusting medications, when I check with my physician first. My first go around with PMR I was lucky in that I had no issues when I began to reduce the prednisone. 

I'm not criticizing looking for help on the forum, (or I wouldn't be here) but knowing myself I would gather the suggestions and then talk to my doctor about it. 

I guess I'm a bit of a chicken..

For many of us it is a case of not being ABLE to sit down and discuss it with a medic - sometimes you have to wait 2 weeks or more for a routine GP appointment and then they have 10 mins. And many doctors don't have a clue, they are used to using pred for a short sharp course in asthma or pneumonia for example and that is a very different thing. It is no use following a fixed plan that doesn't work and allows a flare in and then you are back to the place you started months before, often unnecessarily.

Experience counts for a lot - and slowly more doctors are becoming educated about how it is a very different kettle of fish. The other problems tends to be they have often been told that PMR lasts less than 2 years - instead of the real duration which is a median period of 5.9 years. Reducing in 2 years and expecting it may possibly take 6 years are a rather different thing.

I agree with EileenH, the forum has been a great learning experience for me, I have learned far more here and shared articles with both of my doctors. Each person is different and will have a different experience on this journey, you can share your experience and it might help someone else, others experiences have helped me on my journey. I try hard to stay positive and keep a smile on my face. And believe strongly that it helps. ☺️

Look Eileen I was referring to myself, I wasn't saying self-adjusting was wrong. I'm just not comfortable doing it that way. I meant no offense.

It seems our medical system is a bit easier to deal with, as I usually can get in to see my physician within 48 hours, sometimes even on the same day. 

As I said I was, it seems, extremely lucky, I had no relapses during the reduction phase

Again, I am not criticizing  anyone's approach to dealing with PMR.  Obviously I came to this forum to find out what others have experienced and how they cope. My reason for asking the question I asked was because the way my doctor worked with me and the way I responded to the treatment I had no reason to seek alternatives. 

If I have offended anyone I apologize, my comment was about my way of dealing with this...not someone else's.

All good....I don't think anyone was offended and I am glad that you have a system in place that works for you. 

Bjeanjellybean, I am not offend, I have a doctor who believes in rushing off Pred, I had a very bad flare, ended up in a wheelchair could not walk. When first diagnosed need 20 mg, after the flare need 30mg for 6 weeks to feel normal, not counting the Pred side effects. I don't know what I would have done without the forum.

You are one of the lucky ones, good for you. I consider myself very lucky to have found the forum and the help I have received. ??

Thank you Scott.  I will soon learn if the system will be as good this time around as it was for my first bout with PMR. 

Yes, I agree, the forum is a very helpful thing.  I have just  begun what is my 2nd bout with PMR. It's been 7 years since I ended my treatment for the first bout. I have learned a lot about the disease and the different severities that people have. I appreciate the articles people have directed me to and their personal stories. 

Yes, I was lucky my first time around with PMR..... I guess I'll see how lucky I am this time around. 

I sincerely hope you are able to overcome the setbacks you are experiencing. 

Bjeanjellybean, I am doing great, don't know how many days I skied this year, was on the skis for 8 days straight, then 10 straight teaching, taught at two different areas this year. Several times I went skiing on my days off. Tomorrow I am joining a group of friends to go on a bicycle ride for the first time in 2 years. I thank EileenH and the rest forum for the help and guidance when I was down. Think positive with a smile on my face! ??

Don't forget to wear a helmet!  Last time I tried to ride a bike I got on and rode directly into a ditch!  LOL!

You're absolutely right ..... a positive attitude is so very important. I too try to keep a positive mindset.  It's a bit tough at the moment because I haven't started treatment yet, and sometimes the pain and fatigue wear me down.  But I have a wonderful husband who keeps me buoyed up....makes it much easier.

 

BJEANJELLYBEAN, I always wear a helmet, MIPS helmets one for bicycle riding, one for skiing. Before PMR normal rode 3,000-4000 miles a year. Tomorrow first time in couple of years. ☺️

Wow!  I'm a walker ..... although haven't done a lot of that for a while. We moved back to Michigan 6 years ago, in part to help my father take care of his home. Although he drove up until a year before he passed (at age 93!) I was his companion for Drs appt etc.... didn't get a lot of time to myself.  He passed away last June, and between dealing with his estate etc... and now the flare of the PMR...well..........

I have ridden my bike short distances maybe 5 miles....nothing that would add up to your mileage!  Hopefully you'll be building up to that distance again soon.

I assumed you were - I was replying generally as I always do. I doubt anyone here was offended - but we almost always reply assuming others are on the same sort of wavelength as we are and are interested in how other systems/patients/doctors do it. So we tell you things the way it is...

 

Everyone I know who has had PMR twice has said the two bouts were totally different - so it will be interesting to see how you get one! So do keep us updated.

Well first bicycle ride in almost 2 years. Did not fall, 13.3 miles up and down the hills of NM. Stopped midway for a coffee and chat. Had not seen some of the people in almost a year. Good to see the old gang again. Slow ride 10.9 mph. Yes, the US still has not gone metric, wish the Donald could correct that, that would be an Improvement! Think positive with a smile.☺️

Well, so far this event is completely different than the last time. In fact I believe I've began this flare at least a month or more ago. Because the pain areas are not the same, I am lacking the anemia and low grade fever, I really didn't even relate the symptoms to PMR. It wasn't until my labs came back and show the inflammation that I realized that it was most probably PMR. 

I go to the doctors tomorrow, so I will see what's to be done. I will definitely let you know how it goes. Fingers crossed, I will be lucky again this time and respond well to treatment without any set backs, ..... we shall see.

Bravo! Sounds like you had a stellar outing. We've been stuck in the house pretty much all winter. Lots of snow in Michigan this year. I am aching (no pun intended) to get outside and start our flower garden and get back to walking. It's been cold and rainy for the last few days.  I'm even considering "Mall walking", as much as I used to groan about doing it with my dad (he did it 2x a day!). Just makes me feel so old, at 66 I was the youngster of his group of guys that walked at the mall, LOL!

Just raised blood markers doesn't mean it is definitely PMR. The diagnosis is made in combination with the typical signs and symptoms. That said, I was never anaemic, I don't think I ever had fever and I never had markers outside the "normal range" though they were raised for me, but otherwise I fulfilled most other criteria and responded in less than 6 hours to 15mg pred. 

Something like 20% of patients who have a diagnosis of PMR originally have it revised at some point later, often to an inflammatory arthritis which will also lead to increased ESR/CRP but present with slightly different symptoms.

Sorry, but I have to be picky: pred isn't a TREATMENT for PMR, it is the means of MANAGEMENT of symptoms. It has no effect on the underlying CAUSE of the illness at all. 

Doesn't change the distance!!! And how are you today?

Similar situation for me.

Never anemic, no fever, no weight loss, only slightly elevated ESR.

Presenting symptoms were classic and responded in 24 hours to 15mg.

I do have the hip and shoulder pain markers (which I didn't have before). One reason they had a difficult deciding what I had the first time around was because I didn't have the typical pain associated with PMR.  The doctor ruled out Lupus, Lymes, and Rheumatoid Arthritis, so who knows. I guess, as I said before, I'd just rather it be the devil I know than the devil I don't.

You're right, I know prednisone isn't really for the symptoms, I use it as in  "treatment of the symptom". 

At any rate I have an appt this afternoon with the doctor, so I'll find out then where we go from here

It's such a weird disease, so many people seem to have atypical symptoms.  The last time around the only thing I didn't have was the pain markers in the places they say they should be, that is until my jaw starting to hurt. That's when they finally settled on PMR.

BJEANJELLYBEAN, I am a 80 year young Rhode Islander, move to the Southwest 8 years ago, we have the 4 seasons here in the high desert of NM. I wish I had moved here 30 years ago, absolutely love it here. Do not miss that cold damp NE weather one bit. Far more active here than when I was retired in NE. I so active here I don't miss the ocean or my boats. Just one good day after another.

Think positive with a smile on my face. ??

Hi EileenH, doing great helping my wife do some house work. I just have to stay active, keep moving. This evening I get together with some ski Instructors working on improving our movement analysis. Learning something new all the time. Smiling ☺️

And how were you a year ago Mich????????

EileenH, after the season ended last year I had just learned of the forum had a bad flare, ended up in a wheelchair and very discouraged, you and a couple more people kicked me in the backside, got me moving and I have not looked back. I thank you everyday, I had several bad months but it has been all positive once I got going. Thanks again EileenH! ☺️☺️☺️

Went to the Drs for a follow up today and he doesn't think I'm having PMR flair, although he's having my ESR retested in 2 weeks. He doesn't think my SED rate is high enough and I was surprised to discover he doesn't believe that CRP has any connection when diagnosing PMR, he sees it as an indication of my risk for heart trouble.  He has given me another script for Meloxicam to help with the pain and I guess, to help with the inflammation. 

I'm going to do some research on diets that help reduce inflammation, and perhaps some other natural remedies.

So............ 

 

See - told you so!!!!!

Strange how some people like to rewrite the evidence to suit their concept isn't it!

The CRP for heart and PMR are different. The high sensitivity one is only any indication of cardiac problems in patients with a normal level and then you measure it with another technique and it is a tiny elevation. If the ordinary CRP is raised - it swamps the other. 

https://labtestsonline.org/tests/high-sensitivity-c-reactive-protein-hs-crp

Up to 20% of patients with PMR have ESR that is in normal range - though often it may be elevated for them despite being within the range for the entire population.

Does the meloxicam help at all?

☺️

I really don't understand the whole thing.  You said "is only any indication of cardiac problems in patients with a normal level "  Both my CRP and the Hi-Sens CRP were abnormal..... as was my sed rate.

The meloxicam does help with the pain as long as I take it everyday.

 

Then that is different - you didn't say the high sensitivity level was also raised. But to be honest - from what I have read in the past it is less significant than it would be in someone with a normal CRP. PMR is a vasculitis, I would have thought it is likely to raise the Hs-CRP.

But if meloxicam helps with your pain - that suggests it may not be PMR which rarely, if ever, responds to normal painkillers. The literature occasionally suggested using NSAIDs for PMR but it is generally acknowledged it does little and the most recent guidelines say it is not recommended as the potential side effects are considerable.

I do hope someone comes up with an answer for you though. Has anyone suggested a spondyloarthropathy?

The meloxicam takes the edge off the pain, doesn't take it away completely. 

I am scheduled for another sed rate and CRP test next week. If the levels are higher than the last labs perhaps the doctor will reevaluate his opinion.

No one has mentioned spondyloarthropathy.... but looking at the type of things that fall under that I don't think my symptoms fit.  Perhaps Undifferentiated Spondyloarthritis could be a possibility.  I'll mention it to my doctor at my appointment next week.

Maybe it isn't PMR this go around, but I sure wish we could find out what it is. 

PMR and some early spondyloarthropathies can appear almost identical. It isn't uncommon for anklylosing spondyloarthropathy to be misdiagnosed as PMR - only coming up with the more specific finding later. One friend was told PMR - and later that she had probably had GCA but it was too late to give high dose pred. A throw-away comment about the night pain she had prodded her wonder-rheumy's suspicions and she was sent for tests. Which identified that, yes, it was AS. Being on an anti-TNF drug has turned her life around.