PMRGCAuk
6,907 members10,889 posts

Think I had paydirt on this article!

Think I had paydirt on this article!

You know how it is just one more article just one more article need to get in the shower and do my hair but I can't do that until I share this article with all of you.

Everything about Prednisone, Methotrexate, reduction time limits, Labs versus symptoms, etc. are addressed in this article written in November 2017 by Medscape. I'm excited I have ammunition for my doctor's visit tomorrow. :-)

Enjoys~ Janet

My new friend, Beth, and I at the Easter Parade yesterday afternoon. An old Richmond tradition. I told her we would wear our spring front door wreaths on our head as are bonnets~ she thought I was kidding, kid I do not :-) then about half an hour into the festivities we were stopped by a photographer for a local magazine because "you guys look great" he said. ;) I thought Beth was going to melt into the street! LOL

emedicine.medscape.com/arti...

37 Replies
oldestnewest

You guys do look great. Hope you had a madly fun day!

3 likes
Reply

We did thank you. :-)

Reply

Awe... it looks like you had a FAB day! Thanks for the article!!!!

1 like
Reply

We did. And you're very welcome. :-)

1 like
Reply

Love the picture! Thanks for posting the article. Scariest stat was 50% relapse after stopping steroids. Maybe we should all stay on low dose forever!

2 likes
Reply

Thank you. I already knew about the 50% but the rest of it supports what everyone here says not as much as what my doctor believes. Hoping for the best today. Prepared for Less.

2 likes
Reply

Love it - not Richmond, Yorkshire I assume!!!!!!

They have just updated the Medscape article so it is even better than it was though it was always good. I note though they say "3 studies" and then only talk of 2! However, the Salvarini one had a follow-up paper at 5 years

ncbi.nlm.nih.gov/pubmed/185...

which concluded "MTX-treated patients showed slightly less residual inflammation than controls, with the same incidence of steroid-related side effects. PMR is not a benign condition, as often reported, since one third of patients need steroid treatment for more than 6 years."

If the purpose of mtx is to avoid steroid-related side effects, it doesn't make much difference for adding that extra layer of mtx side-effects and limitations. And was the first mention of what was found in the work Eric Matteson has published recently:

practicalpainmanagement.com...

3 likes
Reply

Oh this is wonderful, an update on the article! And yes you are correct it is Richmond Virginia and the US. It was a gorgeous afternoon though I'm still dealing with my allergies. The tree pollen count had tripled since the previous day and I'm really feeling it. And yes I have a full allergy regimen going. I will check out both these articles before I go today

My understanding from when I saw my doctor in February his comment was well you can't stay on Prednisone forever... At this point it had only been about 3 months which is hardly forever. Particularly given the article July 2017 that changed the findings of how prednisone effects long term that's been shared here over and over. His other comment was that the methotrexate what help me get off faster. So that's what I'm facing and his mind. Why is it many of us feel like we are in battle against our doctor's? Thank you for the update.

1 like
Reply

"well you can't stay on Prednisone forever" - why not? Some people do for other disorders. Some 5% of patients with PMR DO have to remain on pred for the rest of their lives - possibly due to the PMR but more likely due to inadequate adrenal function. The hope is you get to 8mg or lower - and then it makes next to no difference because it is the same or less than the amount of corticosteroid your body makes naturally anyway.

Side effects are the result of EXCESS corticosteroid. So if you get to 8mg or so - of course there won't be much in the way of long term side effects. Except in his mind.

2 likes
Reply

Just a thank you for this comment which I'm sure has been made before but having brain muddle (which I, of course put down to PMR and definitely NOT age!) I have wondered if there is a point at which I really don't have to worry about taking pred. Started on these last May and have now, following this website's advice, reduced to 4mg per day. I'm SO proud of myself but it hasn't been easy, especially the last reductions from 6mg to 5mg and now 4mg. I am now going to relax and appreciate that it really doesn't matter if I stay on the 4mg for an indefinite time. The bad news, of course, is that I now have to come to terms with the fact that the weight gain is probably down to greed and not the steroids. Curses!!

1 like
Reply

I'd certainly not be worrying about taking pred at that level!!! Really, once you are down to 5mg you are definitely in the physiological dose range - no added extra.

medpagetoday.com/rheumatolo...

found that at PMR doses there really aren't any effects that wouldn't be found in an age-matched population not on steroids. The author is a PMR expert - concerned about doctors and patients trying to rush off pred because of perceived problems that are being blamed on pred. Which ain't necessarily so...

1 like
Reply

thanks I like your statement about getting to 8 milligrams and then not worrying

Reply

Hi,

What a pity they still state 50-75% of patients will be off steroid within 1-2years.

Plus their maths isn’t very good either if they recommend 1mg every month reduction over 10mg, then 1mg every 2 months under 10mg. if that’s the case then 50-75% of patient’s will be starting at 14mg and completing the reduction within 24 months with no glitches!

4 likes
Reply

“What a pity they still state 50-75% of patients will be off steroid within 1-2years.” My thoughts exactly.

Maths versus real life!

4 likes
Reply

I guess med school didn't focus on math?

3 likes
Reply

Yeah don't know why Med school must not have focused on math classes? I especially love the no glitches LOL well I'm already well beyond the glitch part. ;)

1 like
Reply

This is still my doctor's stance "most off by one year" I'm out of the ordinary of ~course.

Reply

Give him the links

practicalpainmanagement.com...

rheumnow.com/video/dr-kathr...

and point out they come from the ACR meeting and are a retrospective study - not hearsay...

1 like
Reply

Hate to say it Janet but ....”Oh you do look well!”

I shall now return to hiding under my boulder, but you look lovely :)

4 likes
Reply

Good morning thank you I hope you're out from underneath your covers. Oh don't you hate but you look fine or you look well or but you don't look sick?

1 like
Reply

Yes I’m out :) been to play bowls. Lost abysmally, but the score is not important.

1 like
Reply

Thank you for the link, pity they failed maths! Lovely picture you both look fantastic. 😁 That’s me behind the sofa hiding from the slap! Sorry 🤭

3 likes
Reply

It's okay come out from behind the sofa :-) I just said above don't you hate it when you hear uh oh you look great or oh you don't look sick... PMR like others I have is an invisible illness. I think those are the hardest kind for other people to get a grasp on. I hope you have a great day.

2 likes
Reply

I got as far as 'reduction of the erythrocyte sedimentation rate (ESR) to normal'

and thought..................I know people whose ESR and CRP are never ever raised.

I continued reading and thought..................not bad, but quite a few things not quite correct.

Is Medscape a USA site|?

2 likes
Reply

Good morning. Yes here's a link to give you more information about the website. It would be considered well-known and respected here.

en.m.wikipedia.org/wiki/Med...

Reply

I went to your link, but I couldn’t quite figure out who “funds” the site.

1 like
Reply

I just pulled off these two articles that will tell you everything you've ever wanted to know from A to Z I haven't had time to read it as I'm getting ready for my appointment. It's considered to be a peer-reviewed medical journal.

ncbi.nlm.nih.gov/pmc/articl...

medscape.com/viewpublicatio...

Reply

It's one I quote from quite a lot. This new updated page, based a LOT on the 2015 Guidelines is better but I doubt we will ever get them totally round to our way of thinking.

2 likes
Reply

Is this new? No one commented on it...

”tocilizumab, an interleukin-6 receptor antagonist, suggest that this agent is effective, safe, and well-tolerated in patients with PMR and has a robust steroid-sparing effect. [36] Early evidence also supports tocilizumab monotherapy as first-line treatment for PMR, instead of steroids.”

I assume that’s the one used for GCA.

Reply

Convent Cassie,

I would be very interested in the source of the paragraph.

I was involved in the first stages before it went to trial and have watched carefully, at no stage have I seen anything about TCZ being used in any trial for PMR patients.

I could have missed it as I was out of action for about 6 months (op) but this is the first mention I have come across.

Reply

I’ve not seen it either, but “first line of txm” for PMR got my attention.

Reply

There's this:

ncbi.nlm.nih.gov/pmc/articl...

done in Japan - so obviously they are less reticent about using drugs that aren't approved...

and this

ncbi.nlm.nih.gov/pubmed/271...

They are TINY trials - 13 and retrospective in the first and 9 in the second (one patient dropped out - why????) so are likely to appear wonderful. The first study using leflunomide claimed 22 out of 23 in remission very quickly - what do we hear from most patients who are put on leflunomide? It has worked for Lorna and she is finally off pred. But I don't think she has "only" PMR. If it really were that good and safe they'd use it more.

But realistically - what medical system can afford to spend £12K per year on PMR medication given the numbers? And in the UK the NHS would collapse under the burden of more rheumy appointments - it's hard enough to get one when you need one already.

1 like
Reply

Thank you....................so much. The NHS is collapsing little by little and it is so sad to watch what is happening when I have been supported by the citizens in the UK for over 32 years and the burden of parents finding 6d a week for GP's and 1 shilling a week for hospitals.

Over the past ten years, anecdotal evidence from patients who have used 'steroid sparing' drugs, have in the main, to me anyway, been terribly hit and miss. Mind it could be that I only hear about them when they do go have the wrong out come.

Off to have a good read, when the Gold Coast Opening Ceremony closes and it was lovely to see the First Nation people first. Well done 'Oz'.

Reply

Thanks for the link to a great article for me to take to my doctor as well! Everyone certainly knows so much more about PMR, than when I first had it 9 years ago!

1 like
Reply

Thanks for the link and very timely. Off to rheumatology today so will be taking the article with me.

Reply

I hope your doctor was more receptive to the Articles than mine.

Reply

Sorry for the delay in responding. I went to see my roomie on Wednesday and discovered that in addition to what I thought was just bad allergies I have an infection ears and throat. You think for $150 visit I could at least get him to check my ears and throat without great effort. Not so much. I realized he walked out of the room and didn't come back and hadn't done it and I was sitting in the lab saw him talking with another doctor so marched over and announced that he forgot to do so.

I was on 15 mg at this visit and my two inflammatory markers were in normal range. I could tell there was much tension between us. He suggested I consider Consulting with and finding another rheumatologist if I wanted to stay on Prednisone forever period always back to the same topic. I express to him once again that that was not my desire but I needed to taper slower then he has tried me on three previous times requesting the one. This time he agreed. This time he was also quite the opposite opinion of using Methotrexate which was good cuz I have no intentions of doing so. I am 55 it has been 5 months since this PMR began.

so today I am on 14 mg for the third day. I have quite a lot of upper back pain shoulder to shoulder and feel like my sides have been kicked in just an all over achy feeling and have been very drowsy but that could be part of being sick also. I will see my PCP on Monday I suspect for an antibiotic. I just don't understand the adversity from a doctor rheumatologist with updated research yeah he is a proponent of being off by one year. I tried to talk to him about his current and past PMR patient treatments to which she was very vague on numbers or successes other than to say most off by one year but one woman 5 years but no one like me who's had difficulty in tapering~ I can't really believe that or they were afraid to tell him? I hope everyone has a good weekend. I have to clean the living room I have a sofa being delivered tomorrow I've been without one for the last few weeks missing having it to lay down on feeling this crummy. I curled up with my pillow and blanket on the floor last night to watch TV and fell asleep.

Reply

You may also like...