reaching out

[Celia60]

Hi everyone, am new here and looking forward to sharing experiences with you all. I was diagnosed with P M R Beginning of March 2017 . Blood tests and a referral to a rheumatologist confirmed diagnosis. Speed up to present day, steroids transformed my life, but like everyone am trying to taper my dose. Attended my first support group meeting today, lovely, friendly people. Ok so just wanted to say hi, will come back with more details another time, not always a pleasant journey thus far, but am persevering and feel humbled by the braveness of some people I met today, coping with really severe and complex problems ,

[DorsetLady PMRGCAuk volunteer]

Hi Celia,

Welcome from the online forum as well.

Only advice I would add to what you’ve already gleaned from your group, is go slow and steady with the tapering.

Good luck, and hope to hear more from you.

[Celia60 in reply to DorsetLady]

Hi Dorsetlady. Thank you. Am reading a book by Kate Gilbert, bought yesterday at group. I had a strange moment this morning, suddenly felt lost and alone, staring at my steroids and not knowing what dose to take. I picked up the book titled, polymyalgia rheumatica and Giant Cell arteritis, a survival guide, found the chapter on tapering and I just knew what to do. Desperate to reduce, anxious about feeling poorly, I now feel I hold a friend in this book. I know to be patient, and now I know why. Brilliant read. Hope this post finds everyone ok. Am on this difficult 10 mg dose. But on I go. Bye for now.

[DorsetLady PMRGCAuk volunteer in reply to Celia60]

Hi Celia,

So glad the book helped, if nothing else it helps you realise that others have been there before you and got through it!

Don’t be in too much of a rush to taper, your PMR is going to last at least a couple of years (if you listen to the doctors) but a recent study has shown its lifespan is more likely to be 4 years (something we’ve been saying on here for ages).

Your illness needs the correct level of Pred to control the inflammation caused by the PMR, and that’s not necessarily the same as anyone else at the same stage, nor what the doctor thinks it should be! It’s what YOUR body needs, so listen to it. You’ll know when it’s happy, and when it’s not!

If you’re at the right level you shouldn’t feel poorly as such, you may get fatigued a lot more than before (that’s all prt of the illness), but you just have to learn to do one job at a time (not something most of us are used to!) and build in rest times during the day. A cuppa and half an hour’s break between jobs helps! And don’t be afraid to say “no” occasionally - it’s time to put yourself first.

Take care,

[Jeniep]

Hi Celia, I am new this sight as well. I started with symptoms in May 2017 but was not diagnosed until Aug. 2017. It sounds like I am a fortunate one. I am trying to get through with ibuprofen instead of steroids. It has been making things tolerable most of the time. I am not sure this is the best course of action. I hope your situation improves soon. I hope to learn a lot here.

[Rimmy in reply to Jeniep]

Hi Jeniep - I hope you get as much mileage from this forum as I have - the contributions here are really wonderful !! I marvel that you have managed so far without steroids - but it also is a bit of a concern as inflammation which is not treated can lead to more serious outcomes. As you probably know (untreated with corticosteroids) PMR in some people can lead to Giant Cell Arteritis where the consequences can become really serious - potential eyesight loss, possibly stroke and/or other problematic outcomes. I know there are some people who prefer to 'soldier on' and try to avoid corticosteroids by using other drugs but it is a 'risk' you have to be prepared to take. There is also recent evidence that Prednisone is not as harmful as once thought :

practicalpainmanagement.com...

All good wishes

Rimmy

[Jeniep in reply to Rimmy]

Hi Rimmy, I am see my Dr. on Monday and I am going to talk about prednisone. I have managed without it and I actually do not take much ibuprofen at this stage. I may be lucky and I a very mild case. After reading many posts I am most grateful for that. I have been concerned about GCA since I started with fairly severe symptoms of such. We did not test for that and those symptoms seem to be less. I am very active in the warmer months and I don't want to spend another summer like the last. I am so grateful for the info and I hope you continue to improve.

[DorsetLady PMRGCAuk volunteer in reply to Jeniep]

Hi Jeniep,

It may not be the best course of action, but if you only have a milder form of PMR then you may get through, sure many have, certainly in the past when many more were ‘fobbed”off by the inevitable “it’s your age!”

However do beware that it can be become much more serious if left unmanaged correctly

Plus, why settle for “tolerable” when you could have “much better” but as we always say, it’s your choice. Please keep us up to date with your progress.

[Jeniep in reply to DorsetLady]

Hi DorsetLady, Thank you for your response. I guess I did not realize that unmanaged inflammation could lead to GCA. I was scared off the prednisone by the list of side effects. I seem to have improved a good bit since last May but I wish I had discovered this site back then. I see my Dr. on Monday so I am going to share some of the info I have received on this website. It has been most enlightening.

Thanks, Pam Lambert

[DorsetLady PMRGCAuk volunteer in reply to Jeniep]

hi Pam,

Untreated It can lead to GCA, not a given but certainly a possibility and you have to consider that.

I know the side effects look horrendous, but most people only get a few - the chubby cheeks for sure, and maybe sleepless night initially, but whatever they can all be managed.

Please let us know outcome of Dr appt.

[SheffieldJane in reply to Jeniep]

Hi Jeniep,

How is your mobility? That was the killer for me, more than the pain. I literally couldn’t get about, or do anything that required lifting my knees up or using my shoulders. Or raising my arms.I never want to go there again. My relationship with steroids has been fairly amicable, we are now planning our conscious uncoupling.

[Jeniep in reply to SheffieldJane]

Hi SheffieldJane, Fortunately my mobility has improved pretty dramatically. Last May I felt like I was crippled. I could hardly get out of bed on my own. My shoulders came later and getting dressed was a painful task. I took ibuprofen for months and seem to improve and now I only take it on occasion. Mostly at night so I can sleep. It seems to hold things till the next afternoon. I do fairly well as long as I keep moving!

It sounds like you have been doing better if you are coming off the steroids. How long did you have to take them? If I should relapse I won't be quite as hesitant about the steroids. I wish you all the best and I hope coming off of the drugs is most successful!

Sincerely, Pamela Lambert

[SheffieldJane in reply to Jeniep]

Hi Jeniep,I took 20 mgs of Prednisalone ( March 2016) until my symptoms completely settled. I think it was about 6 weeks, a kind of faux wonderful really. I then began a slow taper. Getting from 15 mgs to 10 mgs in 1 mg amounts was a bit bumpy but I paused at any sign of trouble, illness or stress, such as travel. I am now a bit stuck at 7 mgs, probably because my own Adrenal Glands are having to wake up. I am trying to get to 6 mgs by reducing by one mg once in the week, then twice, then three times until I am on 6 mgs every day of the week. I honestly don’t feel great and may get my pill cutter out and reduce by 0.5 mgs. At a time instead. I want to get to 5 mgs then rest there for a bit. Without Pred I would have been pretty disabled. If you decide to go on Pred - don’t be tempted to take Ibuprofen as well, it’s too harsh on your stomach. I take my Pred with Yoghurt and honey with no heartburn or stomach aches. It is a wonderful anti inflammatory and all the side effects have proved to be solvable, like insomnia, high blood pressure and high blood sugar. My bone density scan was good too. On the whole I am glad I took it. The worst bit has been chocolate cravings in the evening when my body desperately wants emergency energy. Do you know that they actually do Malteser bars of chocolate?

[PMRpro Ambassador in reply to Jeniep]

There is no virtue in "trying to get through with ibuprofen" as it has as bad side-effects as pred, just different. One lady was hospitalised with a gastric bleed after just 3 doses as recommended by her GP to manage her PMR pain. Long term use of ibuprofen leads to increased cardiac and renal problems as well as the more commonly known gastric issues.

To save me writing it all this article says most of it. They mention the age of 75 - but the side effects are rampant in younger people too when it is used chronically.

newoldage.blogs.nytimes.com...

The others have already mentioned what pred does that ibuprofen doesn't do - it isn't a simple case of pred bad, no pred good.

You have no idea how long your PMR will last - I had mine for 5 years before diagnosis and ibuprofen never did more than take the edge of some of the pain so I rarely used it. Now I CAN'T use it as I am on other medication which makes it totally contraindicated. Pred is my lifeline - and I have no problems with it.

[Jeniep in reply to PMRpro]

Hi PMRpro, It sounds like you have had a really difficult time of it. I am now to the point of only taking ibuprofen on an as need basis. I can't imagine 5 years before being diagnosed and not know what is going on. I see my Dr. Monday and I will see what follows, I still have symptoms but not as bad as before. If I regress to pain like I had in May I have no doubt I will be trying the steroids. Best of luck and I hope you are pain free at this point.

Sincerely Pam Lambert

[Hindags]

Hello there. Would love to hear your story. I was diagnosed with PMR Dec 2016. Also tapering. Now on a DSNS 38 day from 7-6, Day #4. Had a surprisingly good day today for absolutely no good reason. Go figure. Wish I understood so I could repeat.

[Jeniep in reply to Hindags]

Hi, my story is a very weird one. I have always been in pretty good health, very active and so forth. I was working with a nature group pulling invasive plants in a woodland not far from our house. We worked for about 4 hours. The following week my hamstrings were so tight and my neck was very sore. I thought I just over did the physical activity. I also had a sinus issue and went to my GP. She treated with a nasal spray, although I told her I was going to be leaving for 3 weeks and didn’t want to deal with it. I also told about my knees were so aching.

I went to Arizona and New Mexico for three weeks and I was so ill. I had a temperature most of the time, my legs hurt so bad I could hardly get up. After getting up we went hiking although much of it was excrutiating, I did not want to waste our trip.

I went back to GP when we returned home, still having sinus issues and leg pain. She gave me antibiotics for 10 days. That seemed to help sinuses for about 10days. Then it blew up again. I went to see an ENT and Allergiest and I had enflamed sinuses and allergys, who doesn’t have some allergies?

I was still having painful hamstrings and knees, I contributed this to pull plants for 4 hours on a hillside but that was now a couple of months ago.

The ENT was prepared to do a surgical procedure on my sinuses when I told him they were starting to improve, but knees we still painful. This is when I was sent to a rheumatologist. He intially thought PMR but then did test for spondylitis. PMR was diagnosis but hesistant to recommend steriods and I was not anxious to try them. I still have a thickening i the back of my throught and have had my tongue turn blue on 2 different occasions. I am not sure what that was about. I developed should pain a little later in the game along with the blue tongue! None of it makes sense to me. I do have the genectic marker for athritic conditions. However helpful that is.

Crazy times, hope you are doing well!😁

Pam Lambert

[PMRpro Ambassador in reply to Jeniep]

I would suspect a vasculitis of some sort. But not necessarily GCA. What do you mean by "blue tongue"? That can happen as ankylosing spondylitis - but did the rheumy rule that out with MRI?

However - I'm sure you have seen enough here to know that no pred is NOT necessarily a good thing, especially if it is a vasculitis as the inflammation is causing damge to your body all the time it is not managed.

[Jeniep in reply to PMRpro]

Actually he did a CT scan to rule out ankylosing spondylitis. I guess I did nit think of that. I think I am going for a second opion to OSU in Columbus. I would like more information.

Thanks for your help

Pam Lambert

[PMRpro Ambassador in reply to Jeniep]

All I have read about AS is that MRI is the modern gold standard, replacing CT:

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

So yes - I think a second opinion may be a good idea.

[SheffieldJane]

Hi Celia and welcome, welcome!

[Insight329]

Hi, Celia and welcome to the family. It is humbling, isn't it, when we hear others' stories, especially when their road has been more difficult that the one we travel. Empathy and gratitude: good things to learn.

[Hindags]

Thanks for the details. Our individual journeys are remarkable. PMRPro posted a link to an article by Dr. Eric Matteson tali king about differsions of vasculitis. It might resonate with you.