I've just found this forum (all new to me posting on a forum), as I have been diagnosed with PMR recently and am finding dealing with the symptoms a struggle.
I don't have any tips currently but am looking forward to reading about other people's experiences with the condition.
I'm in the early stages of taking Prednisolone, and dealing with the side effects, not least the weight gain.
Hoping to join a local group for some support.
Hi and welcome,
Maybe have a look through this link and maybe a trundle through the FAQs - but don’t try and cram in too much info too soon -
healthunlocked.com/pmrgcauk...
Local groups are listed here - and I’m sure you’ll find them very welcoming and helpful… but there’s always someone around on here if you don’t have one close enough - and there is a monthly online zoom meeting if you cannot find one close by -
pmrgca.org.uk/get-support/g...
When you have got your head around things, please put a bit more on your profile/bio, it helps us to help you… thanks.
healthunlocked.com/pmrgcauk...
Thank you, I will.
Hello,
You very kindly contacted me when I first posted on here with some links for me to look at when I felt ready.
I have read many comments about how helpful you have been, 1 in particular interested me as it was regarding your pred reducing. Do you have a link to this? Or would you be able to send me some idea of how I should proceed.
I had to increase back up to 10mg 4 weeks ago as when I tried to go down to 8mg I got my symptoms back. I read that you should go back up to the last dosage where you weren't getting symptoms, and now realise I tried to reduce too quickly.
I am a bit worried about how long I should stay on the 10mg before trying to reduce again. GP's advice doesn't seem to be working (reduce by 1mg every 4 weeks).
I would be grateful for any advice you can give me.
Thank you
Wendy
You will find the Tapering advice under T in the FAQs - link to them at the top of every thread in a box below the post itself.
It sounds as if the GP has forgotten the important bit of tapering 1mg every 4 weeks - which is that it must be adjusted in line with individual patient responses and signs and symptoms! You don't just taper relentlessly to zero - you are looking for the lowest effective dose which varies from patient to patient. As you get lower you are getting closer - and sometimes 4 weeks is barely long enough for you to start feeling it is now too low.
If you are lucky it is 9mg you need - so stay at 10mg until you feel as well as you did before and then use one of the slowed tapers to try 1/2mg at a time. You may need to take a tapering holdiday here for a couple of months - or it may be longer. But you try a 1/2mg drop and see if you are still OK. If you are, try another. If not, just wait a month or two and try again. But never try to force your way to a lower dose - PMR will always win!!
PMRpro has replied - as she says all plans are in FAQs .. and under 10mg would always suggest 0.5mg a time [many can achieve every 4 weeks, but when using a slower taper that usually becomes 5-6weeks.
I don’t know if you are interested in gardens but there is PMR and GCA GARDENING GROUP that has some lovely photos of people’s gardens which really cheers me up. facebook.com/groups/6288051...
Thank you, I'll take a look.
Hi and welcome!
As you mention weight gain - cut your carbs. A lot! Especially processed carbs, added sugar and most fruit and some veg (root veg have lots of carbs!!!). Pred changes how your body processes carbs and it results in fat stores being laid down. Low carbs helps burn that fat.
This is a great site to learn the basics and get ideas:
You don't have to join anything and pay. You will find low carb ideas and recipes all over the internet these days.
Find out as much as you can about PMR from this forum, website and Kate Gilbert’s book - also join PMRGCA charity for regular updates - good luck
Welcome greencyclist to the group nobody really wants to join! BUT having said that thank God it exists. I don't know what I would have done without this forum. If you're experiencing weight gain already my advice would be to cut carbs drastically. I have gained over 15 kilos in the over 7 years I've been on pred and wish I had been super strict from the start. I'm not very good at weight loss!!!
Hello, it is very hard with the diet when you are feeling sick or just fed up with the pain! I am also trying to be sensible and have changed my diet, lack of excercise is my problem. I work 4 days a week in a standing/sitting job, then have 45 min drive either way. By the time I get home going for a walk is the last thing I want to do. Must get more organised. Thank you for your message, I really appreciate it.
Don't think of it as a "diet" with all its restrictive connotations - it is a way of eating and having cut the carbs an excuse to eat non-carby things you would normally class as too expensive but like. And exercise truly doesn't help much.
Welcome. I have found more info here than from GPs and rheumatologists. Don’t let the doctors taper you too quickly.
So much info here already and as others have far more experience then me, just let us know if you need anything.
Thank you, that's really helpful as I am struggling with the tapering.
The advice on this forum about tapering is the best. Trust their advice as you will feel your best for it!
Thank you, the forum has been really helpful.
Hi lovely....my PMR journey started January this year....I have had more interaction with this group than I have my Dr......but the Kate Gilbert book is brilliant and extremely helpful..... I'm doing my pred taper because of her book and not what the Dr told me to do,......TBH I don't think I've really suffered (Yet).Good luck ......and the advise you find on here is first class and the person telling you usually has first hand knowledge....
Thank you for your comments, I have got the book and also find it helpful.
Hi there, just wanted to say hello, agree with everything said so far about this forum, it has been a lifeline for me trying to navigate my way through Drs and this condition. Recently diagnosed also. Hope your symptoms settle soon.
Thank you, it's so helpful to know I'm not doing this on my own.
Hello and welcome to this wonderful forum ! I’m about 18 months into my journey and the advice and support I’ve received/am receiving is second to none. Good luck on your own journey 👍
Thank you so much for your reply. It really helps to know I'm not doing this alone.
Hi there and welcome, referring to your comment on weight. I've been on Pred for 8 months now and I was advised to as far as possible go on a carb free diet to prevent weight gain. That meant cutting out all bread, potatoes, pasta and rice. I drew the line at beer & wine and allowed myself a glass or two. It was pretty successful for 6 months and I even lost a couple of kg's. I ended up eating a lot of fruit, veg, lot's of cheese and eggs and lots of nuts like pecan. I've slipped recently due to holidays and lots of visitor to our Edinburgh home as the city is buzzing in July / August.
On Pred dosage I started at 15mg/day and went to 12.5mg and then 10mg in consecutive months - it did not work and a lot of symptoms returned. I'm now on my third attempt to get onto 10mg/day and I'm doing it in 1mg steps with at least a month on each mg reduction. This is from the advice I've had on this forum but I've just started so I'll let you know how I get on.
That's interesting as I was advised by my doctor to start on 15mg, reduce to 10mg after a month, then reduce by 1mg every month after. I got to 9mg and tried to reduce to 8mg, then all the pain came back. I will reduce more slowly.
15 to 10mg in one go -much too fast.. as you discovered. I despair of some doctors…
Get back on track -and much slower as we’ve all advised..
It doesn't greatly matter how slowly you taper - there will come a point where the new dose is simply too low and where you have to accept that is where you are at the moment - it doesn't mean you won't get lower, just not yet. A slower start is more comfortable and is likely to clear out the accumulated underlying inflammation better to give you some wiggle room later - but if 9mg is your lowest effective dose for now, you won't get past it without a return of symptoms. And just because the doctor tells you to go at 1mg per month it doesn't mean everyone can or should. Different people need different amounts of pred at different stages. You are you - not your next door neighbour and above all - not the innaccurate image of a patient most textbooks portray and many doctors believe in,
Thank you. This forum is so encouraging.
That is the standard gp advice. 11mg to 10mg is about 1% but as you taper, 1mg becomes a higher %. You’ve prob read by now about really slow tapers but even 0.5mg is less severe.
Thank you for all your support. I've had an amazing response.
Hello,
I was diagnosed with PMR in April this year. Started on 20mg Prednisolone, now down to 12mg. My advice would be to taper slowly and get as much rest as possible.
Good luck
Thank you, the comments I have received on here have been so helpful.
Welcome to the Community- and yes it is daunting if you haven’t belonged to such a thing before!
I’ve had a long journey with some traumatic life-events along the way but am now down to 2mg and feeling ok 🤞
DorsetLady has already responded to you I note. She has done a Simple Taper Plan which is incredibly useful and if you click on her photo and ask she can email you a template to print out. Use that remembering the mantra: ‘not more than 10% every 5-week reduction’ and you have a good basis.
I print off loads of the plan which Newbies snap up at our local monthly meetings! (Maybe you should copyright then DL - but I do give you the credit!)
Hopingsail btw now sailing again and even won some races!
Hello and thank you for your message. I'm finding all the responses really helpful. It's really encouraging to hear that life can get back to some sort of normality. Enjoy your sailing.
TY - and good news on sailing… 😊
Hi, welcome to the forum that is a lifesaver for us mortals with PMR/GCA. There is always someone here to support you. 🌸
Thank you, the response has been amazing.
Hi and welcome! Just wondering what other meds your GP put you on, as a lot of them start patients off with Alendronic Acid without checking the state of their bones first, so it is always good to have a Dexa scan first in case you don't need it.
I've had the Dexa scan and you're right, prescribed Allendronic Acid, which I'm not taking at the moment.
What are your readings? t-scores is all that matters really.
Yes, I checked them and all fine.
Hi! Welcome to this wonderful group. Really, just post when you're down, confused, wanting some information and you'll get the support and empathy you need. I managed my journey by reading and asking questions here. I found the GP just did 'one size fits all', and dished out too many drugs.
The most important thing I learned was to listen to my body. If I was in pain I went back up etc. When I first started on 15mg I felt so good I pushed myself and ended up pulling a muscle in both legs! So pace yourself.
I wasn't good at cutting the carbs, but was sensible and didn't put on too much weight. I did keep up with riding my bike and gentle yoga.
Sorry, this is getting too long! The end is that I'm finally off the pred, after 4 years! I still can't believe it.
Good luck with your journey xx
Hello! Thank you for all of the advice. I also found the doctor (when I could talk to one), not that helpful with advice. I was told to go and listen to meditation music. I'm sure it helps for some people, but wasn't what I needed at the time. I started the Prednisolone last year, but came off it much too quickly as Polymyalgia hadn't been diagnosed at the time. Started taking it again in June this year and know I have a long way to go. Just to hear that I shouldn't follow the rules is such a help. I was beating myself up because I wasn't able to keep reducing as I was told I should.
It's so nice to hear that you have finally managed to come off the medication. I hope you are able to enjoy your life now.
Thank you for all your support.
You have come to right place. We all have suffered through the ups and downs that come with PMR. Our family of PMR troopers are here help you through the battle. All you have to do is ask. Rusty
Thank you Rusty for taking the time to send a message.
Welcome greencyclist62! You will find this forum a Godsend!
Things are a bit hectic here and I just saw your post~!!! Welcome, this is a great group; supportive and knowledgeable !!! I was diagnosed with GCA a while back, I'm in the States. This forum has provided me with info, confidence, hope, patient advocate skills....and more. You are never alone when you have this group in your pocket. So glad you signed on.💞
