This is my second post because I became ill over Christmas and the new year. It started with my hip and groin pain about 2 months ago, which I thought could be the beginning of my hip 'going'. However after some heat treatment, I recovered overnight.
But just before Christman, I foiund my back, 'angel wings', shoulders and arms incredibly weak and I couldn't lift them up, especially in the morning. Getting out of bed was agony and getting dressed on my own, disastrous. I just about managed it, but my daughter managed to get an emergency doctor to me. She thought it polyneuralgia which was confirmed by an immediate blood test. So I am on 15 mg of Pred + preventive pills for stomach and calcium. Miraculously, the pain had gone in five hours and providing I take these pills in the monring, I am more or less pain free.
But I read of everyone else being on much lower doses, down to 1 or 2 mg. I have joined your Forum as a member and the stories you tell are all most alarming. So what have I got into? It;s obviously going to be at least a 2 year job (I am a young 77). Will I also get a moon face and put masses of weight on? What are the other things likely to happen to me? Having just lost 9lbs on the Keto diet, I am heartbroken it may all be wasted. Indeed is the Keto diet good to follow now?
So why the high dose for me I wonder? Is that usual? And will they be able to get it down for when I am to have the vaccination - shouild be in the next tranche. Will there be time to reduce it or will I have more agony as a result of the lower dose?
Sorry to be asking such basic questions to you experienced ones, but I had no idea that this is obviously quite a serious disease and will I ever be cured?
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Silver-Babe
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Yes thank youi for your marvellous information. It is Biblical and I do appreciate it very much. Have been much encouraged by you and this whole Forum. Thank you again.
Hi Silver-Babe, welcome to the forum. You would have read by now that your dose is the usual starting dose. Very good news that it's working so well for you, it did for me too. Keto also sounds good and moon face is not inevitable, I didn't have one, and once you get to 10mg and below, it tends not to be an issue anyway. Look after yourself and this will be an easier journey. I wish you good luck. Vx
One thing I worked out for myself, but doctors often forget to mention it, is not to take your calcium supplements at the same time as steroids. When I first discovered this forum, I read lots of posts and learned many useful things.
Hi, I have had PMR for nearly 4 years and like you started on 15mg and now down to 4.25mg. I taper when I feel up to it but have struggled to get down from 5mg. Do not worry so much about this illness. It is life changing but not life ending and in some ways my life has changed for the better. My diet is better and I exercise a lot more than I used to, by that I mean walking and in a day I walk over 6 miles. I will walk instead of jumping in the car and with my weight loss (no longer obese) I feel happy that if I should get COVID I have a better chance. So not all bad.
Yes - you'll get your head around it. Bit by bit. You (we ) start at 10 / 15 /20, and then we taper gradually. Please don't be alarmed, it just takes time and patience. 11 months ago I was absolutely appalled by the notion of being on steroids for 2+ years on steroids. But it's mostly ok.There are so many wise and experienced members of this forum who will guide and advise you. Stay with the forum and All The Best. Things will get better.
Don’t panic. Yes carry on with your Keto diet, it’s spot on for combatting Steroid weight gain. Most of our weight gain stems from the voracious appetite we develop. If you take charge immediately with a low carb/sugar diet you may avoid this completely. The other weight gain cause is being more sedentary due to the illness, work in some gentle exercise if you can. Most of us start on 20/15 mgs of Pred and taper slowly to the lowest possible dose that controls our symptoms. You probably happened upon a thread talking about symptoms further on in the disease. Patience and acceptance really help with this disease. There is a very good chance that it will go into remission if you manage it carefully. One step at a time. 🌼🌼
Acceptance of the condition was key for me, and once I knew what I could control (diet, rest, exercise and support), and what I couldn’t (the course of PMR), a lot of fear dissipated.
I started on 20mg, but still managed a 30lb weight loss following low carb/sugar/salt eating plan, so your keto diet will be fine.
Not everyone get all the side effects from pred. My hair texture changed, I bruise easily, perspire in the early hours of the morning along with extra urination during that time. All manageable.
Don’t be in a race to lower your pred dose or you could see a return of symptoms (which are key indicators for some folks). It will require adapting to your new lifestyle but look at it this way, that’s something the whole world is doing now anyway. I will say after 2.5 years with PMR, I’m doing much better than the early days.
The folks on this forum are very helpful and we “get it” better than most. You are not alone, we are right here if you need to ask questions or vent. Take good care and be patient with yourself as you work through all the emotions a PMR/GCA diagnosis brings.
PMR is life changing, but steroids are a wonder drug. You do need to learn to rest and not overdo things or the PMR will come up and bite you. I was told if I gave up gluten and simple carbs I would not get a moon face, it did actually work but it may just have been luck of course. If you reduce slowly and respect the PMR you should be fine. In addition I don't know if you have been prescribed vitamin D and calcium and also you should have a Dexascan. This is to check your bone density as steroids can affect it. Good luck.
Hi silver-babe, one of the hardest parts of receiving the PMR diagnosis is then getting your head around the fact that you now have a chronic, probably long term illness that you had never heard of and that for a while, will change the way you live. Once you accept that and the fact that Pred is going to be your friend for quite a while, life gets easier and more straightforward. Many of the side effects of Pred can be managed with diet and way of life and not everyone experiences any or all of the problems. Your starting dose is the norm and not high as you have probably realised now. I started this journey on 30mg and so far I have had very few, if any, of the possible side effects, that is not to say they won't arrive later. Unless you are on other medication then you should be perfectly OK with any of the vaccines in the UK but if in doubt check with your doctor. Don't forget to take your Calcium supplements in the evening and not at the same time as your Pred.
I've been an intermittent insomniac since childhood. To me it was normal. When I learned through the forums that I shouldn't be taking my calcium supplement at breakfast with my pred I switched to near bedtme. I have a little snack, usually a small glass of kefir, sometimes something more substantial if I'm actually hungry, but not right before lying down, usually somewhere in the last hour before I want to lie down. Had been taking calcium at suppertime, but that moved back to either mid-morning or lunch,depending when I remember.
Two things happened. I stopped falling asleep just before the culprit is uncovered at the end of a tv mystery show, and began falling asleep and staying asleep at bedtime. So, the mid-evening nap was being caused by supper calcium, and the falling asleep at the right time was the result of taking calcium later. As I'm retired it's of little consequence if I nod off for a brief nap some afternoons but I don't plan any intentional naps.
(The dose I take is in a formulation for bone strength using calcium hydroxyapatite two capsules, 300 mg each. Probably a good idea to make sure you take a calcium supplement which isn't hard on the stomach. Some people find calcium citrate easier to take than calcium carbonate. I believe calcium is better absorbed with yogurt or similar, and I also have heard that it's a good idea to take it with citrus fruit. Wonder if that makes carbonate more digestible?)
Good morning, I am a 60 year old lady and started with symptoms in October. I started taking pred at the beginning of December and have had no problem. Started on 15 mg and after a month dropped to 12.5 and hopefully drop again after a month. No weight gain, no moon face. I do exactly as I’m told by the doctor and also listen to my body. I’m quite into fitness but some days my muscles feel tired so will have a lazy day. I know this condition is different for everyone but don’t let it define you. From what I’ve read it can also be a long road but the long term outcome can all be positive. Good luck to you and take care x x x
Poly Myalgia - not polyneuralgia - probably autocorrect poking its nose in but if you want to look anything up it needs to be the right spelling!
You have no grounds to panic at all - 15mg is the bottom of the starting dose range and you got the required response. I'm on 15mg - and many are on more than that but we get our flu vaccines and will be getting the Covid vaccine when it is offered, But you won't stay on 15mg forever if you follow the usual form of PMR - you start with a dose that is likely to be enough for everyone and then taper slowly to find your ideal dose - the lowest dose that gives the same symptom relief as the starting dose did. Half get to 5mg - a low dose - within 18 months but there are different forms of PMR and everyone is different in how their PMR progresses and in how they respond to pred.
I have a particularly stubborn form and am still on pred after 15 years of PMR symptoms - but that is very unusual. But I am on 15mg pred at present and have no sign of problems - no change in bone density, no sign of diabetes, weight gained and weight lost by eating low carb, I manage a normal sort of lifestyle for my age although I don't ski any more - but that was due to injury and other illness more than PMR, I did ski for years. Part of my need for pred is managing another medical problem.
Don't apologise for asking questions of the experienced - that is why we are here, to tell new people that life with PMR is manageable with pred and nothing to be scared of. In a year you will look back and see how far you have come - everyone does even if they are horrified at the outset. The trick is to learn to accept your limitations - acceptance is key to a happier life - and to resist the temptation to push through pain or fatigue because it never works well. Each of us has our own baseline level of activity. Some can can still walk for miles, some are struggling to walk around the supermarket with the aid of a trolley. Neither is wrong - and one shouldn't look down on the other and tell them they need to do more nor should the other force themselves to keep up with anyone else.
WEll first trhanks for putting my spelling right! I've only ever heard the word, never read it till I came here. And thank you for all your long and most vaulable advice. You people are so much better than doctors who have never told me any of this! Thank you
I think you'll find that many of us started on 15 mgs or more and have been told to reduce gradually. So what you are taking is not a particularly large dose.
Marvellous to read that you had a "miraculous" response to just 15mg prednisolone. Please don't be alarmed by what you read here, as not everything happens to everyone in the same way - for example, I would say I had a 70% response to pred, so no 'miracle' for me!
It is understandable that many of us experience a grief reaction to being told we have an illness we've never heard of - polymyalgia, by the way. We start off in denial and feel angry and depressed about it - "Why me?" etc. However, learning to accept the diagnosis and how to best manage the condition can lead to acceptance. This time next year you will realise how far you've come. It is a condition that goes into remission for most people, which is better than some diagnoses we might be given in our 70s!
You will learn a lot here, but can ignore the posts that don't relate to you to avoid being too alarmed.
Well done with your weight loss - keep it up. It's not a given that you will gain weight on pred - I haven't and didn't develop moon face.
There are several posts on here dealing with the vaccine issue and all the links say we can have it. Discuss it with your doctor.
I seem to ahve been lucky Rugger, but yesterday, wa a bit alarmed to find my left arm aching in the morning. I can see it is still in me. Rushed for the prednisolne and it soon cleared up. Let's hope it lasts. STeroids do seem to be a miracle mask of the symptoms, I am now learning to say!
Why worry about things that may never happen? After 24 months I am down to 2mg., never got moon face, nor put on weight. I have tried to concentrate on what I can do, not what I cannot. In the beginning I had to lift one leg at a time to get in the car and bathtub with my hands. Now I step in and out easily without pain. I am fatigued in the afternoon, however I get up at 5a.m. so I accept this and have a rest. During these days it is easy to think negatively, but I will not allow it. It is my birthday on Sunday and as we are not going out to restuarants, my daughter is making shrimp scampi and we will have a bottle of champagne.Try not to stress, because that can bring on bad results. By the way there are people on this site much younger than you. PMR is not choosy. It is extremely cold here, but I must wrap up, go to grocery store and also pick up some more pred. Good Luck this year to all on this site !!! Hope we have many happy days ahead.
I couldn't think o fhaving another bath. I got stuck in my daughter's bath at Christmas and was trapped ther for about 40 minutes. It was terrifying, but finally with the help of towels, managed to haul myself up. Anyway, I'm learning!
What a horrible experience ! I shower but have to get in bath to do so. Six years ago, my son-in-law put railings on tub wall for me. Fortunately I have never needed them, but they come in handy when I do stretching exercises while under hot shower.
She really is !!!!!!!! I have a very good son living near me too. In December he drove me 6 times in 2 weeks to San Antonio, about 1 and half hours away, to doctor to prepare me for aortic valve repair. Never a complaint, took a book with him (our family members are all great readers)and just waited in hospital or doctor foyer until they were through with me. His wife is Chinese and sends me lots of goodies from their gardens. We are all being very careful right now and don't get together as much as we would like. Next summer I plan to spend time near Leslie, son, and Emily's swimming pool.
Hello Silver Babe.... I joined this group a couple of years ago and it has proven to be absolutely superb.
I started on 90mg of Pred and have been tapering forever (so it seems) I had a GCA and Polymyalgia diagnosis from my GP and was put on 90 mg immediately.
To say it has helped would be an understatement but every taper down has been a nightmare and so very tough on me.
Be well and check in here with any questions, no matter how silly they may seem
So many questions and lots of answers. You’ll see by now that everyone is different in how they progress.
Just listen to your body and don’t ignore symptoms. You will get through this in your own time and look back at how well you’ve done. Just don’t be impatient as it will not work. You have done well with your weight loss and that is a great advantage.
I’m nearly 7 years GCA & PMR on 8.5mg second time around. Best wishes.
On a lighter note ... I was just thinking this morning how much I miss the weight loss before I got diagnosed (LVV). I had lost 40 lbs, looked great, but was still eating like a teenager. The other symptoms, though, were nowhere near as much fun. ;^) I've been more than happy to have had those eliminated, even if it means I've put many of those pounds back on.
As i said before, I am vain! So I really must not cheat at eating! Yet with the Keto diet, you can have double cream, oil, cheese, eggs, salami, gin and diet tonic - all the things I love. everything except carbs and sugar. So it fills me up and I don't pick any more
I’m sorry to have to say “welcome silver-babe” but as others have already said you’ve come to the right place. I was diagnosed last summer, started on 15mg and now almost down to 8mg. Everyone seems slightly different - were are all individuals after all - but we understand and people on this forum are ever so supportive. Keto seems the way to go and as you already do that, don’t stop! I wish I could give up bread, grains and potatoes. But I haven’t had cake since I started on the pred.
Hi Silver-Babe, I live in Australia where little is known about PMR. I have been on the journey for 2 years and have made plenty of mistakes by thinking I know best, but I am so fortunate to have found this group who have put me back on track several times. Best advice from here? Do NOT be tempted to taper too quickly. I have experienced 3 flares and they sent me back to square one. Ask questions of the fabulous people here who know more, often times, than your doc. I am down to 4, feeling great at the moment but I never take that for granted, things can change, so listen to your body. You will be fine.
OH, how I envy you the sun. I was born in OZ, and have never got used to the cold, dull days that we occasionally get in the Texas hill country. We had snow, not usual, two days last week. I miss taking my Lily dog to the undeveloped river park., where I do actually hug the wonderful trees along the banks and watch the birds. Last week saw a baby blue heron. There are lots of young hawks and others. It is very windy to-day as well as cold, so I have to watch the wood peckers and other yard birds visit the feeders.
Understood Australia! Good luck to you too. At least you Aussies aren't catching Covid! My son lives in Perth and he and his family are having the time of their lives, the lucky things.
My two daughters, their husbands and 4 grandchildren live on the East Coast of Australia in Sawtell. I’ve never been more relieved that they are safely there, living the dream. Even the three year old can surf.
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