Hi everybody. My internet investigations have lead me to this forum.
I'm 76 year old woman previously fit - walking, swimming etc. Started with pain in my shoulders & rump 2 months ago and just been diagnosed with Polymyalgia Rheumatic.
The doctor has started me on 15 mg a day of Prednisolone to be taken long term.
The side effects of this worries me & I'd like to hear from anybody else taking this and how it has affected them?
Hi, and welcome,
Have a look this - healthunlocked.com/pmrgcauk...
Please rest assured you won’t be on 15mg long term, but you will be on Pred long term! And it’s not as bad as people believe!
Pretty well everyone on this forum is on pred. I have been on it for over 9 years - and I have no identifiable adverse effects. Most of the so-called pred effects are also found in a matched population and most can be managed, reduced or avoided when you know how. A good place to start is to cut your carb intake drastically - no processed foods or simple carbs and especially cut sugar. That has helped many of us avoid weight gain, many of us have lost pred-associated weight, and it also reduces the risk of pred-induced diabetes. It also may help the PMR inflammation as sugar and simple carbs are very pro-inflammatory.
As DorsetLady says, you won't be on 15mg permanently, you will get the symptoms under control and then slowly reduce the dose to find the lowest dose that manages the symptoms as well as the starting dose did.
Hi caroli123, welcome. There will be a lot for you to absorb in the coming days. There are some side effects but not many people experience them all or even several.
The main thing to remember is to eat a low carb diet. Reduce bread, potatoes, pasta, fruit etc. This will help you stabilise your weight, help you avoid or control steroid induced diabetes. I have lost weight eating a low carb diet for the past 2 years. If you need to stabilise or increase weight then you can eat a few more carbs and/or proteins.
You will not be at 15mg pred forever. But expect to be steadily reducing pred if you have no symptoms. See what your dr says/does in the coming weeks and ask questions and read old posts if you want. I found this site to be a life saver, especially in the first year. Best wishes. 🌻
I’m 75. I developed GCA/PMR two years ago on top
of fibromyalgia and Sjögren’s. Was given 60 mgs prednisone to keep my sight and not have a stroke. Now on 6 mgs prednisone but just got diagnosed with Lupus. Just started Plaquinil. All this on top of fibromyalgia from 1982. I’m struggling all around with pain. Only time pain was gone was on high dose of prednisone. Make sure you take care of your bones. I did the Forteo daily shot and now I have to address with something else. Don’t be concerned about the prednisone. Dose is low enough to be off in much less time then me. Best of luck.
Hi and welcome, on pred since March 2015 with both PMR and GCA most of the early side effects like a chubby face go away as you reduce the pred. Lots of information in the pinned posts on the right of your screen. If you haven’t been offered a DEXA scan to check on your bone density then ask for one you should also be taking calcium and vit D to protect your bones. Lots of help and good advice here. All good wishes, there is light at the end of the tunnel.
Hi caroli,welcome to this forum,l cannot add much to the previous posts,just to say that the prednisolone does work wonders and reduces the pain of PMR ,usually within 48 hours,which is a great relief.l expect you will have lots of energy too on the higher dose.lt does take time to slowly taper the dose down and you may put on weight at first.There are always people to help you on this site whenever you are worried about anything,l have found it a great help myself .l wish you all the best on your PMRJourney.
Thanks for your replies everybody. I've only been taking Pred for 5 days and already the pain has gone but I worry about thinning skin and increased risk of catching infections amongst many other things if I take it long term.
Already something weird is happening to me. I feel a pressure in my chest & can feel my heart thumping - it goes right through to my back - between my shoulder blades.
It only lasts a minute & is uncomfortable rather than painful.
It started 4 days after starting on Pred - once yesterday & three times today.
I don't know if this is caused by Pred or a coincidence but I've never had anything like this before.
Palpitations can be due to pred - but they can also be due to PMR itself. It should improve as your body gets more used to the pred and the dose goes down.
I have no skin problems at all - even after 9 years on pred. I put it down to NEVER using soap (or anything that foams on my skin, water in the shower only and I use hair shampoo but oly wash my hair every couple of weeks usually. Others swear by Diprobase or Doublebase emollient products. I don't bruise particulalry - even though I also take anticoagulant medication. In all that 9 years I have also not had any increase in infections - the usual one stinking cold per year! I gained weight, I have lost it all.
In other words - by no means all the claimed side effects of pred appear, especially at PMR doses. Everyone is different. But most of them can be reduced or managed when you know how.
You've had good advice about diet - do follow it. I didn't and gave in to the raging hunger and gained 20 pounds. You might find that, despite the deathly fatigue, which the pred doesn't help unlike the pain and stiffness, you suffer from insomnia. I decided to go with the flow and got up and did things, knitting a huge blanket for charity, doing jigsaw puzzles and watching silly old films, then having a nap during the day. As I had GCA as well as PMR, I started on a higher dose, 60 mg, but as I've reduced (now on 9 mg) the bad side effects have diminished greatly.The other real nasty was the swollen feet and ankles - they're back to normal now.
Welcome to the forum. Like you, once I was diagnosed and out on pred, I worried about potential side effects. So I adopted a low carb/sugar/salt diet and lost weight. I slowly incorporated deep water exercises, and do my best to get my rest and avoid stress (not so easy in the early months worrying about my new AI condition).
Not everyone gets all the side effects. I’ve been on pred for a year (starting at 20mg, now at 8.5mg) and have only experienced mild hair thinning, skin that bruises easily, and some mood swings at higher doses. All quite manageable.
Listening to your symptoms and body is key, along with a slow taper. You’ve found this wonderful group of folks who will answer questions, support, and guide you on your way. We understand in ways others may not. Accepting you have PMR, and making the necessary adjustments will make things easier.
What is deep water exercise?
Participants wear a swimmers belt (floatation) around their waists, and in the deep end of the pool do a range of exercises following an instructor who is on the pool deck. The exercises range in areas/muscles that are targeted such as jogging, pushing the water with arms and legs, along with exercises that strengthen your core. At the end of 45 minutes we do a cool down and have a chance to swim laps. It’s also called aqua jogging.
This type of exercise has been invaluable for me given my limited mobility on land while I await a total knee replacement. It’s amazing how much more I can do in the water compared with on land, and I’m “plump” enough to not have to wear a floatation belt, so I’m not impeded in any way.
In the summer months I do the routines in our pool. Shame I can’t do many laps anymore given recent shoulder pain.
I have been on 16 mg to start in 2016. Now down to 4mg. I don't feel prednisone is doing me any great harm, but once you start tapering, you will feel it the renewed lethargy for awhile.
If you have been diagnosed with PMR, you really have no choice, but to take it., and to prevent GCA; it's not the prednisone so much as the disease which MUST be treated. We don't like the weight gain , (which can be managed)prednisone will be your best friend. We are all different; don't let reading on internet deter you. It helps quickly in hours to 3 days; if it doesn't, another diagnosis will have to be considered. Good luck.
If I stopped the steroids and relied on painkillers only but followed an anti inflammatory diet & took tumeric & ginger, exercised and rested when needed is it likely I would still get GCA?
Has anybody ever done this I wonder?
In the main people on this forum are on pred. Some have tried alternative strategies. Some disappear so its hard to know if effective, others eventually try pred and regret not doing so earlier.
In the first instance painkillers DON'T work for pmr pain and stiffness. They can help things like delayed onset muscle soreness. GCA can hit anyone at any time and you are more likely to get it if you have PMR. Loss of sight is a big risk to take.
For me there is a place for anti inflammatory diets etc but complementary to pred rather than an alternative. At the end of the day everyone has to decide what they put in their body. I was comforted by the fact that recent research showed that pred was not as "dangerous" as previously thought. I will try and find the link. Good luck whatever you decide.
The only thing that deals effectively with the inflammation is pred but only about 1 in 6 patients with PMR go on to develop GCA.
I had 5 years of PMR without pred, I didn't even use painkillers much because they did nothing for the pain and stiffness of PMR. It wasn't out of choice - I wasn't diagnosed despite seeing doctors repeatedly, mainly probably because my blood markers may be raised but they are still "within normal range".
Good luck to you if you choose to do that - but NOTHING would induce me to go back there and it has to be wondered whether that 5 years of no treament underlies the fact the vasculitis is still active after 15 years despite over 9 years of pred. I was restricted in what I could do, I had constant pain and that made me bad tempered and depressed and I gained weight because I was inactive. Inactivity is a major risk factor for osteoporosis. So a lot of the so-called pred effects can be PMR effects (there are others besides what I have mentioned).
I can tell you that most people who arrive here scard of pred and insistent they will do it without change their tune after a while, however they try to manage it "naturally". A short trial of pred usually puts the seal on it - you get your life back.
I am on prednisone since February with no side effects.
My GP asked me to try a low carb diet rather than steroids because of the side-effects and the aches and pains receded hugely after 8 days. I have eaten this way now for 8 months and been able to control symptoms with what I eat and 250mg naproxen a day.
I have to say - I'd rather take a low dose of pred than regular naproxen!!!
With my health record steroids are deemed highly dangerous. No problems with naproxen + stomach protector, often take only 125mg and sometimes none at all. Local specialist has reported excellent results with low carb eating.
Well I have eaten low carb for the last 6 years - still need pred! As do a lot of us on this forum with PMR - maybe we get away with LESS pred ...
How were your diagnosed? The most definitive way is response to steroids as not all esr and crp up. Even then it could be something else. I eat low carb and still need the pred to treat the inflammation and pain. After a few months on pred reducing my markers shot up and i had to be referred to theumy to ensure no other conditions underpin it. My pmr symptoms were not touched by 800mg tramadol, co-codamol 500/30 2x4a day, 1600mg of ibuprofen a day, amitriptyline 40mg daily. These were the drugs prescribed for fibromyalgia. Within 4hrs my neck was moving and i felt great... for a bit but i wondered how without pred a dx of pmr was made??
By one of the UK’s leading rheumatologists. He said my symptoms and tests were typical. We tried anti-inflammatories for a time, which lessened the pain and enabled me to exercise more, which also helped, but it was not until I went into ketosis that the pain went into remission.
I would not want to run down any diet advice that people have found helpful but there is another view. Having battled with weight issues on and off for most of my life, I discovered Intuitive eating a few years ago, and have never worried about what not to eat since then, as you just tune into your innate body wisdom, as do young children if they are given the chance, and eat exactly what you feel like (and stop as soon as you are satisfied). I had wondered if it would work with the steroids making one hungrier, but after 2 months it hasn't made any difference and I only put on some of the weight I lost before the diagnosis. This may not work for everyone but it can completely change one's relationship with food!
The encouragement to cut carbs is not just for weight management - it is also to reduce the risk of developing steroid-induced diabetes. It isn't a simple equation.
Hello, welcome and sorry you're here.
I know I felt anxious and sad when I was first diagnosed and couldn't imagine how I would cope. This forum and the forumees have been so helpful and supportive.
I am 3 years in, started on 15mg and have made it just recently to 8mg.
I have no skin probs, no infections apart from a horrible heavy cold last Spring.
I have put on weight and I was morbidly obese to start with. Have recently been diagnosed with Diabetes Type 2 which is pretty amazing when you consider I have been a candidate for that for years.
Enjoy the pain relief from the pred, follow the advice here, read the Kate Gilbert book (which I am sure someone has or will added a link for) and pace yourself.
Oh and Google Spoon Theory.
Bon soiree 
Hi, I am now at 2.5mg after starting at 20mg almost 5 months ago. I understand this is a fast taper, but because of other health reasons feel I need to stop taking prednisone as soon as I am able. My side effects that are bothersome are mainly fatigue and not being able to walk the distances I once could. Lack of strength is noticeable to me. However, I also have arthritis, so have to make determination on which illness is causing my problem. I have occasional discomfit in parts of my body at night, but for me, not unbearable, nor sleep interrupting. I depend on a "good" diet and anti-inflammatory herbs and spices to keep flare up at bay. You will find plenty of good advice, much more expertise than mine, on this forum.
Noosat could you tell me about your' good' diet & which anti-inflammatory herbs & spices you use to keep flare ups at bay. Thanks.
Hello and welcome to this wonderful site
I am 77 was diagnosed with GCA/PMR nearly four years ago and started on 60mg of pred. I am now stuck on 7mg and about to have another try at reducing to 6mg. Although I am not overweight I was diagnosed with type 2 diabetes which is controlled by diet alone but this was not surprising as my mother and grandfather both had diabetes. I also have glaucoma, osteoperosis and chronic kidney disease caused by the GCA. However having already lost several friends to cancer and having two who live with it, I think I am lucky. The secret is to accept that you have good days and bad days. Sometimes you wonder why you feel so tired but then remember that you had two busy days or extra stress or even are on holiday and then sit down and relax. I now find I need a nap most afternoons around about 4pm and am always amazed that my body wakes after one hour. However I also wake in the morning at 5pm with the blackbird outside the window. I feel guilty sometimes that I cannot use the heavy vacuum cleaner, mow the lawn or even hang the washing out but I have a very fit husband who does these things while I do the lighter tasks. Its all compromise really and listening to your body at all times. So good luck on your journey.
Just diagnosed 
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