Hi. I am 59 years old and I was diagnosed with PMR in February by my primary care physician after a year of pain and many doctors. I have the added complication of having a bleeding disorder, so no NSAIDS, or supplements like turmeric or fish oil. I chose to not go on Prednisone at the time I was diagnosed because I'm so scared of it. I have great health other than PMR, have always been trim, and athletic, and ate healthy and didn't want want to jeopardize my health.
However, despite being on the autoimmune protocol elimination diet for 2 months and taking supplements and CBD oil recommended by my naturopath, I have gotten progressively worse. A week ago I saw my rheumatologist again. Though all the tests she ran for other autoimmune disorders came back negative, she is still not convinced it's PMR since my sedimentation rate is normal. Only my CRP is high. I finally agreed to go on prednisone, to see if it helps. She didn't do it like most doctors seem to. She started me at 5 mg and said we could go up from there. 5 mg has helped my hips, buttocks, and thighs a lot. It has only minimally helped my shoulders, neck, collarbone, back, and ribs. I'm now increasing to 7.5 mg. to see if it improves the upper body.
I am glad I found this group. The other groups I tried made me even more scared and depressed with so many horror stories of prednisone side effects and trouble getting off it. I hate being so scared.
Sorry for the long rant.
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Navion
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If you have a raised CRP then that is one up on a lot of us - up to 20% of patients have "normal range" markers although that doesn't mean it is normal for YOU. Raised CRP and normal ESR COULD be a sign of GCA so do be aware of any symptoms of that.
The only problem with starting low and going up is that you may not clear out the existing inflammation - and often it takes a longer time to find a good dose. But pred is nothing to be afraid of - it gave many of us our life back and the adverse effects really don't outweight the benefits.
Just my opinion, but if you want what seems to be the lowest effective dose I'd have thought 10 would be better than 5 or even 7.5. I suspect you will have a lower total intake of pred if you start with a dose which zaps the inflammation and then taper slowly to the optimum dose which keeps you feeling good. I've read of people who started with 10 and it seemed to work but the thing is, they then had trouble tapering lower. I was quite classic, started with 15 mg, symptoms all cleared up within about two or three days, and after a month at 15 began a fairly uneventful taper down to 2 where I've stuck for a couple of years. I was down to 3 mg within one year of starting, never put on weight, controlled blood sugar through diet and avoided osteoporosis medication also through diet as well as appropriate exercise.
Don't be scared. I was not diagnosed for over a year and in the meantime I'd looked up my symptoms, found PMR as a possibility (which I'd never heard of before), but dismissed it as I didn't believe I could possibly have something so serious it would need to be treated with steroids. Months later, the day I got my prescription, I went to the pharmacy on the way home, filled the prescription, and took the first pills the moment I walked in the door. I couldn't believe about six hours later feeling very slightly better - surely, I thought, this can't be working so quickly? On the third morning I got up and was puttering around and suddenly realized that I hadn't had to plan how to get out of bed! Life changing, for the better. You just have to manage pred sternly!
No need to be scared, Pred is not particularly pleasant for some people, but that doesn’t mean you will get all or even some side effects. And even if you do, most can be managed. Life without Pred can be much more disrupting and debilitating.
Have a read of the attached, and then come back with more questions if you have them.
Hi Navion. Welcome. I too am 59 years of age, diagnosed at 57.
It is indeed scarey when you don't know what is happening and what to expect. I remember the fear of paralysis that was invading my body pre diagnosis. I remember going from an active, busy life style to being dependent on hubby to help me in and out of bed, wash and dress. Then I took 15mgs of pred and it gave me my life and independence back within 24 hours. My Rheumy, in finding the right dose for me as a starting point, told me not to accept anything less than 80% of my norm function. This, in my case, was achieved at a starting dose of 15mgs. I believe starting dose of between 15mgs - 25 mgs is standard practice for PMR, so your dosage is low in comparison and therefore may not have optimum impact on controlling the inflammation which, as PMRpro says doesn't always show in blood results. So best to let your symptoms lead the way for treatment programme than blood results, especially if you want some semblance of quality of life throughout your PMR journey.
At 15mgs yes I got pred face, yes I had night sweats, even a short phase of palpitations but I could move without pain. I could get on with life albeit at a slower pace.
Now I don't have these side effects at 7 mgs. I do however get bouts of fatigue after I do too much on the good days.
We are all very different and you will find your own way through this roller coaster of a journey - with a little help and support from the wonderful members of this forum who are always on hand day or night.
You can be you on here and know we understand and empathise. Hope you get as much from being part of this wonderful community as I do.
Some doctors and rheumatologist seem to love making prednisolone the big bad guy but it's the only thing that works for pmr and allows most of us to have a relatively normal life. Dont be afraid of it. X
Like you I was scared of pred. I wasn't going to take it - oh no - I was going to find an alternative treatment! But when I looked into it, I could see that there was no alternative that could provide relief. So I gave it a try - started on 15mg - and the relief for me was almost instant - I was free of pain and stiffness; I could go about my daily life again. Initially I was tired and still feeling unwell but I could move - I could get out of bed in the morning! I To pre-empt any pred side effects I immediately reduced my carb intake; I already ate very little in the way of processed foods or sugars (I'm vegan and eat a wholefood diet) so I didn't put on any weight - in fact I lost some. I didn't really suffer any side effects of pred apart from "pred head" (which turned out to be a fine excuse for senior moments!).
When I was diagnosed, the thought of taking steroids seemed like the end of the world - but I quickly realised it's not. It's a means to an end, and it won't last for ever! I'm very fortunate (and it's very unusual) in that I managed to come off pred after 8 months.
So as a vegan, how do you get your protein. I tried a low carb paleo type diet for 2 months and got much worse and the fatigue was awful. I think it was all the red meat, even though it was grass fed, and just not enough carbs. I had to add in some grains and now the fatigue is gone. Do you eat beans? The diet I was on didn't allow them.
Beans, peas, nuts and legumes are a big part of my low carb food (vegan 8 yrs, veggie 22). You dont have to go full paleo/keto etc. Just cut carbs down. Extreme diets have never worked for me anyway - although i realise vegan/veggie seems extreme for some people!!
A balanced diet is the key (whether vegan or not) - I eat beans, pulses, grains, tofu, tempeh, seitan, nuts, seeds, and of course loads of fresh veg from the allotment - especially dark leafy greens.
I didn't mean to imply that I got off pred quickly because I'm vegan - but I do think that a good diet, free from processed food, is important.
I agree. Thanks for the info. I ate well, I thought, before I was diagnosed. Mostly organic, whole foods, veggies, some fruit, fish, beans, chicken, rarely any red meat, sugar and alcohol only on special occasions and a pizza and some beer once a month. When I got diagnosed I went on AIP, which I did horrible on. I felt awful, dropped to an unhealthy weight, and all my PMR symptoms got worse. I am bringing back foods, to get to more of a Mediterranean or even vegetarian type diet. I've added steel cut oats in the a.m, almond butter, and quinoa, per my naturopaths suggestion since I was getting too thin without more carbs. Well see if that changes now that I'm on prednisone. Next I want to bring back in beans. Do you soak all your grains, beans, etc , like many people suggest to make them easier on your gut?
I soak beans before cooking, but generally not grains. If you have problems digesting beans, pulses, etc., try adding a piece of kombu (seaweed) when cooking them. Some people find it helps... and even if it doesn't, at least it's adding more nutrition! I have chia seeds and spirulina every morning (soaked overnight along with some dried fruit) - good boost for calcium, protein and iron.
I think it's important not to cut out carbs completely - just reduce them while you're on pred. I'm not sure what AIP is, but if it made you feel worse it's good that you've ditched it! A balanced diet with few carbs and no junk food is the best you can do.
Hi Navion, I've just joined the group too, so glad I found it. I was diagnosed in December 2018 with raised CPR and ESR plus anaemia, which I believe is common. GP started me on 30mg of Prednisolone - side effects were horrendous and I tapered down in 4 weeks to nil. However, symptoms returned so we agreed to put me on 5mg which doesn't give me the side effects. Last week I had a flare up so GP has increased to 6mg. She has also prescribed Amitriptyline to help me sleep as suffering with insomnia. Not sure if taking the two meds is best idea, amitriptyline makes me feel washed out next morning but at least I can sleep!
Good luck with the 5mg, I am reluctant to go any higher than 6mg though GP says I can go up to 7mg, she's leaving it up to me.
Is the 6mg holding the symptoms? If it isn't you will find that eventually the left-over inflammation will build up until you are back in the same situation as at the start.
The recommended starting dose is 15-20mg for most - I do wish I understood why some doctors start at such a high dose as 30mg - it scares so many patients and they then try to manage on too little which never works for long.
Thanks PMRpro, I think you're right, the 30mg did scare me and put me off steroids although the effect on the PMR was immediate. I must admit, a lot of the symptoms are returning and I don't feel that 6mg is enough, or that going up to 7mg will make much difference. I will try taking 7mg tomorrow, see how it goes for a few days but I think it's a case of back to the GP.
Why not try 10mg - it is still too low really although the international recommendations say not below 7.5mg - but it has worked for some people. They often struggle to get much lower than 10mg though, whereas if you start with 15mg most people manage well below 10mg before getting stuck. It all depends on going about reducing the right way: SLOWLY!!!!!
Thanks, that's really helpful. I don't think my medication has been managed well, I wonder if some GP's are fully aware of the management of PMR. I did try taking 10mg one day last week but felt a bit nauseous the next day so my fear of steroids returned and I convinced myself 5mg was safer! I suppose it's a question of what is worse, the pain or the side effects and at the moment I think I need to get the pain under control.
Fully aware? Most of them haven't a clue and try to treat it like anything else you might use pred for. Even some rheumies forget that if you have a flare pred is the equivalent of the DMARD they use for inflammatory arthritis and you might now need a higher dose for a while.
If you aren't taking enough to manage the symptoms you might just as well take none at all. Did the 10mg work well? Other than the nausea that is. Your body does need to get used to any medication so gritting your teeth for a few days and taking ginger and other traditional anti-nausea remedies may well be enough. It is a horrible feeling but some of the other drugs they might offer to go with the pred to keep the dose lower are a lot worse for nausea.
Yes, I think the 10mg did help with the symptoms, certainly relieved some of the back/hip/thigh pain. I assume it's okay to double up to 10mg, it's not like tapering down where it needs to be done very slowly? My plan is possibly to go up to 7mg and then up to 10mg over a few days. When I did suggest doubling my dose last week, the GP I saw (who was a different one to the one who originally diagnosed my PMR) rejected that as she said the aim is to keep below 7.5mg - which is why she said go from 5mg to 6mg. It is all very confusing!
The aim IS to get as low as possible yes - but she nor anyone else can predict how much any particular person will need so to say this at this stage is silly (I could use other epithets...). The 7.5mg figure is based on the concept that the body produces about that amount in the form of a natural corticosteroid, cortisol, which the body requires to function at all. The body knows how much corticosteroid is present - and, if there is enough,produces no more. So ideally you want to be at that sort of level or less longterm and that will reduce the side effects. That is the theory and ideal - unfortunately no-one has told your body, the PMR or the pred. It will be what is will be and to start with you will almost certainly need a bit more. As time goes on the activity of the underlying autoimmune disorder seems to die down - and then you usually manage to get to a lower maintenance dose. But this may take years - the median duration of treatment with pred is 5.9 years, it is only rarely less than 2 years.
You also need to start by clearing the decks - springcleaning if you like to remove the existing inflammation before you can find out how little effort you need to expend in doing the daily dusting. So a short time of a higher dose paves the way to getting down to her holy grail of 7.5mg. But it is a holy grail and must be achieved. It doesn't come on its own.
This is so useful, it helps to chat with someone who understands PMR. Since being diagnosed in December at age 60, I have found that lack of knowledge of the condition, which I'd never heard of, has been difficult. No-one I know has any experience of it and even I doubted the diagnosis at first, convincing myself that I didn't need the steroids. So glad I discovered this forum, it is good to be able to discuss the issues, rather than the odd 5 minutes with GP's who have been unhelpful to say the least! One even tried to shock me into taking the steroids by saying if I didn't, I was at risk of GCA and would likely have a stroke. Whilst this may be true, it did little to allay my fears about a condition that I am struggling to come to terms with!
Well they were sort of right - PMR is 7 times more likely to progress to GCA if it isn't managed well with pred and untreated GCA can lead to stroke. Not sure I would use the term "likely" though.
The trouble is, most GPs have never seen a case of GCA in their practice, they have probably seen PMR patients but a lot were dismissed as fibromyalgia, depression, "your age" etc. and if they did deal with it as PMR they probably had preconceived ideas about how to manage it and any patient who didn't fit it were led to believe it isn't PMR after all so they went away and suffered.
All of us have walked the walk - we know how much it hurts and how disabling it can be. And we also know rather better than most how to manage it!!
And re Amitriptyline (if it hasnt been mentioned)...take it early 7 to 8pm it will be right for a 10pm to 11pm bedtime and should be out if the system by morning. Are your pred coated or uncoated? (Coloured or white?). If white...ask for coated on next prescription and remember to coat your stomach as you take the white ones. Many people use yoghurt. If white it may account for nausea but suspect the symptoms of pmr wont help. PMR pain made me nauseous before pred fully kicked in at the right dose.
Thanks Poopadoop. I have been taking the Amitriptyline about 7.30pm so I will carry on doing that. My pred tablets are white so uncoated! I didn't realise there was an alternative. I have been taking them with a slice of toast but will try with yoghurt as some days I do get a burning sensation and nausea straight afterwards though this has settled down since the early days. It's hard to tell sometimes isn't it whether it's the tablets causing the stomach symptoms or the PMR - I tend to blame the tablets for everything!
Hi Smithson. Our journey seems very similar. I was started on 5 mg. It vastly improved my hips, buttocks, thighs, and knee. It had done little for my upper body especially the neck and the area between my shoulder blades. My rheumatologist told me to try 7.5 for a few days so I started that today. Like you. I'm wondering if I should just try 10. I think my doctor is being cautious because I was so dead set against taking anything and was so scared of prednisone. I think I'll tell her I'm not as scared as I was and I want enough to do the job. I hope you find a dose that works for you.
Thanks Navion, our journeys do seem very similar. I have been taking 6mg for a few days now but it doesn't seem to be controlling the symptoms so I think a gradual increase up to 10mg makes sense. I agree, my initial fear of taking steroids has lessened and I just want to be at a level to control the pain. In fact the pain I am experiencing now seems worse than before I started the treatment! Hope you find the 7.5mg brings an improvement.
Very possibly because the uncontolled inflammation is building up - you are filling up the bucket with a beer mug while trying to empty it out with a coffee cup and that is just letting it fill and overflow.
Thanks, that is a helpful analogy! I will increase to 10mg and hopefully should see some improvement. The worsening of symptoms seems to have coincided with taking amitriptyline but I assume that because the GP prescribed them, one is not counteracting the other?! I see from this forum that others are on the same combination.
What does she hope to achieve with the amitriptyline? It doesn't help PMR - just add-ons. Which if you were on the right dose of pred might not be add-ons. If you see what I mean.
The amitriptyline is to help with sleep, I have been suffering from insomnia, which doesn't help with the pain. Also, anxiety levels were getting worse, I refused the anti depressants or Pregabalin which were suggested, so this seemed the better option as I took it a few years ago for nerve pain associated with sciatica. She said it would help with sleep, and may help with any pain after a few weeks. It is helping me sleep but I'm not sure of any benefits long term.
It it is very unlikely to help with PMR pain - though I stand to be corrected.
Did the insomnia start with the pred? Or was it part of the PMR - because that is very common too, as is depressive mood and anxiety. Some of that is helped by pred for many people.
To be honest, it all seemed to start with taking the pred and general anxiety around side effects and feeling increasingly unwell. I seem to have got it under control to some extent and having reasonable nights sleep helps.
I can’t take NSAIDs either, for different reasons, but don’t lose any sleep over your inability to take them as they’re fairly useless for PMR anyway! I don’t take turmeric, several people here on warfarin or similar can’t take it either. I don’t take fish oils, but increased my consumption of oily fish which I find beneficial, can you do that?
I too was scared of Pred as most medication upsets me even things like Omeprazole- have been on it for a year now and within 3 hours of taking 20mg was absolutely fine- am now on 6mg -bit stiff and achey in the mornings which passes by noon- no side effects or weight gain- am eating fairly normally, just being more careful not to eat things like biscuits/crisps etc and saving them for treats at the weekend
Not everyone has side effects. My prednisone period was a dream, felt good as new. Post pred, a bit rough but still way better than at diagnosis.
Being aware of potential side effects can be helpful in preventing/minimizing them.
E.g. watch your appetite like a hawk to avoid gaining (a lot of) weight. Especially watch the carbs. I drank herb tea when hungry, filling me with no calories. Don’t let yourself get dehydrated, especially when exercising.
Get a dexascan early on, and ask if Ca, vit d, vit K2 and/or magnesium are recommended for bone health. Don’t accept bisphonates unless the scan results show bone loss/osteoporosis.
Use a pillow between your knees at night to minimize sore hips.
Expect some hair loss (mine happened around month 9). Taking biotin can help make the most of what’s left, and regrowth can be expected. (Some people report newly curly hair, not me so far.)
Make sure those closest to you know what to expect of this disease and what you are experiencing because you don’t LOOK sick, except for a few minutes when getting up from inactivity when you walk like an old lady. In fact, a little puffiness and rosy cheeks did wonders for my wrinkles and appearance.
Know that this disease is highly variable and what works for one won’t work for another.
Good luck and hope yours is an easy path to wellness.
Hi and welcome Navion. You will find lots of great tips and advice on this forum, and feel well supported. I know how scary it feels being on pred, as I too like many others didn't want to take it, and people I have spoken to who don't have PMR can look concerned about me getting off it. But if it's any consolation, folk DO manage to get off it, and Kate Gilbert who wrote a wonderful book called "Polmyalgia Rheumatica and Giant Cell Arteritis: a survival guide" is living proof we can, along with others of course on here. Get her book, it's fantastic. I read it twice over in the early days and often refer to it now (I was diagnosed Oct 2018). Keep posting too! 🤣
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So glad I found this group!
So Thankful I found this group!!
New to PMR GCA - Looking for diet-related treatment
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