Before I get to the point of no return re steroid meds- Prednisolone 1 week duration at mo, I’m interested to know if anyone has resisted steroid meds (I experienced 7-8 weeks of moderate (in my view) pain, which I think I could just about handle again, (working from home and not having to commute have of course made this easier, and this might not be my reality going forward) to see if alternative therapies, diet, supplements, exercise, etc, help. Am I being realistic? Eager to hear individuals experiences.
Can PMR ever be managed without steroids? - PMRGCAuk
Can PMR ever be managed without steroids?
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Georgie7
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Hi Georgie 7,
I asked my General Practitioner and my Rheumy that question and they both said "No"! I have GCA and PMR so it may be different for you but my Rheumy said that if I had been on Prednisone early it (the PMR) would not have advanced to GCA.
I personally have never heard of a substitute, including Actemra, for Prednisone. Remember I am not a medical professional.
Thank you for this information. I haven’t thought of it like that. That treatment of PMR may help prevent CGA, which I understand is worse.
The only known treatment for pmr is steroids and although many people have tried more natural remedies including some downright dangerous ones very few people have had the relief of pain that prednisolone gives by managing the inflammation. That isnt to say that following a more healthy lifestyle doesnt help.some of the side effects from pred. It is reccomended that you follow a low carb diet to avoid weight gain and plenty of people take supplements but ultimately most people realise pred is the only treatment that eases pmr symptoms. I for one after not being diagnosed for over a couple of years would never go back to the pre pred pain I had. There is also the added danger that by not treating the pmr you risk developing gca its sister disease which can affect your sight and require a lot higher dose of pred to treat it. YBB
The odd one or two people come on here announcing they are going Pred free or that x is a great remedy but we don’t hear from them again or at least for long. Perhaps they have ridden off into the sunset cured with no need of the forum, or they were misdiagnosed in the first place, or they are doggedly managing with pain, or too much pride to say it didn’t work, or something else. I recall someone saying they had great results with CBD oil but I’ve no idea what happened to them either. Logic says to me that if there was a common to all great alternative, people would be using it in droves with publicised results. Yes, there’s the idea that big pharma have no interest in natural remedies but I think PMR patients must be one of the most highly motivated groups to find something better than just Pred and don’t wait for the next big invention. Another regular theme that comes with people’s alternative therapies is that they often cost a fortune and anything that claims to be the cure from bunions to cancer, all of which have different modes, has to be suspect. I do worry about people taking high doses of vitamins because a) It isn’t that simple a disease like fixing a head light of a car to make it go and b) It might not be known what the effect is of a long term high dose of a vitamin or other substance is elsewhere. Also, some remedies are not benign such as some good ones actually contain natural steroids which is why they work and some have highly undesirable contaminants and have little or no QA in their manufacture.
Saying all that, attending to every aspect of one’s diet and lifestyle to make it gently the best we can cannot be a bad thing and could lead to better health and faster recovery but it doesn’t usually have the quick fix factor that people crave. Yes, the daily grind of attending to and restricting most aspects of one’s life when one has chronic illness can be beyond tiresome.
A recurring comment is about being able to take the pain without Pred; there is no shortage of bravado. The missing thought there is that pain = inflammation = varying levels of damage over time. As has been said this can develop into GCA and also large vessel vasculitis. I do understand though, the difficult dilemma of taking a drug that feels like it is doing damage and managing without.
Just a thought, what do you do in your daily life?
In terms of what I do most days or what I do about maintaining health? I’m an NHS manager in a UK hospital.......lots of stairs. Try to keep reasonably fit and well. Walk quite a few evenings a week. Just getting back into that after a period of limited movement (until the Pred). I’ve always been a bit ‘fits and starts’ where taking supplements or eating really healthy food is concerned. Never needed to worry to much I guess.
It’s a tricky one to answer because each person is different. It is a good idea to really consider what is happening with the illness, in that for whatever reason the body’s immune system has got confused as to what is foreign and not. It is attacking the arteries to certain muscles, in PMR. The Pred is just there to stop the inflammation, it isn’t a cure. This is a real drain on the body. The trouble is with a moderate dose of Pred, for many it is like drinking Red Bull, so pain gone and wahey let’s just get back to normal or go into overdrive. With autoimmune conditions, you have to be really mindful of your body’s need for rest. People often find that over doing it leads to flares and need for increased Pred.
In time, Pred side effects creep in which need to be dealt with. Muscles can become weaker, less bulky or more prone to injury (PMR does this as well), so be careful. weight gain can occur and risk of diabetes so a very low carb diet will stop this. Reduced salt will stop most of the fluid retention. Sleep may be come more difficult and some people become more emotional. In healthier days one can just run up the stairs more, drink more coffee and hope that the adrenaline of work will push through the tiredness. Now, no.
Foods high in potassium help the loss from Pred. You need vitamin D and K2 for bone health and you may be given calcium. Others take anti inflammatory supplements like turmeric and you can see discussions by searching the forum.
That’s just a bit and I’ll shut up now.
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It is possible to survive PMR without pred - whether I would call it managing it is an entirely different matter. It really isn't much of a life - as it progresses the pain, stiffness and disabilty get worse.
I had PMR symptoms for 5 years without being diagnosed with anything or offered pred. Within 6 hours of taking the first 15mg pred I was able to move without pain, walk down and back up stairs normally instead of stomping down one step at a time like a toddler hanging on to the rail in case I fell and crawling back up on hands and knees, placing the cup of tea as far up as I could reach and crawling up to it.
It started in the early spring when I couldn't sleep comfortably in my usual position with my arms above my head. Over the course of the summer it became increasingly difficult to do my gym classes - I struggled to step up onto the step, in Pilates my balance was not as it should be, I couldn't lie on my side as the outer aspect of my thighs were sore (trochanteric bursitis). The final straw was in the autumn when I wanted to use the cross trainer in preparation for the ski season and after a couple of minutes the pain in my thighs was excruciating and I had to stop. I had to change gyms to one with a warm pool and aquafit classes - that was all I could do and I even struggled with that for the first few months.
That went on for 5 years - GP insisted there was nothing wrong, just my age, the bloods were fine. I was the grand old age of 51 the summer it started!!! I thought I was doing fairly well but was never out of pain. Ever. Then I had a flare of symptoms and another problem that led to me having to stop driving for a while (wrongly as it turned out) and that was when I discovered how bad things were. We had recently moved to a house without a loo on every floor - and doing the stairs so often nearly killed me. I couldn't drive - the only way I could go anywhere alone and even then only if I could drive to the door and not walk. I was confined to the house, isolated and in pain.
I managed - god knows how - to get here to our flat in Italy. It took a full 24 hours and I went to bed for 3 days when I got here. No stairs! Bliss. I managed to get my ski gear to the storage at the bottom of the lift - and dragged myself there in the mornings. By the time I had done one very short run I could move better. After 3 I went home after sitting in the sun for a hot chocolate. I couldn't do one long run - I had to have the rest on the lift. After a week or two it was a lot better in terms of stiffness and the hip pain was a bit better because of no stairs, just walking on the flat. I was almost back to normal as the flare faded. But I still had pain. Every afternoon I spent on the computer looking. And finally found polymyalgia rheumatica - by accident, mentioned in a blog. The lady the GP described fitted me to a T.
I eventually went home in April and went to the GP and told him what I thought it was. He referred me to a consultant, luckily only a 6 week wait. A new consultant - obviously thought PMR was beneath him and he wouldn't listen to my version of my symptoms but he DID give me 6 weeks of pred to carry me over a working trip to the USA for a meeting. That was when the 6 hour miracle happened. It continued through a taper of 2 weeks each of 15/10/5mg - and 6 hours after missing the first 5mg tablet I was in as much pain as before and in bed in tears. A dfferent GP took pity on me and gave me more pred. I returned to the consultant - and he ignored the evidence. in fact, even without a diagnosis I didn't see him at first, I was handed to a GP "with a special interest in rheumatology" who admitted he hadn't a clue. The letter sent to the GP bore no resemblance to the consultation I had had, and everything he wanted it to be had been discounted with tests. Luckily I was moving here so couldn't be started on the drug he wanted to use and was able to continue with pred. No-one here has disputed the diagnosis.
That was nearly 11 years ago. I am unusual, I have a relapsing form of PMR, I never get to a low dose of pred before the next flare happens. Without pred I wouldn't have a life.
The reality is not just a few months and it will burn out - 1 in 5 patients is off pred in under a year, just over a third in 2 years and half by 6 years. Half of patients need some pred to manage symptoms for more than 6 years, nearly 40% are on a low dose of pred after 10 years.
medpagetoday.org/rheumatolo...
And there is no way you can tell which group you belong to in advance - there is no link with severity of symptoms or response to pred.
So, in addition to the fact that untreated PMR may lead to GCA where the choice is stark, use high dose pred or risk losing your sight, do you think you could cope even with what you have now unendingly? And it is quite likely to get worse - one day you too might wake with the flare that leaves you almost unable to get out of bed.
Sorry, I pressed like and I don’t like what you’ve gone through. I just like the fact that you’ve shared all that info as it’s helpful to have the knowledge- even though it’s not what I want to hear 🥴 !
It's OK - I get why it got 8 likes so far!
Its because we all realise we could have been in that boat and like I said there is no way I would give up my pred for an alternative way unless it was guaranteed to rid me of pain like pred does. I would not be able to do the things I love without it.xxYBB
What a hard story to read - but so inspiring. Thank u for taking the time to write it so fully - maybe pIn it somewhere so it always comes up with a query like this!
The important point is, there is, as u say, no knowing which group we’ll belong to, in advance - and progression to GCA is the bogeyman to be avoided if ever you can!
I wish I had the choice. After 3 years of being on prednisone I developed a severe case of osteoporosis. (It also runs in my family) I broke 10 bones in 1.5 years. My rheumatologist is allowing me to take 5 mg a day and I take aspirin too. This combination has reduced my CRP to just above normal although my sed rate remains high. I am in constant pain and there does not seem to be an end in sight. The short amount of time you've taken pred may not be enough to judge yet and the dosage may not be high enough. Good luck to you no matter which road you take.
I fail to understand why they won't deal with the osteoporosis - there is a place for medication there. That's why they are so keen to hand out bisphosphonates - which is silly when you don't yet need them.
I just had another Dexi Scan which showed worsening osteoporosis in my hips. I've done Prolia and Reclase. I'm due for another treatment but I'm going back to Prolia because Reclase made me sick. My rheumatologist is allowing me to take as much as 10 mg in a day on bad days but would rather I stick to 5 mg a day. It's a balance of quality of life versus damage to my body. I've been cursed with a lot of painful health problems in the last few years and frankly it really is hard to put one foot in front of the other some days.
You are not alone there Amkoffee - sometimes you just think "is all this pain worth it". I only take Cocodamol for the pain but I think I'll have to start using something stronger.
It has been known for years that adequate magnesium is essential for rebuilding bone. It enables the cells to absorb and incorporate the calcium. Doctors recommend calcium and sometimes the necessary vitamin D but I've never come across one who knows the need for magnesium. No drug can support bone growth without all the nutrients.
When I mentioned taking magnesium to my rheumatologist she just kind of blinked like she didn't know that. But she's so good that I can forgive this one thing thing.
It is something that English-speaking doctors (USA and UK) aren't anything like as aware of as mainland Europe doctors - not sure about Oz. Here the first thing any doctors asks if you have muscle cramps is whether you have tried magnesium!
The Australian ones look blank if you mention magnesium or tell you that has nothing to do with anything..and then there's potassium which is needed in tiny amounts to get the magnesium into the cell and prevent long QT and likely many other things where magnesium is prevented from entering cells enabling them to function.. but heart is known, also arrhythmia I think?
Yes magnesium is essential to heart function, which has everything to do with keeping all systems on go. Have never seen this reported as the reason, but occasionally we hear of a well-trained young athlete dropping dead of a heart attack during an event. I believe if magnesium level were checked, it would be found to be depleted.
If I am going to have an episode of atrial fibrillation or tachycardia late evening or during the night it often heralds the fact in the early evening by repeated very short periods of tachycardia - literally maybe 10 abnormal beats alternating with normal sinus rhythm. If I notice it, I check it with the pulse oximeter and take a tiny bottle of magnesium picolate. They were used when I was in hospital - if the monitor shouted at them in the staff room, a nurse would appear a few minutes later with a bottle. Not sure how effective it was in hospital - seemed to be a lot of a/f going on - but now if I take it quickly enough I don't wake later at 11.30 or 1am with an hour of arrythmia!
I've tried increasing the magnesium supplements provided by them, they just cause diarrhoea, but these higher dose bottles work well, no GI problems! Not cheap - but definitely worth it. OH has started taking them every few days and it seems to have improved his cramps without any GI effects as well.
Oh - and one cause of sudden cardiac death syndrome in athletes is inherited long QT syndrome.
Before going on Pred four years ago for PMR I tried reiki, craniosacral therapy, acupuncture, physio, cupping, massage, turmeric, CBD oil and others I really can’t remember now. Nothing helped so Pred it was - and it gave me a semblance of my life back. I am managing on 5 mg now, and occasionally have flares if I have done too much or got upset etc, but 5 mg is definitely my happy place for the moment. I still take CBD oil and also Vit Bs, C, D3, K2, magnesium, calcium, fish oil, MSM and kelp. No idea if they are helping at all but take them anyway - but I know without Pred I would be back in bed and unable to function.
Wow! That’s kind of the approach I was thinking of taking. So in your case nothing really helped and Pred has definitely been the saviour then. Can I ask all reading if weight gain has been an issue. My aunt has said it’s the biggest issue she has faced.
I did my best, Georgie, as I was not one for taking pills, but nothing worked. With regard to weight gain, I wish I had listened to my lovely rheumatologist, Dr Rod Hughes, when he told me to go low carb once I was on Pred as it changes the way your body metabolises sugar/carbs and that can lead to weight gain. I thought it wouldn’t happen to me - ha! I put on two and a half stone and am only now slowly getting it off again since doing 16:8 time restricted eating and cutting carbs. Once on it takes a lot of effort to get it off. Good luck with your PMR and Pred journey. ❤️ Xx
Wonder if he has ever told Sarah Mackie that he recommends low carb? We were taling about it once and she said she wondered whether they should be talking about diet more.
I ignored all advice about eating low carb when diagnosed in oct 18 and ate more than a person should of advent calendars that christmas!! Needless to say by the time my daughters wedding came in april 19 I had put on two stone and no longer fit into the expensive dress I had bought. I have since lost a stone but have got pre diabetes so need to do more cutting back. It's been hard but if you set off being good it will be easier and you are less likely to pile weight on. YBB
Doctors are not being pill-pushers for Big Pharma on this. Prednisone is generic and inexpensive and yes, effective in stopping PMR stiffness and pain for many of us. And many of us don’t get bad side-effects, or what we do get disappear as we taper off prednisone. Good luck!
I think it’s the stories about the side effects that I find so scary.
Most of the side effects can be managed or mitigated when you know how. There are 80+ listed adverse effects, no-one gets them all, many get none.
I've been on pred for nearly 11 years, I'm a tad cuddly but that was a problem all my life. I gained weight with PMR and no pred - because I was inactive for obvious reasons. I gained more weight with one form of steroid, on switching to another I lost 35lbs in weight, although I did work hard on it by going low carb. I still eat low carb and weight management is acceptable even if I "could do better". But I have no cataracts, no sign of diabetes, no osteoporosis. And I have a life ...
I love the "tad cuddly"!😂😂
I've lost 2 1/2 kilos in the last three weeks. Don't want to lose any more.
I wish I could!!!!
Did you try the 16/8 diet?
I do only eat between lunch at 1pm and dinner at 7.45pm - except a few morning cups of tea ...
Can I ask whether it is okay to take Prednisolone without any breakfast? This is definitely the easiest meal for me to skip (I don't feel hungry in the morning), but I assumed I had to eat with the medication. I am currently trying to drink a decaf with ghee, coconut oil, coconut milk and a bit of oat milk (for taste only) instead of breakfast, but frankly, I could just skip it if the mediation is not an issue. I also take Omeprazole (I have been doing so for the past couple of months as I had some issues), but I am planning to take a break from it as see how it goes.
If you are on omeprazole then no breakfast probably isn't a problem. Whatever you do though don't change 2 things at once! Do you mean you don't have anything at all or that normally it is black coffee? The only way to find out is to try and loads manage with just a spoon of yoghurt. But when you stop the omeprazole you should taper that too - just stopping can result in rebound acid production, even more than the amount that was causing any problems that put you on it in the first place.
Thank you. I had Ompeprazole when I first started taking steroids. Then one of my rheumatologists told me that he does not routinely prescribe it any more, so I stopped successfully for a few months. However, I started developing acid reflux around mid-morning and pain in my abdomen when I went to sleep. Reintroduced Omeprazole and all was well again. Do you taper it by taking it every other day for a while? I am sorry to keep asking all these questions. The more I learn, the more I am aware of the depth of my ignorance.
Regarding breakfast, would happily have tea or decaf with oat milk instead of this "bulletproof coffee".
Is there a choice of dose? Perhaps a question to ask as a new thread. I just know PPIs must be tapered - never taken one myself! There are people on the forum who have though.
Sure, I will mention it in my next post. Thank you.
Yes I think this merits its own thread as it is important and we have wandered off the original topic of can you do without Pred somewhat
Hi, I have looked it up. There is a suggestion to halve the dose over 10 days if you are on 40mg for example (which I am not, I am only on 20mg), and then take it on alternate days for another 10 days (I will try this next time). Thank you again for pointing this out.
I understand it is best to take pred with food. I usually have it with a banana. Yoghurt with my breakfast later has got me off the Omazeprole which did not agree with me (or me with it!)
Thank you, I seem to tolerate it well. My only concern is the issue with nutrient absorption which I understand can be compromised with long term use of Omeprazole.
Another reason to break from Omeprazole is that acid reduction in the stomach decreases the ability to absorb minerals. Inadequate calcium and magnesium leads to another side effect of pred mentioned above--osteoporosis.
My understanding is that PPIs like omneprasole, lansoprazole etc were never intended to be prescribed for long-term use, so it is better to take the Pred with or after food, for low-ish doses of Pred, might be different if you're on 20+ for GCA
pharmaceutical-journal.com/...
I stopped it completely when I was on 10mg and then the pain started a couple of months later. I will try weaning myself off it again in a few weeks and see how I feel. I think the "long term use" is considered over a year which is some way off in my case.
deleted that link but it didn't delete your comment on it so now it's all on its own if you want to delete it
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