Do I have to take prednisolone

[Bessie333]

Recently diagnosed with poly myalgia. I have stiffness in my shoulders in the morning which gets better as the day goes on. I am fortunately not in pain at this time. I have decided not to have prednisolone as it seems the side effects of this drug are severe over time. Any advice would be welcome. I am in my late seventies and generall very well.

[jinasc]

Did your GP explain about the signs to watch out for in GCA?

Not taking pred can lead to GCA coming along and that you do not want at all.

I suggest you take a look at the GCA under Topics on the right hand side of this page.

Currently the only med for PMR is Pred and yes there are side effects - but nobody ever gets all of them and if and when they do come along you can deal with them.

PMR is not a short term illness that goes away quickly it is an auto-immune illness and this means that somehow, and we don't know how or why yet, your body decides to attack itself.

On the right had side of this page under FAQ, (Frequently Asked Questions) please take the time to read' WHAT ARE PMR AND GCA?' Simple explanations of the basics.

Come back and ask any questions you have we are always here for you .

[PMRpro Ambassador]

You don't HAVE to take pred if you have such a mild case that it is entirely livable with. As jinasc has said, should it start to progress in the direction of GCA then you may need to reconsider.

I had a level of PMR that wasn't pleasant to live with but it wasn't diagnosed so I had the pleasure of PMR without steroids for 5 years. My story is here:

healthunlocked.com/pmrgcauk...

If your PMR is so mild, it is perfectly possible you would need only a very low dose of pred and then the side effects tend to be very minor. I have been at between 10 and 15mg for a lot of the last 12 years, I have no identifiable problems that could be said to be the fault of pred - no diabetes, no cataracts, no loss of bone density, no worse weight problems than I have had all my life, my skin isn't any worse than I would expect for my age, I bruise because I take antigoagulant therapy because of atrial fibrillation almost certainly caused by the autoimmune part of PMR. During the 5 years of PMR at the start I had mood swings, night time sweats, poor concentration, weight gain, was immobile which is a risk factor for osteoporosis, isolated because I couldn't go out and depressed.

The lists of adverse effects of corticosteroids are of all the things that are mentioned - no-one gets them all and many of us have only one or two and mildly. They are inevitably worse at high doses as required for GCA - and unmanaged PMR is said to be much more likely to progress to GCA. Then there is little choice - untreatred GCA comes with a real risk of visual loss, we have had several posts in the last couple of years from family members of people who have totally lost their sight because of GCA symptoms that were missed or, even worse, ignored.

It's your choice - but don't be in denial if it gets worse or if any signs of GCA appear.

[tangocharlie]

I'm interested in replies to this as I know someone who takes Naproxen for her PMR and would much rather do that than take Pred. I have no idea if that is a good thing or not.

[PMRpro Ambassador in reply to tangocharlie]

The long term risks of NSAIDs are also not inconsiderable but for many people they simply don't work for PMR and are speciically discouraged in the 2015 Recommendations.

Naproxen is claimed to be less gastro-irritant than ibuprofen but that doesn't mean it is an innocent:

nhs.uk/medicines/naproxen/#....

I have a friend who was told to take ibuprofen for PMR - after 3 doses she was in A&E with a coffee grounds gastric bleed.

[Hidden in reply to tangocharlie]

Naproxen will not touch PMR as you have very mild symptoms I wonder if it is PMR? Try ibuprofen if this manages the pain I suspect that you have something else. If you have PMR it should get worse at which time you will need the pred. Good luck

[Bessie333 in reply to Hidden]

Thank you for the reply.

[cranberryt]

Most of us who are on prednisone have severe, life altering pain. For me, the prednisone changed my life. I went from being unable to walk, get in a car, dress myself, crying at night because the pain was so bad I couldn’t sleep, to getting my life back. If the only symptom you have now is stiffness that improves with activity, you are lucky! I would want my doctor to continue to test inflammation markers every few months. If they continue to rise, it is a sign that you probably do need further treatment. I am actually surprised that they would give a PMR dx with only stiffness and no other symptoms. Generally there is a chart and you have to score a certain number on the chart to get a dx. If other pain killers help, I would question the dx. The only reason most of us are on prednisone is because it the only thing that will help the pain.

[Bessie333 in reply to cranberryt]

Thank you for this. What isPMRdx and where can I see this chart. I am still learning and thank you for your help.

[PMRpro Ambassador in reply to Bessie333]

PMR diagnosis - the medical abbreviation is dx

[Bessie333 in reply to PMRpro]

Thank you

[cranberryt in reply to Bessie333]

practicalpainmanagement.com...

To be clear, I am not saying this is a perfect criteria for diagnosis, it’s just what most US doctors use. Look for the chart with the scoring numbers. You have 3 must haves and then a total of 4 points from the list below. The must haves include over age 50, bilateral (both sides) hip pain and elevated inflammatory markers. Now we know that people under age 50 get PMR and some people have it without elevated bloodwork so take it for what it’s worth. But this covers most of the common symptoms and is what US doctors are taught to use to make a dx.

[tangocharlie in reply to cranberryt]

Interesting article, thanks for sharing. Some of the things on the table of what can mimic PMR also occur alongside PMR, ie you can have both. PMRPro has an article by Dejaco showing that some of these things are possibly the defining path of PMR.

[Benos123]

Whilst I hear what you are saying and note your reluctance towards Prednisolone, however I would advocate that you should at the very least give it a try for a week, which won't harm anyone. After that, you just weigh up the benefits having compared the 'before n after' listing of your present aches n pains! As I approach 70 years and with just 30 odd years of on and off experience with prednisolone, I would best describe it as a benefit that eases your path to the solution. Just give it a go!

[TURQ8]

I want to reply to you as I was Dx in March 2021 with PMR - stiffness began after Christmas and Dx with a blood test by GP. Suggested I take Prednisone with all the other drugs for stomach and bones that one has to take initially. I had not heard of PMR or treatments and decided to take time to research. I am 80 and no health problems until this.

I joined this forum plus some other social media groups and decided to go the way of diet and other alternatives anyway until I see which way things are going. I was warned of GCA symptoms, so certainly look out for those.

I am in the UK and that means pretty much treat yourself at the moment. It is now difficult to get a telephone convo with a Dr. and anyway. I have had 3 phone consultations where I tried to get info from GP on whether the PMR was likely to stay forever or not - if I don't take Pred. No one will commit so far - so I am assuming they don't know.

The last convo with DR he prescribed me 3 weeks Pred at 15mgs per day with blood test at 14 days and Dr phone call for result before the three weeks run out. That is hoping I can get that arranged. He said I must not stop taking them once I started as this would cause a serious condition.?? I was going to ask the group here about that as I had understood that one can take for up to 28 days without serious withdrawal.

However, since then I came across an acquaintance who has been on Pred for 2 years and just off 2 months but she seems worse than she was originally. Therefore I decided not to take anything for the moment.

I have stiffness in shoulders at night and in the mornings. I get up - have a nice hot shower which helps enormously and do a bit of massage and am ok for the day. Driving long journeys I get stiff but just stop and get moving a bit.

I am a textile designer though don't do so much now anyway because of age and covid etc. But I am still able to do everything I used to do. Textile work, gardening, cleaning etc. I do Tai Chi and walk as much as poss. I am about to start swimming again as I think warm water and gentle exercise 3 times a week will be helpful.

I have also followed a Keto type diet - excluding sugar and carbs and keeping to a very nutritious and simple regime. I have found this helpful. I take electrolytes and turmeric ,

ACV, lemon juice with the diet.

I've now gone into a bit of an epistle but there is masses of help online , plus a couple of FB groups diet and PMR support. I would never suggest what someone else should do but I thinks its worth investigating before you take anything as you are not in severe pain.

The more prepared you are the better.

Best Wishes

[Bessie333 in reply to TURQ8]

Thank you for this very interesting email. I look forward to seeing how you progress as we were both diagnosed at a similar time. Keep well.

[TURQ8 in reply to Bessie333]

we are a similar age etc etc. Keep in touch if you like to.

[HeronNS]

My experience may be relevant to your current situation. I know definitely that I had PMR for over a year before diagnosis. During those 14 months or so the pain was becoming worse and worse. All that time I (and unfortunately the inexperienced doctor I had at the time) believed it was just my long-existing osteoarthritis getting worse. When I could barely drive for the pain of such actions as shoulder checking, when I realized I was suffering a catastrophic weight loss, when getting out of bed had become a four step carefully considered plan every morning, then I finally saw another doctor who diagnosed PMR and by then nothing would prevent me from taking my first dose of pred as soon as I could! Prior to that I had noted if I had a headache, for example, and took aspirin for it, the rest of me felt slightly better. I wouldn't say I felt greatly better, but I did note a slight easing of the symptoms. It was nothing like the pred miracle which within three days had me feeling better than I had for years.

That was a long introduction to my main point. I now believe I had "mild" PMR simmering for a long time beforehand, I really don't know how long, but I base that belief on the fact that for a long time I'd had minor symptoms like finding it difficult to stand up after only being seated for a short period of time. With prednisone treatment that symptom has mostly disappeared and remained at bay, although I most definitely have over the past few years had a serious increase in osteoarthritic damage to a number of my joints, but so far hips show no sign! Unlike PMRpro, who was in considerable pain for a number of years, I was able to dismiss my discomfort as being the OA, but I was mistaken. It was the sort of mild PMR you possibly have (provided your doctor has run the relevant tests to rule out other possibilities).

If you can manage a decent quality of life with steroids and without more than the occasional dose of a safe painkiller, I'd go for it. What I would not do is attempt to substitute any other painkiller for pred if you find you need something every day, or if your symptoms begin to build up. If they do begin to trouble you more, don't wait too long for treatment. You want to remain able enough to maintain your level of fitness and continue to do the things which give you good quality of life. As soon as those things become impacted, then the moderate initial and eventual taper to a low dose of pred which manages PMR is by far your best bet.

[Bessie333 in reply to HeronNS]

Thank you for your very interesting email. I do not know if I had any symptoms before diagnosis I would have put aches and stiffness down to ageing. I am so pleased I found this site as is so helpful. I have more blood tests next month and feel much more equipped to speak to my doctor. It seems that a lot of people on this site know more about this condition than some doctors.

[HeronNS in reply to Bessie333]

That's why I thought I should tell you my story (sorry about the length) because it really is only recently that I've come to this conclusion. This is mostly because it is really clear (from x-rays) where the OA is in my body, and it does not match up with where that early pain and stiffness was, nor even with referred pain from an arthritic spine. These pains all vanished with pred, and some did return with lower doses, but not that pelvic girdle stiffness, which I now (after literally years) think must have been an early symptom of what eventually became fullblown PMR. I've been on pred since 2015, most of the time at a very low dose.