4 Dya into Prednisone

[balamuti]

Hi all, I am 4 days into a short course of Pred 30mg, by yesterday I felt tons better, no more stiffness, I can bend my knees, scratch my back, sleeping is not as painful and there is no where near as much pain. I really do not want to continue taking these drugs after all I have read about them, it is obvious they are helping my inflammation but is there any other alternative?.

[DorsetLady PMRGCAuk volunteer]

“I really don’t want to take these drug, is there an alternative” - Short answer - no!

Unfortunately there is no drug that will eradicate PMR, or at least the symptoms we call PMR, all the steroids do is control the inflammation produced which in turn causes the pain.

You say you are on a short course of steroids, well sorry, but it’s going to turn into a much longer course, albeit not at 30mg.

Some on here have tried to “manage” their PMR without steroids, and I’m sure they will be along with advice, but they are few and far between.

Have a read if the attached, it may help you understand PMR better, and Pred is not as bad as it is painted!

healthunlocked.com/pmrgcauk...

[balamuti in reply to DorsetLady]

The short course is to see how I react them and if they help my pain and inflammation. I am being paranoid maybe but I think my face has puffed up a little after only 4 days, I do feel so much better though without the stiffness and pain. I'll have to see my doc and see what dosage he suggests. Thank you for everyone's replies.

[DorsetLady PMRGCAuk volunteer in reply to balamuti]

If you’ve improved then it’s likely to be PMR. Hope doctor will give you sensible tapering plan to get to level you actually need. Not too drastic!

Good luck and pleased keep us informed.

[PMRpro Ambassador in reply to balamuti]

That could be just due to fluid retention at the high dose. Try to restrict your salt intake - that should help.

[SheffieldJane]

There is no such thing as a short course of Prednisalone for PMR or GCA. It is the only drug we have so far and as drugs go it’s pretty amazing. Side effects like weight gain can be dealt with ( severely restrict your carbs). Members of this forum are pretty good at living with their conditions and accommodating the side effects of Pred. If and when you cease to take it, all the pain and stiffness will come back I’m afraid. I don’t want to bombard you with more info at the moment, we’ve got heaps. PMR/ GCA will run their natural course maybe 2-6 years if you are average. The steroid keeps the inflammation controlled while this happens. Nobody ever wants to take steroids but alas it is all we have.

PMR 28 months reducing to 6 mgs from 7. Started on 20 mgs.

[Chrob]

No one wants to take pred but the alternative is being unable to function. I have been taking this since Jan 17th 2017 and am pretty sure I will be taking them for quite some time yet , can’t go back to how awful it was .

[SnazzyD]

I think we’ve all wished we didn’t have to take it at some point. Another thing to consider is that even if you tough it out a put up with the pain, the inflammation can be quietly causing damage to your circulatory system, possibly allowing development to GCA or large vessel damage. Sorry. On the brighter side, you can reduce side effects and it gets better as you reduce, but slowly.

[PMRpro Ambassador]

Is there any other alternative? The short answer is no I'm afraid!

PMR is a chronic condition caused by an underlying autoimmune disorder that makes your immune system unable to recognise your body as self - and so it attacks it as it would an invading virus or bacterium. That is what causes the inflammation which gives rise to the pain and stiffness. Pred manages that inflammation to allow a decent quality of life in the meantime until the a/i disorder burns out and goes into remission.

PMR has a median duration of 5.9 years, less than 1 in 5 are able to get off pred in under 2 years and they are at a higher risk of having a relapse in the future. Untreated PMR is more likely to progress to GCA - its big brother version which affects arteries in the head area and can reduce the blood flow to the optic nerve. If that happens you are at great risk of losing your sight which can be permanent. If the sight in one eye is lost and very high dose pred is not initiated within a few hours the chances are high that the other eye will go too. Even if it doesn't affect your cranial arteries the inflammation may be causing damage to other arteries and increasing the risk of cardiovascular disease and even some cancers.

Pred isn't perfect and most of us have wished at some point we didn't have to take it. I suppose if there were a guarantee that it would burn out in the 2 years so beloved by doctors it might be worth being stoical and sticking it out. But it isn't. I had PMR for 5 years without pred and the blessed relief on taking my first 15mg of pred was such that NOTHING has ever made me feel I wanted to go back there. It isn't that I haven't had pred side effects, I have and some were awful and I have been on pred for 9 years now, but they never were worse than the constant pain of PMR and all that goes with it, depression, being unable to do anything - I'm sure you know what I mean.

Most side effects can be managed reasonably well when you know how - no-one gets all of them and some get none or very few. You won't start at 30mg - at least I hope you won't - 20mg or even 15mg is enough for most. And then you taper the dose to find the lowest dose that manages the symptoms as well as the starting dose did. Which is usually well under 10mg if you go about properly - i.e. slowly in small steps. At that level the side effects are actually probably non-existent - the so-called pred side effects at PMR doses would probably have occurred anyway:

practicalpainmanagement.com...

Pred has a very bad press - and a lot of it is fake news.

[balamuti]

Has anyone had any nerve problems connected with PMR? currently I have severe nerve pain in both arms, radial nerves. I think it may be coming from my spine/neck.

[Angie6969 in reply to balamuti]

Hi Balamuti,

I had a 2 level anterial cervical discectomy with fusion in April this year but wasn’t connected with PMR I also had a bone spur that was pressing on my radial nerve that was causing severe pain and pins and needles! so they shaved that while in there, you need to be referred to a spinal surgeon. I had my OP at the Walton Centre in Liverpool everything went well then all of a sudden in June I started with this horrendous pain and in July was advised by Walton hospital it is likely PMR started on 15mg Pred at 4pm on a Friday afternoon and by 6pm I was running around the house thought I was Wonder Woman and on the Monday morning I couldn’t move at all and had to be helped out of bed and down the stairs. This group is a god send and I’ve learnt so much just by reading the posts. Angie

[Grants148]

Hi balamuti,the previous posts have covered the information you needed,l always hoped that l would never need to take steroids,but l would be in a very disabled condition had l not taken them.The change in me was amazing,like you all the pain and stiffness had gone within a couple of days, l have been tapering down for two years now but l know that PMR is still lurking there if l try to stop them altogether,and sometimes it can flare up if you overdo things,it is something you will manage ,you will soon know when you need to slow down and have a rest. Please keep posting and let us know how you are getting on,this group has really helped me understand PMR .Best wishes,Patricia.

[Qubbie]

Try the ketosis diet. An anti inflammatory diet. It will not take away symptoms but help them. No carbs or sugar

[balamuti in reply to Qubbie]

I’ll try anything at the moment, I’m very active still despite my pain. Definitely going to start keeping a food/pain diary.

[xdbx in reply to balamuti]

Welcome to the club no one wants to join! You will find so much friendly and expert help and support here.

If you're interested in other approaches you could also look at the AutoImmune Protocol - AIP. You'll find lots about it online. I recommend Dr Sarah Ballantyne's approach for starters: thepaleomom.com/start-here/...

I'm doing it and it's brilliant but very challenging and takes determination and commitment but it sounds like you have those It covers all the lifestyle areas that are key to health and wellbeing for people with autoimmune disease - diet, exercise, sleep, stress management, socialising.

Remember though that, like steroids, it isn't a cure for PMR but it does help to identify individual triggers and sensitivities and help us to be as well as we can despite having an AI condition.

I'm also taking Pred! I don't want to be on steroids, no one does, but it's the only immediate way to manage the PMR symptoms that get in the way of living my life - pain, immobility, fatigue etc.

Others have relied on diet alone but they report a lot of pain over a long period and my concern would be that it isn't enough to manage the inflammation running in the background that can do so much damage long term.

So I do both. It is a slow process. Think tortoise and hare...

Please take it easy. Exercise is important but keep it very gentle especially at the start or you could be at risk of a flare and having to increase your Pred dose...

Good luck!

[balamuti in reply to xdbx]

Hi there,

Has anyone found that certain foods make PMR worse? Garlic for example, I usually eat lots and lots of it but it boosts ones immune system, I'm going to try cutting it out completely along with sugar.

[xdbx in reply to balamuti]

Yes there are a lot of foods and food groups that many people find exacerbate their AI illness.

Garlic isn't on the list though because the onion family is anti-inflammatory, so I'd keep it in.

Definitely cutting out sugar is a very good idea as it's problematic for everyone, especially processed sugar. A little honey or maple syrup occasionally for a treat is ok.

Broadly the list of FOODS TO INCLUDE is:

* most vegetables (ideally organic) - include a wide variety and think rainbow of colours covering half your plate

* meat (ideally organic, grass fed) and especially offal - liver is one of the most nutritionally dense foods on the planet!

* fish and oily fish (ideally wild-caught) and especially oysters & mussels are very high in nutritional density

* poultry (ideally organic, free range)

* healthy fats - olive oil, avocado oil, coconut oil, beef tallow, pork lard,

If you can't get organic grass-fed etc then get the best you can find/afford and don't stress about it.

If you're really serious about this the AIP list of FOODS TO AVOID, for at least 30 days before slowly reintroducing them, is:

* alcohol, all grains, dairy, legumes, eggs, nightshades, nuts, seeds - including coffee + chocolate, seed/nightshade-based spices, processed sugars.

These are all pro-inflammatory and/or can irritate the gut and result in further inflammation.

Diet is such an individual thing and foods one person can tolerate another might not, so it's a question of quite scientific trial and error. If you're up for it there's lots of very helpful guidance online. Your food/mood diary would be very handy here.

[balamuti in reply to xdbx]

Thank you so much, I thought garlic boosted the immune system therefore sending any auto immune into overdrive?.

[xdbx in reply to balamuti]

I understand you want to avoid immune boosting foods and I wouldn't eat a ton of garlic but in 'normal' doses it's great for flavour and has many benefits.

The main problem with it however is if you have SIBO (small intestine bacterial overgrowth) as well as PMR because it is a high FODMAP food (FODMAP is an acronym for the chemical names of certain sugars that can be fermented by the bacteria in SIBO) and can cause extreme pain and discomfort. I think you'd know about it if you had it!

If you prefer to leave it out then do, especially if you feel you may have been eating too much of it

[HeronNS in reply to balamuti]

I would add to xdbx's excellent and detailed reply the addition of fermented foods. If you are not used to these add them slowly in small quantities to allow the gut microbiome to adapt. They include yoghurt, kefir, some cheeses, like brie, kombucha, fermented vegetables of which sauerkraut is the best known but there are many others.

[xdbx in reply to HeronNS]

Oh yes absolutely! I'm so lucky my OH home-brews our water kefir and komboucha and I've just bottled my very first batch of sauerkraut. We eat it like a condiment with most savoury meals. So good! Going to try fermenting courgettes next...

[balamuti in reply to xdbx]

Another question if you don't mind. I have had in the last two weeks very bad jaw pain, also I've had a sore throat for the last 3 months and also very bad headaches, could this be GCA?, I had never heard of it before but it says that it presents PMR symptoms, getting quite worried now.

[xdbx in reply to balamuti]

I'm no expert and others here will know more than I do about GCA but I wouldn't hesitate to get this checked out asap. If necessary I'd go to A&E.

At least you're already taking some Pred, although that may interfere with GCA diagnosis and you might need to be on a higher dose.

I'm sorry to sound alarmist but it's just not worth the risk!

[PMRpro Ambassador in reply to balamuti]

Those are symptoms that COULD suggest GCA, yes. They are definitely something to bring to the attention of your doctor - and as soon as possible.

[PMRpro Ambassador in reply to balamuti]

Celtic on this forum used turmeric and garlic in cooking - and found it helped her. But everyone is different. There are no hard and fast rules as to what to eat or not eat. I eliminated nightshades for a long time - no difference except my diet was rather boring! I was gluten-free when PMR started and I'd had periods with no alcohol - no difference!

[wigglesworth]

No

[Hidden]

Hello Balamuti

Welcome 🌺

Sadly there is no alternative & Dorset Lady & PMRPro have given you all information you need for now.

Your Doctor has given you a good dose to start with to hit it on the head so to speak. He will reduce it to a lower level with a tapering schedule, so you can get as low as possible while keeping the symptoms at bay.

Prednisolone has such a bad press but it’s a saviour to many not just people with PMR/GCA

Very Best Wishes

Mrs N 💅🏼

[balamuti in reply to Hidden]

Hi Mrs N. I think the relief I’ve felt over the last two days has made me realise even more just how much pain I was in. So far I’m trying my hardest not to give in to this, I run, I’m also an amateur boxer and I cycle. I’ve been a bit of a martyr trying to push through 😞. Thanks for all of the help on here, I’ll keep you updated 👍🏼.

[Hidden in reply to balamuti]

Ah, Balamuti

You need to rest especially at the beginning, running, cycling & boxing! You can do some exercise but ‘been a bit of a Martyr trying to push through’ is not the way forward at the beginning especially, some of us could barely walk or dress ourselves.

Please take it easy to give the Pred a chance to do its work & then consider slowly introducing your Sports at a lower level.

Very Best Wishes 🌺

Mrs N

[PMRpro Ambassador]

Despite the pain relief the pred gives the actual disease is still active and attacking your body leaving your muscles intolerant of acute exercise - a bit like real flu but much longer lasting. Pred also doesn't help. Would you train/compete while you had flu? It is generally recognised by sport medicine experts that it can actually cause damage doing so, so cutting back makes a lot of sense. You may have been able to do it last month - this is this month and you have a new normal. That is about the biggest learning curve - finding your new limits which are a lot lower than they were just a few weeks ago. This is a serious and chronic systemic illness - don't forget that.

I told someone on another forum about skinnyjonny - there are some posts from him on this forum and he is on Twitter. Google skinnyjonny John Robson to get some links. He was a firefighter and training for a marathon when PMR struck and put him in a wheelchair. He started with hydrotherapy and 18 months later was back to running a 5K I think. He later did 10K and is now back to climbing mountains. It can be done - but not by trying to push through at this stage. Men also tend to have a shorter and easier journey for some reason plus everyone is different. But the carrot is there to be patient.

[balamuti in reply to PMRpro]

Thanks for your reply, some great help on here!. I have realised that I need to be sensible, and that I need to reduce high impact sports such as boxing! I've had multiple injuries over the last 3 months that are taking a very long time to heal, this is obviously the reason why.

[PMRpro Ambassador in reply to balamuti]

Yes - your muscles develop DOMS in response to far less activity and then take a very long time to recover. It does get better and you can train once the pain is improved - but you have to start with baby steps - as if you had never done anything before and were starting from scratch. No weights, 5 reps, no repeat reps - that low! And preferably not every day at first - that will come later.

[Hidden]

I was in your place about a month ago. Short course, worked like magic and I felt I could take on the world! But a word of caution; after the 4 days I had to wait a week whilst GP sorted out prescription. First three days were fine, then everything came back. The short course effects were short lived.

I don't ever want the pain or life limiting effect of PMR again and after reading a lot, particularly here, I've now accepted steroids will be part of my life for quite some time. It takes a while to get your head round it all, but I'll take quality of life every time. It's not all bad news and many don't suffer from serious adverse effects. I hope it works out for you. 😀

[PMRCanada]

The folks here have shared important info to guide you moving forward. I too have altered my diet and revised exercise post PMR diagnosis accordingly. I experienced the “honeymoon” phase when first taking pred (after 5 months of non-diagnosis), and did way too much activity. Now I have found a good balance of activity, rest, and revised low carb/sugar/salt diet. Thus far the only side effect I’ve experienced is my skin bruises easily. I’ve been on pred since May 1/18....starting at 20mg, currently down to 13.75.

This forum is very helpful. Wishing you all the best on your journey. We are here to help.