Side effects

[Medusa6]

My Mum has recently been diagnosed with PMR and has been taking 15mg Prednisolone for 10 days. Her PMR pain has eased but side effects from medication are horrendous. She’s not sleeping- less than 2 hours last night, depressed, anxious, palpitations, panic attacks. Her GP reviewed her today and the only advice given was to try taking Prednisolone at night instead of the morning. My question is does anyone have any tips for coping and are the side effects likely to subside in time? Thanks in advance.

[DorsetLady PMRGCAuk volunteer]

Hi, Welcome to you, and your mum.

No sure that taking Pred at night will help the sleeping, but it may help with the other aspects IF she can sleep - which is maybe why the GP has suggested the change of timing.

I surprised s/he didn't offer a sleeping aid .....it might be worth trying an over the counter remedy - not necessarily every night, but every 3rd or 4th night which means she does occasionally get a decent night’s sleep. That will help her cope during the day, so some of the anxiety may then dissipate.

But the side effects should get better as her body gets acclimatised to the medication.

You might like to have read of this - gives you a bit information about her illness/treatment so you can help her.

healthunlocked.com/pmrgcauk...

.

[Medusa6 in reply to DorsetLady]

Thank you DorsetLady for your prompt reply. GP was reluctant to prescribe sleeping tablets due to the associated addictive issues. Over the counter sleeping aids haven’t helped her so far. Thanks for the link, I’ll have a read.

[DorsetLady PMRGCAuk volunteer in reply to Medusa6]

My GP suggested I took Nytol early days -it is OTC but should be used sparingly... for obvious reasons. So I used it every 3rd or 4th night as I suggested.. enough to help - but not to be reliant upon. Have you spoken to pharmacist for advice on what to take?

[Medusa6 in reply to DorsetLady]

Yes, she spoke to the pharmacist who recommended nytol, but sadly it hasn’t helped her.😕

[Rache in reply to Medusa6]

You’ve probably been well advised by pharmacist but just in case, do you know there are different versions of Nytol, a herbal one and one based on antihistamine which is more effective. Like DorsetLady. I take the antihistamine one for a few nights each week. When I started steroids at 15mg I was a bit ‘over active’ and found it hard to sleep. As my body got used to steroids this improved and then when I reduced my dose, it became even easier to cope with and sleep improved. Hope this helps

[Medusa6 in reply to Rache]

Thank you Rache, that’s encouraging to hear that things improved as your body got used to the steroids and when you reduced your dosage. She’s tried both versions of Nytol but neither have helped. How long would you say it was before your body began to adjust?

[Rache in reply to Medusa6]

It was a gradual thing, unfortunately hard to remember exactly. I was brimming with energy at first, actually felt it as a positive thing for a while. I think after the first few weeks my body got used to steroids and I was able to relax a bit. When I couldn’t relax at night I took the opportunity to nap whenever I could during the day

[DorsetLady PMRGCAuk volunteer in reply to Medusa6]

Okay

[PMRpro Ambassador in reply to Medusa6]

You may need to try different ones - one lady I know used an OTC version but only one worked for her and there were a few options.It amazes me that doctors happily hand out potentially addictive painkillers that don't work in PMR rather than prescribe pred but won't help a sleep-deprived patient who may well develop mental health problems as a result. They can also use melatonin in over 55s for short term sleep disturbances - this fits.

[Medusa6 in reply to PMRpro]

That’s very true PMRpro! The melatonin option sounds worth looking into.

[PMRpro Ambassador in reply to Medusa6]

You can't buy melatonin as such in the UK but you can get precursors that turn into melatonin in the body. H&B can probably tell you what they are.

[diana1998 in reply to DorsetLady]

I used Nytol from behind the counter for a few weeks. Recommended by rheumie. I was on 30mg and was desperate to sleep. It will get better. I went to bed at 2pm for 2 hours too.

[Medusa6 in reply to diana1998]

Thank you Diana, I’ve been encouraging her to try to nap in the afternoon and hopefully the Nytol will help if she continues to use it.

[diana1998 in reply to Medusa6]

If it's the stronger one I sure it will. I didn't find it addictive either. Good luck 🤞

[Purpleazalia]

Hi Medusa, I'm sorry to hear that your mum has the side effects you describe.

I didn't have panic attacks, but had the other side effects you mention. They've improved as I've tapered my steroid dose, but do rear their head again for a week or so as withdrawal symptoms when reducing my dose.

Understanding they were side effects helped a little. I could feel very angry about things that wouldn't usually bother me, and cry at the drop of a hat too!

I decided to adapt to my disrupted sleep pattern by trying not to focus on the fact that I should be asleep at 'normal' times!!

If an overactive brain wouldn't let me get off to sleep, I'd read or get up for a cuppa, then try again later. Sometimes relaxation techniques worked. If I slept but woke at 3, 4 or 5am and couldn't get back to sleep after an hour, I'd get up. If I only slept for 2 hours, I'd try to get another 2-3 hours later (back to bed at 5am!). On days I wasn't working I'd take a nap during the day if needed.

I'm currently taking 8mg/day and usually manage a block of sleep of between 5-6 hours.

I do hope the side effects settle down for her sooner rather than later.

[Medusa6 in reply to Purpleazalia]

Thank you so much for sharing your experience. I’m no stranger to insomnia myself and adopt a similar attitude to yours. I’ll encourage her to try to find coping strategies and when she’s feeling up to it, I’ll get her to sign up so that she can read of other people’s experiences. Thank you for taking the time to reply.

[Thelmarina in reply to Medusa6]

I think the sense of your body giving such pain and it’s impact on your daily life is quite scary. Then you discover that the remedy is scary too! However, your Mum will begin to feel the benefits of pain relief and that will help once her symptoms and the side effects both calm down. This Forum will be very helpful when she’s ready. Just to know that she is not on her own, that people are experiencing the same dreads and setbacks, as well as improvements and coping strategies, will ease some of her anxieties. Meantime she has a very caring and thoughtful daughter- a huge comfort! 🌺

[Medusa6 in reply to Thelmarina]

Thank you Thelmarina for your very kind words and encouragement.

[HeronNS]

I had been a lifelong intermittent insomniac. When I started to take one of my calcium doses close to bedtime with a small snack I suddenly found I fell asleep with no trouble. Since then, the autumn of 2015, I can count on the fingers of my two hands the nights I've had trouble sleeping. Before then it had been quite regular, and worse before PMR diagnosis because of pain. Pred actually was helpful to me, so I'm sorry to hear your mother is having so much trouble. I usually have a little yoghurt or kefir with the calcium, for my stomach's sake, and also because it helps the calcium be better absorbed.

[Medusa6 in reply to HeronNS]

Thank you HeronNS, that’s an interesting insight regarding calcium. Anything is worth a try.

[HeronNS in reply to Medusa6]

I use calcium citrate (or calcium hydroxyapatite which is supposed to be better aabsorbed by people on pred), not calcium carbonate, which can be hard to digest and hard on the system. Something to keep in mind especially at bedtime when one is lying down.

[Medusa6 in reply to HeronNS]

Good point. I’ll also check whether it’s compatible with other meds. She’s on long term antibiotics for bronchiectasis too.

[HeronNS in reply to Medusa6]

Usually the only issue with calcium is the calcium can interfere with absorption of other meds (why we don't take it at the same time as our pred for example) so I expect it would be wise to avoid taking it within 2 hours of her antibiotic.

[HeronNS]

One other thing I've learned is older people who have sleep problems can find exposure to outdoor light, preferably sunshine but that can be unreliable , early in the day actually helps reset the body clock so that sleep comes more easily at the right time.

[Kendrew]

Hi Medusa6.I've been on pred for 2yrs and the positive outcome from that has been the pain relief. Unfortunately, the negative outcome has been all the side effects!

I have experienced a whole host of them at varying times, including extreme fatigue, shortness of breath, palpitations, blurred vision and of course, insomnia.

Over the 2yrs, some of these have settled down spontaneously and for others I've discovered ways to remediate or ease them. The sleep issue remains ever present though but I've started to cope with that much more effectively by simply accepting, that for a while, my sleep patterns are going to be erratic. I have an oil diffuser next to my bed and the aroma of lavender and camomile from the scented oil, together with the gentle quiet hum of the diffuser (white noise) frequently enables me to fall asleep within the hour I set it for.

Some nights, nothing works though, and at these times I just accept that sleep won't be forthcoming, so I relax in bed and listen to music or a 'nighttime' podcast or do whatever I feel is helpful. Howevever, I definitely DON'T worry anymore about not being able to get to sleep, and that in itself removes a lot of the stress and anxiety that often accompanies those sleepless nights.

I'm fairly confident that as your mum gradually adjusts to the medication (and she very likely will) that many of the side effects she's currently experiencing, will either disappear completely or at the very least, will ease significantly. For those that don't so readily, there will always still be options to explore, that either your GP, specialist or this forum can advise you on. (eg. after a full cardio check to eliminate any significant heart issues, I was prescribed a low dose of a beta blocker called propanolol that has sorted out the uncomfortable palpitations I was experiencing)

As things improve, your mum's anxiety levels should also improve and she'll discover her own answers and solutions to her own individual needs. It's a different journey for all of us.

It can seem a scary time at first, but I promise her that as she gets used to her condition and the medication, things will begin to improve. We've all been there and 'managing this condition is definitely not without it's challenges, but as I was lucky enough to discover, she'll find lots of reliable and useful advice and support here and I wish her all the best.

[Medusa6 in reply to Kendrew]

Hi Kendrew, thank you so much for sharing your experiences. I’m sure my mum will be heartened to know others have gone through the same thing and come out of the other side in one piece. This forum is amazing! So very helpful and such kind and understanding people!

[Daffodilia]

I use Tropics pillow spray and temple balm - lavender and other oils - also when couldn’t sleep with high dose of pred got up for 20 mins and had hot chocolate - good luck

[Medusa6 in reply to Daffodilia]

Thank you Daffodilia. My sister just ordered the Tropic Dream Team for Mum. We are big Tropic fans!

[Daffodilia]

Hope it works for you - I often pass samples to friends and family

[Dambusters]

I had problems on 15mg too. I managed to reduce to 10mg and problems eased but still had the sleep problem and panic attacks with palpitations. I changed to taking my medication to evening...after evening meal. I only woke once a night and the other reactions subsided.I am now on 9mg and have just slept a solid 8 hours! I have slight hip aches but I also have arthritis in the spine from a broken sacrum years ago and I have a replacement hip that is quite old now. I use a leg pillow.

I do hope you find a solution for you.

[Medusa6 in reply to Dambusters]

Thanks Dambusters, that’s good to know that some side effects subsided on a lower dose.

[Noosat]

An occasional, Benedryl at bedtime has helped me. It is an allergy medication, O/C. Hope she finds something to help as lack of sleep can be quite devastating. My GP prescribes 10 Zanax pills in a prescription for me. This lasts me at least 3 or more months as I only take one half when badly in need of sleep

[Medusa6]

I think it’s useful to have ammunition in the armoury for when insomnia has devastating effects. Hopefully her GP will re-consider prescribing something if her symptoms don’t settle. So difficult to even get a telephone appointment with some GPs in these strange times!

[mburns]

Yes, I reduced the prednisone dose by half and was able to sleep and all the other side effects were much better.

[Medusa6 in reply to mburns]

Thank you, that’s good to know you were able to sleep better

[Pr0jection]

I haven't been a good sleeper for a number of years but it became slightly worse when I was prescribed 15mg of prednisolone. I'm now on 7.5mg and still wake about 5 times per night. I suffer from an overactive bladder at night, or nocturia, which doesn't help matters. I have found that half or a quarter of a 25mg Unisom tablet has a mild sedative effect. I don't think you can get Unisom in the UK as it's produced in the US. I found it by chance when I travelled to Northern Cyprus (I live in the south). It's a first generation antihistamine, the kind that make you drowsy, and it really helps. I'm sure you could find something equivalent in the UK.

[Medusa6 in reply to Pr0jection]

Thank you Pr0jection. We will look into it and hopefully find something similar that works for her. Horrible to feel so sleep deprived.

[Pr0jection in reply to Pr0jection]

I also meant to say that I have a cup of camomile tea before bedtime and I use a leg pillow. Helps tremendously. I wish your Mum all the best. Prednisolone gave me back my life but with it came certain conditions....

[Medusa6 in reply to Pr0jection]

Thank you for your good wishes and tips. Very kind of you.

[autumnlass]

Hello Medusa6I was exactly the same as your Mum when I began Prednisolone 15 mgms last July. The side effects I found very alarming, the ones you mentioned, and the brain fog was unbelievable.

My understanding GP suggested Amitriptyline 20 mgms, which I did take initially, and it helped, although it causes dehydration I find, but only now take that on occasions when insomnia is really bad. Melatonin gummies I find are better, but one cannot buy them in the U.K, but can be bought online via a very reputable firm called Biovea in the USA.

As the Prednisolone doses have decreased, I do sleep much better. Having been a life long insomniac I know how your Mum must feel, and I sympathise completely. I also find listening to Classic fm whilst resting and preparing for sleep really relaxing and soothing.. there are so many night owls 🦉 out there like us, ones not alone, and that’s a great comfort. Best Wishes 💐🌈

[Medusa6 in reply to autumnlass]

Autumnlass thank you for your lovely reply. It’s very reassuring to know that you’ve found strategies to help you cope. Insomnia can be so very debilitating. I’ll pass on your tips and best wishes.

[autumnlass in reply to Medusa6]

Insomnia is very debilitating yes, and leads to anxiety and depression, as if having PMR was bad enough in itself, although Prednisolone will cause that too. Magnesium is also beneficial too, and I take that at bedtime as well. Music and meditation have been life savers for me. I wish your Mum well. 💐😊

[Medusa6 in reply to autumnlass]

Thank you so much.

[Hidden]

Everyone is different but for me I'm on 12mg and I'm awake at 4am every morning like clockwork and wide awake doesn't matter what time I've gone to sleep but when I was on 10 and 11mg It was between 6-7am, so i think as far as I can tell the lower the dose the better I sleep. Even if it is just extra hr or two not sure if it the same for everyone when they reduce or not

[Medusa6 in reply to Hidden]

It will be interesting to see if she sleeps better when her dose reduces. Hope you can get your dose down gradually

[Bcol]

Hi Medusa6, sorry to hear of you mum's problems. In regard to the lack of sleep, I discovered many years, ago when I was suffering really badly with my OA that stopping worrying about changing/losing your normal sleep patterns took out the stress of the change. To me getting up in the night, either for medication or because it is impossible to get comfortable is/was part of normal life. Lying in bed tossing and turning, worrying and getting very stressed because you are not asleep is no help to anyone. In my experience it is better to get up, have a read, watch some TV, have a hot drink - Horlicks is my favourite but chocolate, even a cuppa will do and then rest/doze/sleep in a comfortable chair or back in bed. This worked for me even when working full time. The other thing is acceptance, an understanding that for the time being your life is going to change and some/many things are going to be very different for quite a while. Life does become easier when you are able to accept/understand that this is the new norm for the time being.

[Medusa6 in reply to Bcol]

I fully agree with you Bcol. Mum is a horlicks fan too and she is certainly getting through some books at the moment!

[Coffeebeans]

Loads of good advice here.

In the early days when I was getting used to the pred I would sleep in the afternoon - that's the most pain free time of day and whilst I felt like I was wasting the day it got me through the days of poor sleep.

I also get the mental health aspects of pred. The mood swings are noticeable and I can cry at the drop of a hat. I found they do lessen as you taper and as your body gets used to the pred.

Getting some sleep in would help your Mum I'm sure. remember that old wives tale when having a new baby? Sleep when they do etc. Absolutely get some good naps in during the day.

I hope things settle.

[Medusa6 in reply to Coffeebeans]

You’re right Coffeebeans! Loads of helpful tips and good advice here! I’m very impressed by the response.

[Liby57]

Hi Medusa6I really sympathise with your mum, I am on Prednisolone and experienced horrific side affects at the start, really bad headaches, depression, anxiety, palpitations, sweating, panic attacks and feeling almost suicidal. Taking Pred in the evening didn’t help me. The side affects lasted for a few months but subsided as I decreased the dosage. I’m very thankful for the support and patience I got from family, I know it was difficult for them understanding what I was going through. I also was fortunate to find this forum where there is lots of great advice and support from fellow sufferers of PMR.

[Medusa6 in reply to Liby57]

Thank you for sharing your experience Liby57. I sympathise with everyone who suffers with theses horrendous side effects. So strange how every individual reacts in a different way. But it’s good to hear from people like yourself who have come through the experience and are able to help and support others. Thanks again.

[Liby57 in reply to Medusa6]

When you first experience the symptoms of PMR that in itself is terrifying and when I initially started researching PMR that only added to my anxiety. I have since done lots of research and finding this forum really has helped, there is lots of good advice, information and support. I am now down to 2mg.

[Medusa6 in reply to Liby57]

That’s really good to know. Thank you and good luck with your recovery.

[Liby57 in reply to Medusa6]

Thank you, I wish your mum well and good luck with her recovery too.

[petros1931]

Recommend meditation, which can help at all times of the day. For sleeplessness, there is nothing better than a small glass of port or brandy. Good luck

[Medusa6 in reply to petros1931]

Ooh! I like the port or brandy suggestion! Meditation is great too though! Thanks for your tips.

[PMRpro Ambassador in reply to Medusa6]

My husband swears by a nightcap - whisky or a Vecchia Romagna

[Medusa6 in reply to PMRpro]

I’ve never heard of Vecchia Romagna so just looked it up. It sounds delicious!😋

[PMRpro Ambassador in reply to Medusa6]

Just Italian brandy really - but it is different ...