Hello - I am new and wondering if I have to accep... - PMRGCAuk

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Hello - I am new and wondering if I have to accept a trade off re: pain and side-effects.

EscapedtoWales profile image

Hi everyone I am new to the forum - I am so please to know there is support out there and I am not the only one with PMR. I am a 56 yo woman who got a PMR diagnosis 4 weeks ago after being in a great deal of pain for over a year (long story of missed opportunities to put 2 and 2 together and for GP to undertake the right blood tests). My ESR was 120 and my GP started me on 30mg Prednisolone for 2 weeks. It was like a miracle because within 8 hours I could feel my pain lifting and the next day I was pain free. GP reduced my dose to 15mg at the start of week 3 and the next day I had pain. GP said if this happened I should increase to 20mg. I don't have 100% pain relief on this dose but it's more than bearable without pain relief. What I am struggling with are the side effects of the steroids - I feel like jelly when I am active, psychologically I am either hyper or feeling very anxious, I feel jittery and visibly shake, I can't stop eating (craving sweet things and carbs), I am not sleeping well and I have now started sweating profusely! I suppose what I don't know is - should I be aiming to be completely pain free or do I have to accept a trade off with the steroid symptoms? Thank you.

64 Replies

Go to this website and read everything you can, knowledge is power.

Yes, you will feel jittery, hyper etc at the beginning but it will settle down. You have to get that inflammation under control and it is not quick either.

Yo-yoing dosage is not a good idea.

Here is the link to the BSR Guidelines for the Diagnosis and Treatment of PMR

pmr-gca-northeast.org.uk/us...

You can download and keep most of the items on that site if you so desire.

That's really helpful - thank you.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

And welcome.

No wonder you and your body are in a state of flux. Unfortunately your GP hasn’t done very well all round - the starting dose of 30mg is a lot higher than most start for PMR, although I can understand we he did it after so long undiagnosed, but he then compounded the issue by reducing you to 15mg - much too big a reduction. 10% of current dose is recommended - not 50%! No wonder your body reacted like it did.

Pred is a powerful drug and that’s why you feel like you do. Most people get similar symptoms but if you stay at a constant dose they usually settle once your body gets acclimatised to all that extra cortisol sloshing around your body - unfortunately you haven’t been allowed to do that.

Not sure how long you’ve been at 20mg, but you probably need to stay at it for 3-4 weeks to give it chance to settle things down, which it should. The side effects won’t disappear completely, but at least if the pain is controlled you feel a bit more able to cope with them.

Not everybody gets 100% relief, but if you got it at 30mg hopefully once things even out you will also achieve it at 20mg.

Good luck.

Please keep us informed of how things go for you.

I was just reading the Guidance and saw that 15mg is the recommended starting dose. My ESR was 120 which my GP said was very high and that might explain the higher dose - maybe. My friend is a pharmacist and was really shocked when she heard my GP had halved my dose. I think those are wise words - my poor old body doesn't know if it's coming or going! Thanks for your reply.

TJ03 profile image
TJ03 in reply to EscapedtoWales

I don't have to much knowledge or insight but yes halving ur dose so soon and so quickly sounds a bit wrong. And fact it pain came back says it all. The advise seems to be slowly slowly with tapering the dose. Good luck. Tj

Hello AddictedtoRightmive,

Welcome to the site. I am like you in that I have only been diagnosed this last two weeks and been on steroids since 1st October. I am also 56. My response to steroids is very similar.....not having acute pain now, but do still get some to remind me I still have the condition, and yes my muscles especially in my legs feel weak and weary as if I have been over-exercising (as if!!!!) I get the jellies and shakes ( in my hand the other night!) but the fatigue is the worse! I have had to slow right down, and now feel like my mother who is in her 80s. So you are not alone. My moods are all over the place too! I think what we are experiencing is normal (I hope!!).

I truly empathise - but I must admit it is reassuring to know that I am not the only one experiencing the same difficulties. I sort of feel I have swopped one lot of debilitating symptoms for a different lot of debilitating symptoms! I am just hoping the steroid side effects will start to subside soon for us both soon. :-)

Great descriptions of PMR. I can identify with most of what you say. I have had a wild ride and you can read my story via my posts. But most of us on here have. Please please read as much as you can of the posts on here. I think you reduced way too fast. Please be cautious and measured in what you do. Hugs xxxxx

When I saw my favourite GP she looked shocked when she heard the other GP had halved my dose. When you don't know anything you just believe the GP knows best. I am so pleased I found this group.

I just HAVE TO ask this AR!😏 Are you addicted? I fear I may have the same addiction.😀 I have lived in Germany for 47 years and cannot believe how house prices have increased, so often look up R to see, if it became necessary, whether I could possibly afford to return to England.

I am not sure if it's an addiction or an obsession! I have wanted to move to Wales for the last 5 years and I have been watching the market since then. Luckily we are in a position to move next year (hurrah!). I know every house in the area we are looking (Powys) and I keep an eye on sold prices too. I chose the name because it said 'chose a name like a hobby' and I would say Rightmove is my hobby (that could be seen as sad). I also just like looking at the houses we can't afford just to say 'I wouldn't want to live in that....' :-D

UK House prices have gone silly in some areas and hardly risen or even dropped not in others. We recently sold my Mum's lovely little bungalow and had to drop the price by a third so there are still bargains to be had. Having said that if house prices in Germany are lower then.....

We had a house in The Cotswolds until 10 years ago and wish now we had never sold it.😏 We could probably only buy a garage to live in if we had to return there!!

A very beautiful part of the world and yes VERY expensive!

PMRpro profile image
PMRproAmbassador in reply to EscapedtoWales

I suggest you go to the LupusUK forum and read a recent post by Wendy - and the somewhat dire state of the Welsh NHS!!!

Yes it is bewildering and scary xxx

Yes it all sounds familiar to me and probably lots of others on here. Remind me .... What's normal? 😋

I was ESR 127 and I started on 20mg. Total magic within 15 hours. Sadly pred has an awful lot of side effects, you seem to have the ones that a lot of us seem to have. I think the sweating is the worst, awful. It is important not to try and stick out the pain though, if you have pain you need to increase again, you did have a massive initial reduction. Reduce slowly and things should be OK. Having said that most people never get rid of the pain totally apart from the lucky few, but the pain should not really get worse than when first diagnosed.

Hi Piglette - I feel like I am in the menopause again and am getting so embarrassed in work meetings where I am sitting there dripping! Slowly does it seems to be the message of the steroid reduction. I am so pleased I found this Forum - I have been feeling so alone for so long with my pain and then in a state of confusion with the side effects. Thanks for replying.

Chrob profile image
Chrob in reply to EscapedtoWales

You are not in any way alone . . Lots of help here .

Far worse than the menopause. I used to say I had been swimming. This board really helps a lot of people, I am so glad you found it.

Swimming???? Oh my god, pass the towels then. I have been getting more sweats than usual, but wasn't expecting that. Better find my goggles, just in case!!

Goggles hmmmm??

I sweat so much I honestly have no words to describe. You’d think I was exaggerating. It’s easing as I reduce and it was worth it to keep the inflammation at bay xxx

How are you Linda? X

Struggling as usual darling. Oh gosh I hate my own whiny voice! How are you? Actually I had two reasonably good days so that is brilliant!! Xxxx

Hi Addicted - I get the flushes too, but I've also noticed that they're triggered by coffee, chocolate, and spicy stuff - same as a menopausal flash might be. If I have a piece of chocolate I can almost time how long it will take before my neck and face start to flush and my whole body goes warm. The other night it was kind of cold in my apartment, and my normal blankets weren't doing the job, so I took a swig from an iced coffee I had in the fridge and by the time I settled back into bed I flashed myself and warmed up.

As Gwen Stefani used to say, this sh* is bananas.

That's really interesting - I will have to check that out. Beats putting the central heating on :-D

Oh dear! That would be ok if the pain stayed static, but it doesn’t really. It’s coming from inflammation that can worsen. However, the side effects do settle down in time - poor you.

Looking forward to when the side effects settle :-)

Hi Girlfriend..sympathy and empathy coming to you from all of us!

Some important thoughts...be patient with yourself, as you would be with a dear friend, were she living through these first weeks of treatment.

Also, profuse sweating is common. I frequently wear a headband/scarf to sop up the moisture..(.pretending to be Serena at Wimbledon😁.) . I found that approach less annoying than having to mop my face repeatedly.

Stay with us...the answers you will seek, are here. Someone has already walked these steps and is waiting to reassure you.

Kind thoughts, Jerri

Diagnosed PMR, 2013. Currently 6 mg pred.

Thanks Purplecrow - I can't tell you how much better I feel just knowing there are all you lovely peeps out there - I feel truly supported. Hmm... that Serena look sounds like a possible solution to the dripping hair :-D

Addicted, you will meet some of the best people ever on here xxxx

Give the head scarf/band a try...it works! And is stylish, even in fancy places...where I really sweat!🤪

🙏🏽

Haha I love that Jerri!! Serena!!! Yay!!!

A couple of days ago someone asked me if I’d just had a bath as my hair was soaking wet with sweat!!!

I've been there too...

Now i just say, "im taking some medication...."😁..

Hi Addictedto rightmove - I am too! Do you like watching programmes like location, location, location and house in the country or perhaps DIY SOS????

Sorry you had to join this club, but you will find it a Godsend I am sure, just like the rest of us.

Like your GP, mine prescribed 30mgs as starting dose, however he advised me to wait if I could to see Rheumy first. I paid privately to see Rheumy quickly and he started me on 15mgs so I was lucky! However, even on 15mgs I had all the symptoms you describe with palpitations on top. When I went to 12.5mgs most of them stopped except the sweats and fatigue which seems to be a 'plague' many of us have to contend with, even on lower doses.

It does get better, but is very much a journey of ups and downs.

Oh yes - I love all those programmes! We are planning on moving to rural Wales - hopefully in the Spring - so Rightmove is now officially 'my hobby'. If only I could stop looking at those houses we can't afford :-D . Just seen my favourite GP and she has referred me to see Rheumy - think she couldn't understand, with my 'young' age and high ESR, why I hadn't been referred before. She's wanting me to stay on 20mg for 4 weeks just so my body can settle. I must admit I am so happy to have found this group - what a source of knowledge, support and inspiration. I am very much getting the picture there are no quick fixes and as you say a 'journey'.

How wonderful that you are moving to rural Wales. Good luck with the house hunting. Be careful though since moving house is a known stressor and stress aggravates PMR. Several members of this forum have managed a move, but you will need to start any packing much earlier so that you don't over do it, or alternatively budget for a removal company to do it for you!

I was 57 when diagnosed 18 months ago but think PMR was lurking for a couple of years prior to diagnosis. When it kicked off big time I felt I had aged twenty years. It does get better but is a bit of a roller coaster ride.

Hope your 'ride' is a smooth one.

Agree with your comments, stress is a big culprit, I am 56 and just diagnosed this month but like you think PMR was on its way for the past 2 or 3 years, and yeah I feel a lot older all of a sudden! Preparing myself now for the rollercoaster once I start to taper in a few weeks I imagine.

I am surprised how many of us are, as my GP said yesterday, 'very young' to have PMR. Hope both our rollercoaster rides are one's designed for toddlers!

That's good advice - we desperately need to declutter so starting early sounds like the thing to do.

So very sorry you have this so young and have to be at work!!! Don’t know how I’d have managed without lying down in the middle of the day from time to time! Hope you have good working relationships around you who will understand and as everyone says welcome ! You’ll get good advice on this forum! Don’t let them give you BONE medicine without checking into it further!!! All the best!

Yogabunny I must admit I am struggling with work. I haven't told anyone just how bad I am feeling with the steroids. Luckily I can work from home a fair amount and I am not too bad if I don't need to move around much! Any suggestions on reading re: bone medications - I have been prescribed Vit D and Alendronic acid.

Chrob profile image
Chrob in reply to EscapedtoWales

Lots of posts about a/a if you can tap on the search to the right on top , a dexa scan first seems to be the way to go . I personally don’t take them , matter of individual choice .

YOUR BONES: How you can prevent osteoporosis and have strong bones for life naturally. by Lara Pizzorno. I think it is great. She is a bit of a devotee of Pilates..which is fine..but it's too bad she uses it as the be all and end all of exercise.. but ignore the "cultish" sounds of that and go with the information about the bones! It's really a good book. Other than that keep being as active as you can be, weight bearing exercise, Calcioum + vit K27 (Prednisone wreaks havoc on our bones) and some nice jarring to the bones (Ie tap dancing or dancing in general stepping etc.. there is a youtube video of heel drops..) (Especially since you are young and probably not having boneloss yet ) Good good luck!!! Don't take the Alondreic Acid without a bone scan!!!!!!! (just my opinion. I refuse it and already have osteoporosis. there are terrific terrible side effects)

Thanks for the information.

Morning Add, The original dose sounds about right, the sudden drop isn`t. Your GP should know better. The best guide lines are to hit the issue hard, then after a period of say, a fortnight, reduce by 1mg a month until the whole course is complete. Accompanying this must be a calcium tablet and anodronic acid. Keep an eye on any diabetes which may develop.

Saw my fav GP yesterday and she was shocked that the previous doc had said halve the dose. I am definitely getting the message that it should be a slow process undertaken with small reductions.

Just seen a different GP today and she was okay about the 30mg start but was really shocked about halving the dose. I am beginning to understand the need for a long slow slide rather than a big step!

I too have been on 20mg, now on 15mg and reducing to 12.5 on Monday after 3 weeks at 15. Night sweats really bad, so annoying as I had just finished the menopause and also the wonderful hot flushes are back. Delighted to be reducing but a bit nervous as already the pain has returned in my groin, especially noticeable getting in and out of the car and the buffalo hump is back!

However it is the fatigue that gets me and so frustrating with so much to do. I also have a type of haemophilia and noticed I am bruising more easily does anyone know if this due to the steroids?

I had an early menopause so have been free of sweats for seven years until now - very disappointing to get them back isn't it? I started with pain in my shoulder and groin came from dropping from 30mg to 20mg - GP has sent me off for another ESR to see how I am doing. But again very disappointing when you have been pain free. It seems there is a trade-off - I worry about reducing because I don't want the pain but I am very nervous about the the steroid side effects. I think it would be worth you doing a new post about the bruising - the information and support on here seems amazing.

Hi, yes the pred does make you bruise more easily Godrevy but this along with most of the side effects does get better as your body gets used to the pred, if you have an underlying medical condition then mention it to your doc when you next visit. In the early days most of us look as if we have been in a car crash, goes well with the hump and the hamster face. 😂

Welcome to this forum AddictedtoRightmove. You are dealing with plenty of new health challenges all at once. A diagnosis of a serious autoimmune condition in and of itself is enough to throw anyone off.

I was a couple weeks short of 56 when I was diagnosed, and although I was thrilled to have a diagnosis (I had symptoms for 5 months prior), and to have some pain relief from the pred, I was in shock. I had just got married, bought our dream house in a new town, started renovations and retired. You may find that you go through a range of feelings like I did, such as anger, frustration, fear (or pred side effects and future), and frustration in your lack of abilities. Over time I eventually came to accept the cards that I had been dealt (which included chronic, organic knee issues such as OA, meniscal tears, etc). Acceptance brought peace.

It is very difficult to accept not only a diagnosis of PMR, but also that the only effective treatment is pred, with all its side effects (that you are very familiar with). I can assure you now that I'm 6 months into my journey, that things get better. I started at 20mg for 3 weeks, down to 15mg, then met with rheumy for the first time and she instructed me to go down to 12.5 for a month then 10. Tried it and flared, so back up to 15mg for 5 weeks. I no longer go to that rheumy and am supervised by me GP as I taper more slowly (currently at 10mg). I do still sometimes have sore shoulders, knees and thighs but have discovered a few things that help.

These include heat, going in our hot tub is divine and gives me instant relief for a couple of hours - some folks on here swear by heating pads. I sweat around my neck, my hair is thinning a bit and much more fuzzy and brittle, and my legs are covered with bruises. So, I wear a light scarf that helps absorb the sweat around my neck and back of hairline, I use extra hair conditioner and colour it less often, and if need be I wear pantyhose if wearing a dress. I could not afford to gain weight on pred given my knee issues and high blood pressure so I made lifestyle changes and lost weight and am now off of all blood pressure medication. It's awful that the treatment for PMR also causes problems, but for me the side effects are more manageable than the pain when pred is not taken.

You've noted by now that slow and steady is best for tapering, your symptoms rule so listen to your body. Advocate for your health as need be. Inform your friends and family of your condition so they can better understand and support you. Let yourself feel what your feel, no sense in trying to fight it or walk around in a "pretend normal" state, it will likely cause you more stress in the long run, something that needs to be avoided with PMR.

We are here for you, and we understand you better than most will, because we have a lived experience of PMR/GCA. Many on here have more expertise than I, and they are all very supportive and encouraging. Glad you found us and are not dealing with all of the challenges in isolation. Take good care and let us know how your make out.

Thank you for sharing your story and advice. I think what has resonated most for me is informing friends and family - I I have been working so hard to be 'normal' that I don't think anyone really knows how bad I have felt. I sort of feel that I have come to the end of my resilience do it's time to be honest. Could I ask you about diet - any tips? I am veggie and at the moment all I want to eat is cake!

Sharing with those closest to you will provide some relief for sure and make it easier for you to ask for help. They will have more empathy and compassion if they they know what you are truly dealing with and how you are feeling.

I embarked on a low carb/sugar/salt diet, reducing but eliminating totally. I did not cut out any food groups, but do eat more veg and still enjoy protein including types of meat. I don’t eat bread, pasta, rice, potatoes or any baked goods or processed foods (cooking most meals from scratch). I indulge in treats once in awhile but then get right back to my eating plan. This is a lifestyle change for me, not a temporary diet. Down 27 pounds so far. The better I eat, the better I feel.

Good luck with any changes you incorporate.

Hey that a great loss. A few years back I lost 4 stone (56 lbs) on a low carb diet - maybe it's time for me to revisit it as I have put on quite a bit and I am dreading stepping on the scales since starting on the steroids. I did find I lost my sugar addiction and stopped struggling from the sugar shakes, which I seem to have developed big time since being on the Pred. :-)

Wow, so you’ve had some success in the past, so you know you can do it. Good for you! Nice that the sugar shake cravings have left. I still struggle with salt the most.....love dill pickles!

All the best as you tackle one of the most common pred side effects, losing weight while on this medication IS possible. Share updates with us and feel free to post if you hit roadblocks or need encouragement, we are here to support you.

thank you :-)

PMRpro profile image
PMRproAmbassador

56 is not "young for PMR". The rubrics say "over 50" and there are plenty of people under 50. I was 51 when it started...

Yes, these are the side effects of Prednisone. As you wean yourself down to lower doses, the most dreadful will likely subside. So sorry you are dealing with these side effects. I know they can be frightening and doctors really do not prepare you for all these changes. Be gentle with yourself as you adjust. We are here to help you.

Thank you Dream21 :-)

Hi Addicted- Welcome- I am a bit late in responding to this but wanted to add as I was recently diagnosed in September with both PMR and GCA and found it necessary to take a short term disability. I am in the UD but have read in the UK it is an approved disability. You should look into taking time to recover, just dealing with the “so called cute” deserves time away from work. I too had the luxury of working from home but could feel my headache approaching explosion phase when I was on calls. That was the point I realized I needed to remove as much stress as possible, I initially asked for6 weeks/. In the next 2 weeks I will extend my leave to 12 weeks/ hopefully that will give me time to taper some more and get Better handle on the side effects of prednisone. You can check my profile to see my story, I am on 80 mg after a relapse tapering next week and I am also on Actemra now which should help the taper,

Think about taking time for YOU!

Thanks for your reply and sharing your story. Funnily enough I just texted my friend to say how I am struggling at work. I also feel like I have developed ADHD as my concentration is zero - presuming this is the Preferred as I have never been troubled before. I will definitely consider having some time off. I hope you have an easy taper 😊

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