Finally got a diagnosis of PMR this week - 3 rheumatologists arguing it out. All the classic symptoms but blood not confirming it. Anyway, now I'm terrified I've pushed too hard for this diagnosis and the effects of steroids will be worse. Don't know what to ask really, guess I just need a virtual hug from people who know!
Glad to get to know you all. Xx
Hi and welcome!
I had 5 years of PMR with no pred. I have had a further 11 years of pred (don't worry, I have an unusual version of PMR with no sign of anything else so far). The effects of pred have been far preferable to the time without them - some of the so-called pred effects also occur with untreated PMR. I gained weight with PMR, was moody, volatile, bad tempered and depressed due to being in pain and disabled. My hair changed. I did gain weight with one form of steroids - but when I cut carbs and switched to another form I lost 35lbs in weight.
No-one gets all the pred effects, some get none - you have to wait and see for some. Most of the adverse effects of pred can be managed, avoided or mitigated when you know how. Cutting carbs drastically, especially processed carbs and added sugar, will help avoid weight gain and reduce the risk of developing steroid-induced diabetes. It also seems to help reduce inflammation and symptoms for many people. Pred isn't all bad.
Thank you so much, I didn't expect such a quick reply - I'm sure you'll hear from me often as this adventure progresses.
Everything PMRPro says, plus, if it is the right medication it’ll work and if that is the case, you need it. It isn’t a cure but it is the one thing that stands between you and damaging inflammation while your body decides it doesn’t need to attack itself. Not everyone gets raised markers which is documented but some docs didn’t get the memo.
Welcome, this is one of the most supportive groups you'll meet, feel free to share any fears or ask any questions.
There are quite a few of us here and we're all surviving, you'll be fine.
Have you started the steroids, if so did they work their magic? If not you may relook at the diagnosis of PMR.
Not yet. Because of COVID my prescription is in the post. Hopefully here Monday then we'll see. Fingers crossed.
Why not have your prescription delivered to your local chemist and ask for them to be delivered to your house. I just email my surgery telling them what dose I will be on for the coming month and the local chemist picks them up and delivers them. Usually within 48hrs. It takes a lot off your mind.
I will bear that in mind for the future. Thanks.😊
Hi,
As others have said - welcome.
It seem scary to start, but it’s not really, it’s just the unknown that’s scary.
Have a read of this (not too scary hopefully) - it is a bit long but might help you to understand what it’s all about.
healthunlocked.com/pmrgcauk...
Thank you, I'll read it right away. Seems to be a lot of kindness in this group.
There is a lot of kindness...and knowledge...and experience. So just ask!
And a degree of madness ...
Well that goes without saying- and we don’t want to frighten newcomers too soon... let them bed in first 🤣😂🤣
Hug!!! Welcome, hope you feel better when you start your meds. Hopefully a smoothe journey!
A few tips:
Take your pred with food and plenty of water.
Take you food lightly spiced and hold the salt. Skip the empty calories. Eat the rainbow. Everything in moderation, including abstinence.
Unless medically contraindicated, you should be taking calcium and Vitamin D supplements to help alleviate pred side effects. Take them at least 4 hours before or after your pred. It is unlikely that you'll get enough from dietary sources alone. Lunchtime is a good time for this.
Some people have trouble sleeping while on higher doses. Don't let that become a source of worry. If you can't sleep, find a comfortable spot and read, listen to music or books on tape. If you're restless, work on a quiet hobby like knitting or sewing. (I polished the silver.) Cut your caffeine intake after breakfast. If your schedule allows, grab a nap and/or a period of deep rest (where you do nothing much at all) during the day. If this gets out of hand, talk to your doctor about sleep aids.
Some people get a little more emotional than normal. (Remember PMS?) This isn't a license to misbehave, but warn family, friends and coworkers (and bosses) so they know what it is when they see it, and hopefully let it pass over their heads. Apologize later. If this gets out of hand, talk to your doctor.
Gentle exercise is key. Your aim is to keep flexibility and range of motion. Pred predisposes us to muscle and tendon injuries. Pace yourself carefully. Take frequent rest breaks. Listen to your body when it tells you to slow down or stop. You don't want an injury, because it will take longer to recover than normal, and add stress on your immune system.
Don't be afraid to ask for help. Plenty of people who know and love you will be willing to lend a hand with shopping, laundry, cooking, cleaning, gardening and all of that can be fun if you're determined to have a good time with your company. Plenty of folks would love to help out and just don't know what to do. Tell them. They'll be grateful for the chance.
There's plenty of knowledge, experience, expertise and wisdom on this forum, and quite a bit of laughter and joking, too. Very likely, no matter where you are on your journey, someone has been there.
So hang around. Ask questions. Read up on the old posts. Let us know what you learn. We're all in this together.
WOW! Thank you so much. I'm starting to get a feel for what I'm in for and it's great to know the support is there. Still scared, but once I begin I think I will cope better knowing there are so many of you to ask.
Hi GG
I'm very interested in your advice on taking calcium vit D3 4 hours before or after Pred. I have been taking my morning Evacal chewable tablet shortly after taking Pred. as didnt see any contraindications in the leaflet.
Could you please explain reason for 4 hour gap.
Many thanks
Hi Carol, I made the same mistake at the beginning. Prednisolone interferes with calcium absorption. This is one of the ways in which it affects your bones as well.
Thanks so much I had no idea. I must change my routine. So difficult to remember to take all these different pills at different times when you're not accustomed to taking any medication.
Indeed. I have also learned that I can't have grapefruit or liquorice (don't like either anyway) and I take my Magnesium supplement last thing at night, away from calcium.
Carol remember as well that you shouldn’t take it at the same time as eg spinach (I eat lots of spinach) so have my TheiCal mid afternoon and late evening.
Wonderful guide for newly-diagnosed. Kind, detailed and realistic!
Which is just what I need right now😊
That's such a good post! I've been on this journey for a couple of weeks now and wish I'd known all that. It's TRUE! I thought I could still push my body but ended up injuring it!
I still push my body 18mths in even when I know I shouldn’t, I guess there is no cure for stupid. Just learn from the sensible ones on here and have a more comfortable journey. I just hope YBB does not see this post. lol.
Hi artisam - just letting you know everyone seems to be different and how you react to pred won’t be the same as other people. I am on 15mg now and have been see-sawing up and down for over a year. I had an inflammation marker when I got my first blood test then it went away and the doctor decided it wasn’t PMR. I knew it was and got hold of pred - miracle cure! That persuaded the doctor and she prescribed pred for me. I get no side effects at all from pred and now going to start a seriously slow taper. Don’t let anyone try to make you come down too fast - I had a disastrous flare up 2 months ago doing that. Good luck - I hope you feel so much better soon.
Thank you for that, I'm not very good at arguing with doctors, but when I did I got a diagnosis. Guess I need to be brave about that too. Good advice thanks.
Hello & Welcome Artisam - Yes BIG virtual hug for you! You have already discovered how helpful and supportive this forum can be - you've just made over 1,000 new friends!
Almost none of us wanted to be on pred when we were first diagnosed. My GP very calmly told me when I said I wasn't going to take steroids that if I wanted to possibly go blind with GCA that was up to me. Then she showed me the Red Flag against PMR on her computer. I climbed down from my high horse....!
I wish I had cut carbs from the first as now I have gained heaps of weight which is making me unhappy but the pred gives me an insatiable appetite especially for sweet things (I had that before anyway but managed to keep it under control). As it was, I told myself I was going to gain weight anyway so why not go for it? Bad idea!!!
So, now, I am attempting to bring some discipline in the door and at least not gain anymore. I am finding Tai Chi, gentle aqua aerobics and cycling, lovely exercises to keep me a bit loose and flexible.
Good luck and don't be afraid to ask. There is no such thing as a silly question. We're all here for you.
Thank you. Luckily I am already a low carb girl, so I'm really hoping weight gain won't be too bad. I'd cycle if I could get my leg over the cross bar!!! Hopefully I will be able to do that soon and get on the floor to do my pilates. Thank you for your reply ( and the hug) I am feeling a little braver.🙂
Welcome, don’t be scared, the Prednisolone usually kicks in within a few days, so when it does please take it easy it is tempting to do too much because the pain has gone, trouble is the inflammation hasn’t. Good-Grief gave good all round information. Joining the Forum we are all different by the sounds of it pain-wise, and you will get the support you are looking for from this Hub. Love Dorset Lady’s last reply. There are a lot of us around to help each other.
Hi DorsetGirl 👋
I'm confused. I thought Pred mops up inflammation not just pain relief?🤔
I've been overwhelmed with the responses. I will be sticking around. Thank you.
I hope it goes well for you, and life gets more comfortable at least. Sending a hug.
Hi there,
big hugs🤗
I'm also very new to all this and fully understand how scared you are, I feel exactly the same. Finding this forum has been hugely helpful. Everyone is so supportive and knowledgeable . I started 15mg Pred 3 weeks ago and after 3 days felt like a new woman. All the stiffness, aches and pains disappeared. I've been exercising again and living my life but not without constantly worrying about the potential side effects of steroids. To be honest,
I have experienced some minor problems with insomnia, night sweats /hot flushes.
I'm on my 3rd day of tapering to 12.5mg and have a little stiffness.
I wish you the very best of luck with your journey back to health and will be very interested to hear how your gettting on.
Thank you so much. Anxiety is getting the better of me at the mo, but that will pass soon. Just got through menopause - sounds like more of the same😟!
Nearly the same as me. I'm nearly 3 weeks into it and I feel just the same. I've got a blood test and a doctor chat next week and am scared about it all! Let me/us know how you feel on the reduction
I certainly will do Blossom 20. Today is a good day 3 mile walk and general housework. Who'd have thought mopping the kitchen floor would suddenly become a major achievement 🤣
I'd be very interested to hear how your chat with GP goes particularly regarding the additional meds we're recommended eg. AA, Omeprazole or similar and Calcium D3
Best of luck with your journey.
Hi, I was diagnosed with PMR in February after my doctor referred me to see a rheumatologist. Horrible pains in shoulders, arms and neck. I was put on 15mg of Pred and I saw a massive difference with about 3 days, I would say 90% of the pain has gone. For me the side effects of being on steroids has been horrendous if I’m being honest. I feel like my body is on fire with hot sweats, coming and going about every hour or so, the nights are even worse, in the shower about 3 times a day. I’ve had awful depression and anxiety, I’ve felt like driving off a cliff several times. Things are getting better now I’m tapering down, been reducing by 1mg every 3 weeks, anxiety isn’t quite as bad and longer spaces between hot sweats. I spoke to my rheumatologist about it and he said it effects everyone differently, it’s like putting jet fuel in a petrol engine. I think if I had know how bad my side effects had been I really would have to think hard if I would have begun taking them, but I’m not sure there was another option. I’m hoping by November I might be completely off them, I’m desperate for a full nights sleep. I know everyone has a different experience and I hope I’ve not put you off, but I had to be completely honest, I hope your journey is better.
Thank you for being honest I do hope you will be over the worst soon. I think my anxiety comes from not knowing - once the treatment starts I will know what I am dealing with. Wishing you well.
I have been on prednisone for two years to treat PMR and GCA. What you are describing as side effects sound more like chronic nutritional deficiencies. Most people do not realize that every drug we take increases the body's need for vitamins and minerals. Would be glad to discuss some suggestions if you message back.
Would love to hear advice you can give me, I have under active thyroid, hashimotos and PMR, blood tests recently for lupus, awaiting results. Can you private message me if you don’t mind
Be careful with supplements, vitamins and such. Some can interact with or conflict with medications in unanticipated ways, including blocking or intensifying the actions of other substances. (For instance, some Chinese substances include steroids.)
Seek help and advice from your doctor and pharmacist, and keep them informed of your intake and dosages. Natural =/= harmless. Non=pharmaceutical =/= harmless.
Sounds like you're doing a very fast reduction there, 1mg every 3 weeks. Remember the wise advice that is mentioned every day on here, reduce too soon or too quickly and the PMR flares up and you're back where you started. As PMRPro says, don't aim to 'be off Pred by November', aim for the lowest dose that you still feel better on. Think of what's best for now, to keep inflammation under control. None of us want to be on Pred, but without it the oncontrolled inflammation will onl wreak havoc. Be kind and gentle with your body and mind instead of trying to rush it, that's how it works. Read up on people's experiences on here, it'll help you figure it all out. All the best
Hello, this is a great location, I only found it recently. When I asked a question recently I received really good and supportive advice. I am in the middle of increasing my pred dosage as I try to find the point where the symptoms go. However over the 4 or 5 years that I have taken pred the only side effect that I noticed was that my hair became Fuller, a little bit wiry and curly. I actually quite liked it! The one thing I would say is that I had been quite an active walker before diagnosis. The pred enabled me carry on, I don't do so much but I try to do some regularly. So my message is to not worry too much about the pred and to come here often.
That sounds like great advice. I too love to walk and am really missing it. My dog especially is looking forward to an improvement in my mobility. I'm hoping my eyebrows will return too, which have mysteriously fallen out!
Thank you for replying, support here is just wonderful.
My bloods weren't as high a marker as expected but GP put me onto prednisalone to see if it helped, what a difference in 24 hours. After months of pain it was like a miracle and 6 months on I've luckily been pain free while gradually tapering off. Yes steroids do have side effects, but on balance life is worth living again and I try to manage what side effects I can such as following a low carb diet to try to keep my weight under control. This platform has been so helpful and supportive, especially when scared after diagnosis. Best of luck with your PMR journey.
Thank you so much. Anxiety is high but knowing how many people cope with this is making me feel so much better.
Hello artisam, it’s normal to feel scared , I was the same at the beginning. This forum will try to help as much as possible so do ask your questions. Here’s a big virtual hug for you🌸🌸
Ooh that was nice, thank you.😊
Hi artisam, welcome to the forum. This is a fantastic source of support, knowledge and kindness which will make you feel optimistic about humans in general.
I have been on steroids since December 2019 (started on 15mg), currently on 6mg. My journey would have been a lot more anxious without all the information I was able to gather from our fellow PRM and GCA sufferers.
I have been very sensible about diet, sleep, exercise and stress management from the very beginning and it did not take very long to start the treatment, which was very fortunate. Remember that the inflammation is causing damage to your body, it's not just about the symptoms, and you want to be alert about the possible threat of GCA.
The steroids did not interfere with my sleep, I did not feel more hungry or gain weight, my hair did not change or start falling out more than usual, the night sweats were a symptom of PMR and now are mostly gone. I have had a few emotional outbursts, and I find that my tolerance for stress is reduced, but the awareness of it makes it manageable. My rheumatologist keeps a close eye on my blood results, every 2 months at the moment (it used to be more frequent before the pandemic), I had a Dexa scan before I started the steroids to establish the baseline for the state of my bones and while I did not have any eye tests so far, I am having my eye pressure checked regularly (every 3 months). Knowing that possible side effects can be identified and treated keeps me calm and happy. When you are in your early 50s, it is difficult to distinguish between symptoms of PMR, Prednisolone and menopause.
I am careful with exercise and make sure I rest if I feel my muscles are sore.
I have read the recommended book by Kate Gilbert, I follow this forum and I try to pay attention to how I am feeling every day. If I feel worried and anxious, someone on this forum always responds to my questions and I can move forward again.
I wish you all best and an easy ride. As is often the case in life, some of the most challenging experiences have the capacity to teach us the most.
What a lovely reply, thank you. I too am conscious of diet and well being and always have been I think this is why it has hit me so hard. I am becoming increasingly aware however, at what a source of calm this forum is and I thank you for it. I'm sure you will hearing more of me and my journey.😊
Get one thought out of your mind. There is nothing you did or did not do that induced PMR.
Welcome to this knowledgeable group. I hope that you feel better soon. I remember when I was first diagnosed with PMR. It was a unbelievable to me that someone such a myself, so active and healthy could get so sick so quickly. Confusing symptoms, and as a nurse for many years how could this be ? The one thing I learned as soon as I found this great group of people was that it is not a race. Once I learned to rest.. watch foods.. rest .. and not to over exert in all ways .. I settled in . I could then taper very slowly .. still on Pred.. but Im thankful for it!!! after 2 plus years now I still cope every day. I gain support and calmness from this group. You will be ok. Feel better soon.!
Go with the flow you need the steroids to control your inflamation.
You may or may not have side effects.
If you do ask your Dr what you can do about them. They will diminish as you taper down when your inflammation is under control.
In the meantime, try to stay calm and take eCh day as it comes.
Keep in touch with others through this marvellous site.
Big hugs from me - I know how you must be feeling. All the very best. Xx
Thank you so much. Overwhelmed with the good wishes and offers of support. 😊
Welcome! You are in good company. I’ve had PMR for just over 2 years and only experience a few, manageable side effects (night sweats, bruising skin, thinning hair). Pred has helped me immensely as I was rendered almost bed-ridden after 6 months without a diagnosis.
Beyond the physical impacts, being diagnosed with an autoimmune condition impacts us emotionally/psychologically. I went through all the classic stages of grief (denial, anger, bargaining) before accepting my PMR. I knew it was going to be a journey of years, not weeks, and I had no control over aspects of my condition.
What I could control was my diet, physical activity, who I got support from, when I rested, etc. So I made some lifestyle changes and actually am in better physical condition than when I was diagnosed.
Remember, you are the expert in your own body, and you will learn to listen to your body/symptoms, and make necessary adjustments. I keep hope some year this condition will burn itself out.
Take good care and ask us anything...we “get it” in ways most folks don’t.
Just hang on in there until your prescription comes. If it's pred and you do have PMR you will feel so much better, pretty quickly.
Artisam, Preds side effects are not nice, but if your pain is bad enough there is no question you will take Pred. Learn to listen to your body, do not yet the inflammation get a head of you, pain is a side of the inflammation. Learn to eat a diet that does not cause you more inflammation, sugar is the worse culprit. Try to stay active, positive and smile, smiling helps. Good luck on the rest of your PMR journey, here is a smile for you.🙂
Artisam, welcome. PMRpro and the other ambassadors/moderators are wonderful and have so much knowledge of the two conditions. I was diagnosed only 2 months ago and started on 15gms of Prednisolone. I am now down to 10 and luckily I have so far had no effects except for waking up an hour before I used to in my pre steroid days. I put myself on a low carb diet back in January as I was diagnosed with pre diabetes and this has obviously helped to control my weight since I have been on steroids. I am currently very much at peace with the condition knowing I can call on such a wonderful knowledgeable group that we have on this site. So don't worry, quality help is available from this amazing group, you will never be alone, best wishes, hope all goes well, Gunflash.
No no. You’ve done the right thing and well done for pushing. I was the same and my blood revealed very low inflammatory markers. But my body told me and the (2nd opinion) rheumatologist gave me a weeks worth of 15mg per day to ‘prove the diagnosis’..
Bingo! I was doing backflips after 12 hours and that proved the diagnosis. If you haven’t got PMR then the steroids won’t be effective so what have you got to lose?
I’m now tapering and hope I will lose it over the next 18 months; I’ve been battling symptoms for 8 months.
Well done.
Well here we go then! Thank you for that - won't aim for back flips though!😊
With mine they redid yhe blood test to get the result and confirmed. Just keep moving and stretching and reduce yr dosage very slowly. You will be fine just take deep breath and yr not alone.
😊😊
Thank you,I am beginning to realise that.😊
Hi Artisam,
Not sure i can add much to all the great info here...
Im a year in, coping much better, slowly reducing my pred dose. Very little problem with side effects, but it did take me a while to get my head round the fact that while i felt much better, PMR was still there and I have to pace myself, rest more, not fight it but go with it . Lockdown helped me finally realise how much i needed to adjust ! Silver linings eh?!
Dont expect a smooth journey...its not an exact science, reducing pred seems to be a fair bit of trial and error, finding out when youre ready for a lower dose, or not.... But once you have seen how quickly it kicks in you have the confidence that youll be able to get on top of any return of symptoms pretty quickly.
Im so glad this didnt happen to me before pred existed.. ..doesn't bear thinking about!!
So....big hug, fingers crossed your diagnosis it spot on and keep using this site!
My thoughts on this are you can put 5 doctors and 5 rheumies in a room and each one will have a different version and outlook on PMR. The advice and info on here is second to none and has helped me through my 6 year up and down journey with PMR. As for Pred, it's never really affected me apart from in a positive way. Now down to 3mg / day after a couple of spikes and it keeps me going. You'll be okay.
Welcome! I was 56 when diagnosed 4 years ago. It’s been a rocky road for me but one thing I did learn in the first six months was not to follow my GPS advice on tapering. I did, then ended up with a huge flare and back where I started. He now admits that his knowledge of PMR has improved dramatically especially as I was not his typical patient for PMR. I was apparently too young but at least that has all changed.
Learned everything from this wonderful forum. You gradually work out for yourself how you respond to the drugs. I had a bit of a moon face at first year but no weight gain, exhaustion etc.
I sometimes wonder if us younger ones have a rockier road but I have no evidence of this.
I’m not as good as many on here about being ‘accepting’ of my condition probably as I keep getting told how well I look! 😁
Take care, taper slowly and be your own advocate. At least my rheumatologist now asks me if I agree with her recommendations.
I think we younger patients do have a rocky road but they aren't all the same surfaces!!! Mine isn't too bad when I'm on enough pred but I cannot reduce the dose - it just goes on and on.
But young at 56? That GP has led a very sheltered life ...
Hello all. I'm new to this too,abd I've never joined in a forum for anything before! Went to the Dr 6 years ago aged 45, with PMR symptoms and an ESR of 58, and after several appts, was told it could be something or nothing and "Maybe go and try some yoga!" 😡 6 years later with symptoms on and off, it all came back with a vengeance, and I'm sure I don't need to describe my symptoms to anyone here! Different Dr put me on 20mg of pred. I felt a difference within 2 hours, and 48 hours later, my hubby said "Err, did you just run up the stairs?!!!" Unfortunately, two weeks later I was told to reduce the pred down to 15mg and you can probably imagine what happened next. Then another reluctant Dr put me back up to 17.5mg (incase you haven't noticed yet, I am a bit of a waffler 😂) Ten days in and I have just spent 2 days on the sofa with cushions folded up to support my arms and head, and last night I was in bed asleep at 6.30pm. Horrendous. I find it all so frustrating as I am a "Right, just get on with it" kind of person 🙄 Anyway, armed with lots of info from this forum, a lovely Dr today said she would take me under her wing and get me sorted, and in future to only ask for appts with her. She put me back up to 20mg and said we won't even contemplate a drop for at least 4 weeks, and then only a small drop. I felt like a desperate druggy happily popping extra 5mgs into my weekly pill box this morning and almost giggled out loud like a naughty child 😂😂😂 So I wanted to thank everyone here for all the information and kindness they provide to us strangers. Onwards and upwards, and Artisam, I can't wait to hear how you get on with your pred 👍
"I am a "Right, just get on with it" kind of person"
So was I - and that was the only way I also survived the 5 years without pred. Time for a steep learning curve 
Where are all these sensible and informed doctors appearing from? At least there have been more good reports than bad ones this week!
Absolutely. My new rheumy is phoning me everyday to see how I am. I could cry after how horrid the last one was
I like to think it's everything the Charity including this forum and all the wonderful people involved doing their bit to spread the word. If people go away from here more knowledgeable to treat their conditions and the results speak for themselves then that should influence doctors. Also the good doctors like Drs Dasgupta and Mackie and others then spread to word to other doctors. I was likening the positive developments that have happened in the last decade to Kotter's theory of Change management the other day which is something I used to teach. Fascinating what can happen when a few people with a will to change decide to act.
Well first day yesterday and I slept right through the night for the first time in - well I can't remember when.
Bit of a set back this afternoon when I was taken down with stomach cramps and diarrhea. Hope it's just a coincidence as the dog had the same yesterday and I cleaned it up (eurch!) Feeling fine now and I have to say the pain is drastically reduced. Let's see what the morrow brings🤞
I find it so hard to ask for help with things as I'm usually the one who does the helping, and it's hard to give into things when you are normally good at keeping things under control. But I am listening to my body and am learning to not feel guilty about having plenty of rest etc. I know a fair bit about the side effects of pred as my Mum has RA and was reduced from a dose of 60mg to zero in a week, by a Dr who was worried about what the consultant would say about her being on such a high does. Needless to say, she ended up in hospital with an ESR of 105!
Golly - where did he learn his medicine!!!! Wants to try it himself!
But you will find a lot of us were the same as you ...
It was 30 years ago, but still.......
Yes, sleep makes a world of difference, and yes, hope it's just a tummy bug. I'm happy to suffer a couple of little side effects here and there as they are far outweighed by the benefits of pred x
Just a lot scared 
Unknown Diagnosis 
Scared stiff 
I'm scared
Bloodwork results scared me,!
