Information please

[PMRNewcomer]

Does Prednisone take all the pain away or does it just relieve symptoms?

[SnazzyD]

Hello and welcome. What symptoms do you mean that aren’t pain? The Pred suppresses the inflammation caused by the autoimmune activity where the body it attacking its own arteries in certain places. So it doesn’t cure the condition but the lowered inflammation stops the pain in the muscles that aren’t getting enough oxygen from the inflamed arteries. It would help if you put some detail in your profile about your diagnosis, dosages and symptoms.

[PMRNewcomer in reply to SnazzyD]

Hi thank you for your response. What I meant to say is the medication (15mgs) supposed to take all pains away or just reduce it to an acceptable/liveable level. I have been put on a trial for a week to see if it is PMR because blood tests are all showing clear. My symptoms are exactly as described for PMR.

[PMRpro Ambassador in reply to PMRNewcomer]

That depends - you need enough to achieve the best result and 15mg is often not enough. There should be a 70% improvement in symptoms within a week or so and with luck you will get better than that. Either you have to be patient and wait or you need a bit more to start. If your blood markers are raised then they should be checked until they are falling to normal levels before thinking of reducing the dose. Or the symptoms should have improved significantly and not be getting any more better by the time you start to reduce. I got a lot of relief within hours but it was probably a few months before they had improved as much as they were going to. That was especially so for bursitis type pain - the muscle soreness and stiffness improved quickly.

[PMRNewcomer in reply to PMRpro]

That’s exactly what happened for me. Within hours I felt like a new person and I had a great nights sleep. In the morning (today) I felt a but stiffer than yesterday but the symptoms eased during the day in would say I am about 70% better than I was yesterday morning before my first dose. Thank you so much for your help.

[PMRpro Ambassador in reply to PMRNewcomer]

Did you DO more because you felt better? The pred is only reducing the inflammation, it has no effect on the actual disease process which continues attacking body tissues, leaving muscles intolerant of acute exercise, you are more likely to develop delayed onset muscle soreness, even with activities you wouldn't expect to, and it takes time for that to resolve, longer than usual too

[PMRNewcomer in reply to PMRpro]

No I didn’t do more, it just allowed me to do what I normally do with more ease. Is it advisable not to do too much exercise?

[PMRpro Ambassador in reply to PMRNewcomer]

Exercise is OK - providing you keep within the limits you establish are what you can cope with. Overdo it and you will spend several days (if you are lucky) or even weeks (if you are not) recovering. It is very common for people to feel so good on the pred that they try to catch up with what they haven't been able to do for a while - and sometimes it is just too much. You have to get into training - start with a small amount and assess the next day how it was. Too much, do a bit less, OK and you can do a few minutes more the next time. But it really is minutes - but even adding 2 minutes per day until you feel it can increase what you do a lot within a few weeks.

[PMRNewcomer in reply to PMRpro]

Thank you

[PMRpro Ambassador]

Prednisone relieves the inflammation in PMR and GCA - and it is the inflammation that causes the symptoms. It doesn't do anything to the actual underlying cause of the inflammation which is an autoimmune disorder that makes the immune system go wrong so that it attacks the body tissues because it can no longer recognise the body as self.

[Blearyeyed]

As with your other replies I will repeat that the Steroids are the most effective treatment to manage your PMR symptoms , pain and inflammation but it isn't a cure.

You do also need to make adjustments in your daily activity and balance your activity with more short rests and reduce activities that aggravate your pain to help stop your routine triggering more inflamnation.

The original dose may not remove all of your pain within the first week , especially if you have other health issues as well or have suffered with moderate/ severe symptoms for some time , but it should have made a substantial difference to the pain and stiffness you were having .

Welcome to the group , keep asking questions , we are always here to help you through.

[PMRNewcomer in reply to Blearyeyed]

Thanks a million to all responders. It is a scary journey for me and I need to know I am not alone. Thank you

[Hidden in reply to PMRNewcomer]

You can ask questions and read existing posts... Anytime.

[PMRpro Ambassador in reply to PMRNewcomer]

You are certainly not alone - there have been over 10 thousand people who felt a need to join this forum over the past years - 400 of them since xmas 2019 alone!

[Longtimer in reply to PMRpro]

Yes, I have noticed a lot of newbies since xmas, are people more aware of the forum now?....hope it`s not because more people now have PMR....

[Hidden in reply to Longtimer]

I suspect it comes up higher on Google search the more people use it.

[Longtimer in reply to Hidden]

Ok.....we should first and foremost on Google!......😉

[Yellowbluebell in reply to Longtimer]

We were mentioned in an american journal which gave us quite a few new members from there. YBB

[Pixix]

Hello! I was only diagnosed in November, so am a newbie! Just post your concerns here as there is an abundance of really great people who know so much about PMR & CGA (& are really friendly)! My levels weren’t raised as much as some, but my diagnosis was “classic”, Dr said. 15mg of pred was insufficient to take away all my pain, therefore, after the ‘miracle’ of the 70% improvement was over & I cared about the 30% I still had, my pred was increased...only to 16mg, but 1mg can make all the difference! Read posts & learn on this forum, that’s my advice...now it’s February, & I’m down to 13mg (but gradually over the course of a month). I have a telephone discussion with my dr each month (to avoid the bugs in the surgery) & feel no need to see a rheumatologist, but you may wish to. Some of us also have Fibromyalgia...I also have osteoarthritis, other results of a long ago car crash, lung issues plus a tumour (benign) on my spine! I was diagnosed with diabetes, too, & you will see that mentioned a bit, & I’m on a very low carb diet, too (as are others). It’s all scary to start with, and I have a lot to learn. For me, ‘rest’ is a four letter word, & I’m a truly dreadful & rebellious patient. Good luck, take care...& rest (LOL), S x

[PMRNewcomer in reply to Pixix]

Thank you so much for replying to me. You do seem to have mega problems sweetheart but you seem so upbeat as well. I will take your attitude to this illness and try my hardest not to be a cry baby. Xx

[Pixix in reply to PMRNewcomer]

I hope my rambling helped a bit! The only thing to do is remain optimistic, I reckon. I don’t manage to be upbeat all the time, though....have my moments, bad days etc. But I’d already taken early retirement upon redundancy & my husband is retired, too, so things are a little easier than if I still worked (covering all of Europe as Director of Marketing Communications for a pharma company. Used to work very long hours!) I think we all cry! Little things that I would normally just stroll through do floor me! Our washing machine died & I spent 3 hours mopping up water, wringing out clothes, & a combination of tiredness & pain reduced me to tears! I get an average of 4 hours sleep a night & find that tough on a regular basis...but I asked my dr for help & I take a sleeping tablet once a week maximum (my choice, don’t want to get dependent) & that helps! Good luck, look forward to hearing how you get on. Hugs, gentle ones, S x

[PMRNewcomer in reply to Pixix]

Hugs right back to you too. My husband is a bit younger than me and so he isn’t retired yet. The other thing as well is, we moved house in early December and the amount of remedial work we have discovered which needs to done is awful. I guess that’s not helped either. Please stay in touch and we can compare notes. P x

[Meggsy]

Welcome! What time do you take your pred. At first I took mine with breakfast and pain and stiffness did not go till 2-3 hours later. Then I started taking it at 4am and pain was gone when I next woke. The substances which cause the inflammation are released in the body at 4am. ATB 🌻

[Pixix in reply to Meggsy]

Take mine at 3am with two Ritz crackers...but reduced to one Ritz cracker last week as on low carb diet! No problem with my stomach but I am taking lansoprozole to help (omeprazole, which I took for another existing condition, didn’t help & I had a lot of stomach pains). S x

[PMRNewcomer in reply to Pixix]

I already take Lanzopralole for acid reflux but my doctor has told me to double my dose. I also take heart medications because I had a heart attack two and a half years ago. I must admit though, I am scared to death of the side effects of the steroids, the information sheet reads like a Stephen King horror book. Do you set your alarm clock for three o’clock? P x

[PMRpro Ambassador in reply to PMRNewcomer]

No-one gets all the adverse effects - some have none, or next to none. And many can be managed when you know how - weight gain tops the list: cut your carbs ...

[PMRNewcomer in reply to PMRpro]

I will but what do I fill up on instead of potatoes and bread please?

[PMRpro Ambassador in reply to PMRNewcomer]

Lots of above ground veg, protein and fat isn't restricted. There are a lot of threads on the forum about eating low carb.

[Hidden in reply to PMRNewcomer]

People eat cucumber but I like celery with full fat soft cheese.. If your carbs are low enough you can increase fat without issue. The cheese will keep you feeling full. If you need potatoes, get new ones cook them one day, then rewarm the next day. Here's some low carb info.....

dietdoctor.com/low-carb

ditchthecarbs.com/guide-to-...

bbc.co.uk/programmes/articl...

[Pixix in reply to PMRNewcomer]

I had to take a lot of steroids a few years ago, for lung problems. I put on 2 stone. I said ‘never again’, & refused to take them unless the choice was ‘steroids or hospital’! Another stone in weight piled on, & no diet removed them. So when diagnosed with PMR I was horrified to learn that pred is the one key treatment!! So now I’m cutting my carbs as much as possible. I’m hungry all the time! I quite understand your thoughts, but as PMRPro says you may not get any of the side effects! Needs must, though, so fingers crossed & go forward, I hope you are OK. S x

[Pixix in reply to Pixix]

Sorry...no, I don’t set an alarm. Would be too unfair on my husband! My body clock got used to it within a couple of weeks...of course sometimes it’s ten or twenty minutes either side of 3am! I get a lot of pain in the night (Fibromyalgia, restless leg syndrome, injuries from my past) so not a heavy, or long, sleeper! But it did help me get up with some energy earlier in the mornings, which was giving me problems when I took the pred after I got up. S x

[PMRNewcomer in reply to Pixix]

Ok so I guess each person is different so I’ll just have to wait and see. P x

[PMRNewcomer in reply to Pixix]

Thank you x

[PMRpro Ambassador in reply to Pixix]

If you are hungry you are not eating enough protein and fat and full-feeling is due to the volume of what you eat - so you eat lots of above ground veg and salads.

[PMRNewcomer in reply to PMRpro]

Gotcha, cabbage, sprouts, broccoli cauliflower etc. Thanks that’s the best way anyone has described non carb veg 👍

[PMRpro Ambassador in reply to PMRNewcomer]

All in pictures:

dietdoctor.com/low-carb

Look at foods to eat, foods to avoid...

[PMRNewcomer in reply to PMRpro]

👍

[Pixix in reply to PMRpro]

I’ve eaten bacon, pork & cheese for protein today, plus calabrese, spinach & cabbage for veg, plus cream, butter & olive oil. I also have ingested coconut flour & eggs in a cooked ‘roll’ from a low carb recipe. Plenty of water, no alcohol. I did study nutrition at A level albeit a fair time ago, and I’ve been reading up sites since December now which confirm low carb foods to choose. I’m cooking from keto recipes only. I think, rather than ‘feeling hungry’, I should have said that I yearn for that which I cannot have...a nice piece of yesterday’s wedding cake, or homemade shortbread, & I would rather have had a jacket potato for supper!!

[PMRpro Ambassador in reply to Pixix]

I think that is the difficulty for most - the yearning. One member of the community suggests cutting your usual carbs in steps - by 25% the first few weeks, then 50% and so on. It makes the process less painful and lets your tastes adjust more slowly than going "cold turkey". And if you have the discipline, use your yearned for items in small quantities as treats.

This isn't a quick fix, it is changing your eating habits longterm which is the only successful way to lose weight and keep it off.

[PMRNewcomer in reply to PMRpro]

Ok thanks I’ll give the reduction method a go. P x

[Pixix in reply to PMRpro]

Agree. Sadly I feel the rush as I put on the stone I lost in December when on hols in January and i have my blood sugar re-test at beginning of March to see if I’m reversing the diabetes! When I’ve lost that stone again I will go slower and evolve a diet for life!

[PMRNewcomer in reply to Pixix]

Does anyone suffer with a slightly lightheaded/dizzy feeling? P x

[PMRpro Ambassador in reply to PMRNewcomer]

Probably a better idea to start a new post - few will see it here. And a bit more detail would help. Pred can cause such effects - but are these in a particular context?

[PMRNewcomer in reply to PMRpro]

Will do

[PMRNewcomer]

Hi I take mine with breakfast at about 8.00 am

[Hidden in reply to PMRNewcomer]

If you nip to the loo in the night, take them then. A bit of yoghurt or something with it will help. I always take a thyroid tablet on a toilet run... Once in the habit it sticks.

[Melti]

Hello PMRNewcomer and Pixix, I'm also a complete novice at this - I was diagnosed in January. I posted once here before I started meds, but will post an update later today. For the past month I have been addicted to this forum and have been reading all the old posts - I'm in awe of the amount of knowledge and expertise on here, and of all the support so generously given by members.

All the best, and I'll look forward to hearing about your progress.

[Pixix in reply to Melti]

Look forward to seeing your update...it’s how we all can help each other, I believe! Take care, S x

[PMRNewcomer in reply to Pixix]

You too chick x

[PMRNewcomer in reply to PMRNewcomer]

By the way sorry to be so informal, but I call everyone chick, it’s a Yorkshire thing 🙂

[Pixix]

I’m very happy with ‘chick’...it definitely makes me feel younger, & think of Spring! Thanks, S x