Hi, i was diagnosed a few weeks ago and have been on 15 mg of pred for 21 days now. The pain was excrutiating and got better to begin with but I now have started getting worse pain gradually coming back. My joints are burning hot and im very sore. I have 3 kids, 3,9,11 that keep me very busy and to be honest I struggle to do the basics at times. Mornings are the hardest as Im in pain and have restricted movement but the meds seem to kick in after lunch but I am then struggling to stay awake, often laying on the floor snoozing while my toddler watches tv, before having to pickup the older kids from school and do the ferrying to the sport activities. Are there things I could be doing to help me get through the day a little easier. Im not sleeping well at all and rarely sleep longer then 2 hrs which doesnt help my mood. I dont want to be a grumpy mum but its tough and I dont want my family to suffer as well. I am considering cutting out sugar all together and maybe even trying the paleo diet, anything that may help get me through. Im a the waiting list to see a rhuemy but that will take a while. Any suggestions on issues such as managing sleep, pain and how to better function would be greatly appreciated.
Hiya Ally, welcome to PMR and our club. I have had PMR for 11 months and started at 15mg which seemed marvelous to start with, then had to up it to 20mg and a week later up to 25mg a day before all the pain went so don't get to upset. It may be worthwhile experimenting and up the preds for a week and see how it goes, better to be without the pain and work back down slowly. All the best, Dave (tavidu)
Here are a couple of possible explanations for your continuing debilitating pain after 21 days on 15 mg of prednisone.
As Dave suggests, you may need more prednisone, especially given your demanding schedule. It took 20 mg for my symptoms to improve. The fact that your pain is increasing on the medication suggests the the dose is too low to control the PMR inflammation.
Second, you may have something else wrong, not PMR. With your young family, you may be too young for PMR to be the most likely cause. It rarely occurs in those under 50. “Rarely” does not mean “never,” so age does not rule it out, but it is worth considering.
If you have not reported your continued pain to your doctor, it may be a good idea to do so. Take care of yourself!
Thankyou thats comforting to know. I will try that and also see my GP. He spoke of the need to reduce my meds over time so was not sure what to do when the pain is worsening, i may even call him tomorrow....looking forward to the thought of painfree... Clearly this is the start of the journey...
Hi Ally71,
When I was first diagnosed about a year ago I was put on 15mg & after 6 weeks & blood tests my rheumatologist raised it to 20 for a brief time & it seemed to do the trick. Hope this helps. Didn't stay at 20 for too long & wasn't that difficult to get back down, unlike now where I am stuck at 7.5 mg.
Hi there, sorry to hear you are having these problems, there are some lovely ladies on here who are very knowledgible whom im sure will be along soon to help you, i appear to be one of the lucky ones with a Dr who lets me do what i suggest and after the initial symptoms which you still appear to be getting had nearly all disappeared like a miracle on the taking of Prednisolone although i do get more tired easily, fortunatley my children are grown up i certainly couldnt have coped with 3 young children, is there anyone who can help you, dont be afraid to ask, they might need you one day
I am lucky in that respect too. I don't understand doctors who seem to be on a power trip. The dose needed with PMR seems to be rather individual.
My doctor is great and has referred me to a Rhuemy but that will take a while to come through. I dont have family nearby and live in a regional area in Australia. There does not seem to be a huge amount of info available here but maybe I have yet to find it... Nobody seems to know much but Im hunting down as much as possible. still all new to me.. Thankyou for your help
I live in the US near San Francisco & not all that much info here either. This site is very helpful. More research done in the UK than in the US on PMR. A caring doctor whether a gp or a rheumatologist is a big advantage in the battle.
This is tough, Ally! Dealing with pain and having to take care of 3 young children.
I see that you got some helpful advise already, and I would think that an increase of 20 mg for a week or so would help that you can cope better. Cutting out sugar is important --- not easy to do, but helpful. I am trying this myself because I am pre-diabetic since taking prednisone.
Yes, my doctor is great and is researching also. The rhuemy will have more answers. I have another query, im diabetic and used to changing insulin doses to mange bsl levels. Is pred a drug that you manage yourself or is it something you do through your doctor. Reading blogs it seems people may increase and decrease themselves? Im still yet to understand how it works, probably another question for my GP but its nearly 1am here. He may get cranky if i call now hehe.
I think im going to up imy dose in morn n call doc.....also Im diabetic and should be better eqipped to manage sugar levels but im finding i have little time to think about my stuff, except online in the middle of the night when everyone is asleep. In hind sight i wish i had managed my diabetes better so pls look after yourself with that, high sugars do play havoc on your system long term...
Hi ally, you amaze me.your schedule needs you to have some sleep.Ask GP for a a sleep aid such as Ambien. When I was on 40 mg I did not sleep for days and my potassium level also dropped. Pred. Causes you to have diuresis and you also lose potassium and sugar if eating more of it and blood sugar rises. As was water goes out of you kidneys and blood sugar is high you excrete the sugar but more water is pulled out with it. You get dehydrated and more tired. The doctor should give you potassium supplements.but you can eat bananas,raisins,and other foods high in potassium.sleeping more usually makes you feel so much better. Good luck. Pat
I was quite teary when i posted tonight but you know, forums do help, thankyou to everyone who so far has responded i do feel much better..... I look forward to learning more and maybe helping others feel better too. Better get some sleep before the kids get up...... Thankyou my day tomorrow just got easier😊
Ooo thanks, i will look into this more, that may explain a few things.....
It's all a bit overwhelming at first, but evens out after awhile.
Ally, i can't imagine how you can take care of 3 children and be dealing with PMR. As others have suggested you probably need a highter dose of Pred. I am taking 4mg twice a day .... the pain is gone but the fatigue is the worse. I'm trying to manage on the 4mg. I have no children and live by myself so I can crash when ever I need to.
Hope your MD realizes that you need higher dose at least for awhile.
all the best
IF what you have really is PMR than I'm afraid what you need more than anything is REST! I do realise that's probably not an option! However - what had probably happened is you are doing more because you felt better and that just doesn't work. Your muscles are intolerant of acute exercise and don't tell you when you have done too much, they don't recover as quickly either, everything is like comparing a gentle stroll with climbing a mountain!
I have to say though that your description of burning joints doesn't fit the usual main complaint with PMR - it sounds more like a real genuine inflammatory arthritis and the onset can be similar.
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
This link takes you to links that will give you loads of info - read if you have the time and energy.
Several of us have found cutting carbs drastically helps with weight gain on pred - I eat an almost paleo diet I suppose but not as restrictive - not giving up wine for anyone! It may be - particularly since you obviously can't help management with pred that you need a higher starting dose - 15mg is the usual, but up to 20mg is also fairly usual.
The links I have given you include a couple of papers from doctors, one by Quick and Kirwan and one by Mackie and Mallen - aimed at GPs to help them manage patients with PMR alone without frequent recourse to a specialist and I'm sure your GP would welcome having them since you are in the sticks in Oz if I remember rightly - where are you?
The link I gave you has various info about reducing - yes, over time, but not until you are comfortable and you are looking at years, not weeks or months. They keep telling us that it takes 2 years - that applies to about a quarter. About a half are looking at up to about 5 years. This is a chronic illness - and the slow reduction described in the replies bit of that link have proven useful for a lot of people.
Keep asking - someone will keep answering.
You do seem very young to have PMR - I'm guessing in your early forties? Did your GP rule out other possibilities such as rheumatoid arthritis before trying you on a trial 5 day dose of steroids?
And while it's fine for those who have been in the drug for a while to control the dose to avoid flare ups I don't think it would be wise in your case before you have seen a rheumy. Because steroids will mask your symptoms and prevent a possible alternative diagnosis.
As for the tiredness I'm afraid that goes with the territory - it happens with any autoimmune disease. You need to be able to rest in the day and get a good night's sleep. Is there anyone who can help you with your children?
Hello Alli
sending big hugs
I too am a newbey and am a full time single working mum . I have had a tough 2 weeks and so feel for you . Trying to be a mum , when you are in so much pain is tough .
I started on 20 mgs and was instructed to reduce after 5 days ... I experienced a huge improvement in my symptoms within 48 hours . When I reduced to 15 my pain came back with !!!!!! 2 forward 6 back . I share your frustrations ..... My son is 12 and has had the worst Easter ever . I feel such an inadequate mum right now but keep telling myself that this can't be permanent and things will get better .
as a result of my increased symptoms I have gone back up to 20 mgs as from yesterday .... Fingers crossed
I am quite into mindfulness meditation which does help with , the pain , and sleep .
I have an appointment on Monday so am hoping for a more detailed plan forward .
hang in there
Helene