pmr
Posted , 6 users are following.
I am 47 (for another 2 months!) and have just been diagnosed with pmr. Trying to find information on this subject is really difficult so was delighted to find this site. All i am hearing is how young i am to have this - anyone else out there under 50? I have been trying to find out anything about diet - what helps or hinders, if anyone got ideas would be grateful. Does age make a difference does anyone know? Have been started on 15mg a day 10 days ago - the effect was amazing within two days. I have got the doc tomorrow so hope to get more info but real life experiences much appreciated.
0 likes, 10 replies
Mrs_G
Posted
Welcome well sort of ! as Im sure youd rather not be on here ! Under 50 is more rare but i think the youngest was in ther 20s ! If you read the stories in the sticky at the top of the forum Im on there and I was 54 with my first bout and had been very fit up to then The other sticky to take note of is the link tio PMR/GCA North East There is so much information on there to help you On the other forum there has been a lot of chat lately about diet Carbs are the things we are supposed to avoid most of all It is difficuklt as we all seem to have more time on our hands and most of us cant exercise as we used to
On the other forum linked to the north east site we have had quite a few new members lately who are in there early 50s so dont know if age is going down all the time or not Drs used to say 70s but they have brought that down now
With both my bouts of PMR I was started on 20mg and had instant relief My first bout was plain sailing but this one has been a roller coaster ! Just read as much as you can and ask whatever you want to know
There is so much info around now for us on the forums and I found another forum somewhere and found a few people who had had it before as well I was releived ! I now have another 2nd timer on here Betty so thats good for me and Im sure you will be pleased to find someone your age !
I always say to anyone new is keep records doseage bloods symptoms and then you can look back if you have problems Hope you have a good Dr I do
Best wishes
Mrs G
MrsO-UK_Surrey
Posted
We are hearing of more people being diagnosed at a younger age - some younger than you - and my friend's neighbour has a child with the linked condition, Temporal Arteritis.
Unfortunately, there is no known cause or cure at present although much research is now being carried out. Meanwhile, steroids do at least keep the inflammation under control, relieving the pain, until PMR decides to burn itself out.
Mainly, it's good to hear that you are feeling so much better since starting the 15mg dose of Prednisolone.
At the start of my illness, I researched anti-inflammatory foods and foods that can aggravate the rheumatic-type pain.
Among the anti-inflammatory foods are oily fish (mackerel, salmon, trout, sardines (the latter with bones - good for our bones which can be at risk of thinning due to steroids), beetroot, avocados, garlic, turmeric. Some people can get fluid retention from steroids and good diuretic foods include asparagus, garlic, fennel and melon.
Foods that can aggravate and are best avoided are sugar and processed meats (the latter high in salt so can contribute to fluid retention and weight gain).
Among foods to reduce are carbohydrates such as bread (can increase steroid-induced weight gain) white potatoes (can be substituted with sweet potatoes), parsnips. All these foods turn to sugar in the body and can add to the risk of steroid-induced diabetes.
The adrenal glands are suppressed by steroids and as coffee and sugar also place stress on those glands, these are best avoided or at least reduced.
You may have been prescribed a Proton Pump Inhibitor (Lansoprazole, Omeprazole) alongside the steroids to protect your stomach. There is a lot of controversy surrounding these drugs at present and, in fact, rather than protect my stomach they caused adverse side effects so I have relied on a 'live' (probiotic) yoghurt daily before taking the steroids and have remained problem-free in that area.
Has your GP given you a blue steroid card? If not they are available either from the GP or the pharmacy. You can record your up-to-date dosages on the card and you should keep it with you at all times.
One extra little tip: it would be wise not to overdo things just because you feel so much better on the starting dose as the steroids are just masking the pain and you need to give your body time for the inflammation to really get under control.
Hope at least a bit of this helps, Scottie, and here's to a smooth journey to recovery. :ok:
MrsO
mrs_k
Posted
You have been referred to the 'sticky' for the North East Website.
On that site you will find, under support groups, PMR GCA Scotland - a Scottish Charity. This is run by Mrs J Miller. I don't know your exact location but it is worth contacting PMR GCA Scotland.
Failing that, on this site on the Home Page, there are a list of support groups and the Scottish Support Group is listed.
And, no, we know people as young as 26 so you are not so to young.
scottie
Posted
Early days for me but a real boost having people to get in touch with so once again my thanks to all who contribute to this and make things not so scarey...
MrsO-UK_Surrey
Posted
Just a little extra word of caution: a lot of people find it difficult dropping from 15 to 10mgs without the inflammation increasing and all the pain returning - trying 12.5 would be a wiser option.
MrsO
Lizzie_Ellen
Posted
Welcome (I'm afraid our welcome has a bit of a sting in the tail as we'd much prefer it if you didn't have PMR!). However, really pleased you found us. This site has been so much help both practically and emotionally for me since I was diagnosed 2 years ago. I'm with Mrs O on the suggested drop from 15mgs to 10mgs. I did 15mgs/12.5mgs/11mgs then 10mgs taking a month to make each drop to start with and it worked very well. I'd been referred to a Consultant at the hospital and she was as interested in the reduction regime as she was in the PMR itself and to be quite honest, its part and parcel of the illness. Don't be afraid to discuss all the possibilities with your Doctor regarding reducing the steroids, its your body. Find out everything you can, ask as many questions on here as you like, there's always someone who's 'been there, done that' (and probably got the t shirt :lol: ) and will be able to help. I do hope you have a very uneventful journey with PMR :magic: .
Take care
Love from Lizzie Ellen xxx
mollycoo
Posted
Incidentally, what part of the Highlands do you live in? It's my favourite part of the world and I've been many times. Just love it!!
Best wishes for your journey with PMR.
Cheers,
Molly.
fiftiesgirl
Posted
Please talk to your doc about [b:ad2ec8214e]not[/b:ad2ec8214e] doing that large drop.... 12.5mg is considered the best next step to take ....good luck :D
EileenH
Posted
This has been discussed on our forums loads - many doctors seem to think its the same as with other diseases you need steroids for but it's not. You are looking for the lowest dose that controls the symptoms and you are in for a long haul - not weeks or even months probably, 2 to 4 years is more the pattern. The drops shouldn't be more than 10% of your current dose at a time - so really even now not more than 1.5mg at a time if you could manage. There are lots of ways to do that. Ask if you want to know more!
If you go down 1mg at a time you often find you can get down better than dropping more, finding it was too much and having to go up and start again. And don't let the docs bully you into trying bigger drops or if you aren't feeling good - never mind what the bloods say, it's the symptoms that count.
I think it is being recognised more in younger people at last - it used to be claimed it was only found in older patients (over 65) but I belive many younger patients are being fobbed off or diagnosed as having ME or fibromyalgia or even rheumatoid arthritis. Only steroids will deal with the symptoms and if it is pure PMR then the RA drugs don't work - and they are assumed to be resistent to everything.
But welcome - and stick with us and the other forums! You will learn a lot from them - all advice from people who've lived with it for some time and it will all be sensible and helpful as you learn to live with it.
Eileen
dianetheartist
Posted