pmr

Hello Scottie

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

Hello Scottie and welcome from me to albeit with a condition that we'd all rather not have to have!

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

Scottie

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.

Many thanks to all who responded to my post greatly appreciated. Yes I seem to have a good doc who i saw today - he took more blood ... ( advising me to get used to this) and hopes to drop my dose to 10mg at the end of the month!! Although i guess this depends on bloods. This is good news as i find i am always starving although i am trying to eat fruit and veg and be \"good\" - i miss sticky buns and chocolate! If i am \"bad\" with a sneaky biscuit though - boy does it taste good ! I try to drink at least one glass of sparkling water before i eat anything - telling myself the bubbles take up space...

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...

Scottie

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

Hi Scottie,

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

Hi Scottie and welcome. Keep coming on to this forum, there are lots of people well experienced and knowledgeable who can give lots of useful advice. I'm almost a year into PMR and agree with the others saying 15 to 10 mg is too large a drop. I came down 1mg at a time from 15 to 9, and then half a mg down to 7 two weeks on each dose, and then even slower with great success so far. Slow but sure is my motto.

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.

Hello scottie and welcome.... would support everything which has been said.... I was originally on 15mg and dropped to 10mg after three weeks and had a horrendous resurgence of symptoms and was in a dreadful place for weeks until my doc put me up to 20mg........ since then have been coming down 1mg a month and am feeling well although do have steroid withdawal symptoms for a week or so after a drop.

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

I'll back up the \"don't drop so quickly\" advice. i was originally put on 15/10/5mg, each dose for 2 weeks and then stop. I was great at 15mg but there was some re-emergence of the symptoms as soon as I went down to 10mg - and obviously that got worse at 5. Within 24 hours of stopping I was worse than at the outset.

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

Hi Scottie---Im just 50 and Im sure its been coming on me over past 3-4 years...horrible , horrible thing to have... :cry: but we are all in it togetherr and this forum is so helpful..Ive only just joined but Im learning loads already!