PMR AT AGE 38

[Belle10]

Hi very new too this and have never posted before. I'm 38 and have just been diagnosed with PMR and I am on 15mg of prednisolone daily. Having a very hard time coming to terms with this at my age has anybody got any good advise?

[PMRpro Ambassador]

Hi Belle and welcome! Sorry to hear someone so young has joined us!

If it really is PMR you have then kudos to your doctor for admitting it as a possibility at your age! Often they try to tell anyone under 60 they can't possibly have it as it's only found in over 70s - which is tosh of course but there aren't many under 50 on the forums but there are increasing numbers of people in their 40s. I've always said they are there - but usually fobbed of as having fibromyalgia, depression or ME/CFS.

Advice? Learn what your limits are and stick to them. Your body is intolerant of acute exercise but you will be able to increase the amount you do if you increase the amount very slowly. Try to avoid the repetitive or sustained actions that will increase the muscle pain. Wherever possible get someone else to do those sort of things - it will leave you far more energy to do other things. Do things in small bites - 10 mins doing something, at least 5 min rest, rinse and repeat. If the fatigue is a big factor then plan a rest in the afternoon - you will get far more out of the evening and the day as a whole if you do. Use "aids" - like ready prepared/frozen veggies and easy ways of doing things. And don't rush around doing all you haven't done since you've been ill just because you feel better on pred! It'll turn round and bite you and despite pred you can have as much pain as you did without!

This link

patient.info/forums/discuss...

takes you to a thread on another forum, also for PMR/GCA, and the first post in this thread has links to a whole range of sites where you will find information, advice and other friends with PMR/GCA. I've put it in here not because it is better than this forum but because there we have all our info links in one place thanks to the moderator and it makes life simpler not having to write them out over and over. It is also a good forum. The northeast PMRGCAUK support site in particular has a lot of articles by patients about their experiences as well as medical info links.

When you've done your homework come and ask any specific questions you may have - that's easier to answer than to try to tell you all in a post like this.

[babssara in reply to PMRpro]

Absolutely brilliant tips and advice as usual. I learned a lot from this. Thanks PMRpro x

[Rose54]

Hi Bella

Its a long road I have been on 15 Preds for 5 weeks and thought I was going mad so many strange side effects from Preds so scary . I could not even cross the road without feeling scared so much so I requested a Mental Health Assessment as I thought I was going crazy .No one tells you all the things that could happen, I am breathless all the time and feel a lot older than my 61 years. Please follow all information on site re resting and taking things easy. I have had 12 weeks off work and was informed yesterday I will not be fit to return for at least 6 weeks that was a GPs opinion I know in reality I may never return to full time work . Try to stay positive we are all on the journey together and you are not alone .

Best Wishes

Rose

[piglette]

Belle, I am do sorry you have got PMR. I do hope that the steroids worked like a miracle on the pain for you.

[DorsetLady PMRGCAuk volunteer]

Hi Belle,

Welcome to forum.

You don't say, but from your age I guess you are at work. If so, them you need to get them involved in your problem, because it's not going to go away any time soon. Although you will feel much better now you are on Pred, that brings its own problems for many.

Once you've had a good read through the info PMRPro has advised, if you are at work, set up a meeting with the following, not necessarily at the same time. Union rep, if you are in one, if not them consider joining if you can. They do sometimes get a bad press, but they are very useful if you are likely to be off work, or you cannot perform as you did before. Also need to speak to workmates, as well as managers, they can all assist you. Also HR and OH. It all sounds a bit daunting, but you need as much help as you can from all those around, most of whom will never heard of PMR. That means friends, family and work colleagues.

Good advice from PMRPro, and as she says please ask any questions no matter how trivial they may seem. Most of us on this site acre still going through PMR GCA, some have luckily got over it, but we all know what you are going through, and how difficult it can be.

[babssara in reply to DorsetLady]

Brilliant advice Dorsetlady x

[Belle10]

Thanks so much to those who have replied.

Thankfully I don't work, I have two kids one at 17 and the other is 11, so they are able to help about the house.

Been on the pred for about 6 weeks now and some of the side effects are weird, feeling tired but can't sleep and if I moved the sweat pours off me, does anybody else have this problem?

[Celtic PMRGCAuk volunteer in reply to Belle10]

Belle, I've just replied to your earlier post below but have now seen your latest post, about difficulty sleeping and the hot flushes.

With regard to lack of sleep, that will improve as you reduce the dose - meanwhile it can help if you take your Prednisolone as early as possible in the day.

The sweating is due to the inflammation and can also be a side effect of the steroids. It can help if you avoid all caffeine - I gave up coffee and switched my tea to decaf. I also gave up wine as just one glass would immediately bring on a sweat. Herbs and spices can do the same.

Both these problems will improve as you get to the lower doses of Pred.

[PMRpro Ambassador in reply to Celtic]

Funny isn't it - I rarely drink coffee, when I do it is proper Italian/Austrian stuff and I do drink wine. Neither makes me feel even glow-ish. On occasions a cup of tea will do it but not always!

And I'm at 4mg ...

[Celtic PMRGCAuk volunteer in reply to PMRpro]

I could never even have a lunchtime glass of wine with a work colleague without my rosy cheeks giving the game away on return to the office!

Here's to you being en route to 3.5 soon then!

[PMRpro Ambassador in reply to Celtic]

Fie, fie and thrice fie! That will have been the guilt factor! Should have moved to Italy where a small glass for second breakfast at about 9am is normal...

[Celtic PMRGCAuk volunteer in reply to PMRpro]

Shame you don't eat breakfast then!!

[PMRpro Ambassador in reply to Celtic]

Probably just as well!!!!!!!

[Derug in reply to Belle10]

Hi belle I am 43 been on peds for eight weeks, was on 30 then reduced to 20 as couldn't cope with the side affects I have tremble hot sweats when I try to do anything, my doctor suggested I took them at night rather than in the morning it works better for me, hope this helps.

[Celtic PMRGCAuk volunteer]

Hello Belle, I'm so sorry to hear that you have been diagnosed with PMR, and at such a young age as well.

Hopefully, now that you are on Prednisolone, your pain will have significantly improved in a very short time - at least by around 70%.

If you were diagnosed following blood tests (ESR and CRP) that showed raised markers of inflammation, then do be sure to get those tests repeated to ensure that the levels have returned to normal along with an improvement in your symptoms before any reduction in dose.

If you haven't been given a Vit D blood test, then do ask for one as any deficiency can lead to pain in similar areas to those of PMR.

Do ask away if you have any questions as there will always be someone around to advise you following their experience with either PMR or the linked condition, GCA, or both.

Meanwhile, you will find lots of helpful information in Kate Gilbert's book 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide, which is available either direct from Amazon or from our Charity, PMRGCAuk, pmrgcauk.com. All royalties from the sale are donated to the Charity. You will also find lots of helpful information on the website, including the whereabouts of support groups around the country - there might just be one in your area, so do have a look.

Having had both PMR and GCA, I, and others, do understand exactly how difficult it is to come to terms with this illness, but once we get our heads around it, and give it the respect it needs with regard to resting, pacing ourselves and generally looking after ourselves with regard to diet etc, we do at least find that we get some control back over our lives. You will get better, I promise.

[babssara in reply to Celtic]

I am going to purchase Kate Gilbert's book, from the organisation site o course. Happy reading for me !!!!!

[olive2709]

Some tips on clothing that help sweats . M&S do a 100% cotton bra come in packs of two , cotton nicks same place . If you can have cotton next to skin is much more comfy ..

Get the kids to read all info you get it will help them understand my granddaughter (13) has read it all and tells me off in fact she comes over andhelps with baking her brother (8) helps change beds every week. You need all family and friends to understand

Keep you sence of humour you will need it

Here is a four letter work that is not to be used when asked how you are FINE it means

F = Fed up or any other f word

I = Inscure

N =Neurotic

E =Emotional

Be kind to yourself Olive

[judam9]

i was going to try prednisone, 3mg. because it would have been much cheaper then the generic of entocort 3mg. bednesone. and that was expensive also, but after reading these many remarks of prednisone , thought it would be a good idea to stay away from it. maybe it would work for you , but i did use it for a month, and things were just not right.