Culprit- Steroids or PMR ?

Have only just read your post so maybe you will not see this reply.

Your experience exactly mirrored mine re steroids and unless I am at death's door I'll never take them again. I find the medical profession very cavalier in its attitude to precribing what has been described as \" the filthy drug \". I, too, wonder how many doctors, nurses, consultanats have ever experienced the effects they can have. They don't cure the disease and, unless you persist, no-one is ever going to enlighten you as to their detrimental effects. They are a quick way to get rid ofcomplaining patients because SOMETIMES the do have a magical effect. We should, though, be warned in advance of th downside

BettyE

I have avoided most tablets etc all of my life.

Prednisolone stands between me losing my sight or being able to see.

I wonder if you would be so against them in my position?

Hi I do understand how you feel and am beginning to wonder if maybe they just dont agree with everyone but i suppose there is no way doctors would know that until you have at leaast tried them first.When they told me that i could possibly lose my sight i was only too glad to take anything to prevent that happening as i'm sure many would be. Although i'm feeling very low at the moment i do believe i was prescribed steroids for the right reasons and they continued testing for other things.Serj

Hi Betty - I have always been against taking pills of any description all my life (even a paracetamol) but, unfortunately, some of us do not have a choice of heeding, as you put it, \"being warned in advance of the downside\" when being put on steroids because, as in my case, with both PMR AND[b:641e6614e6] GCA, nothing else was available to protect me from and prevent me from losing my eyesight over the last 3 years. Also, following my experience of PMR the previous year which failed to be diagnosed, I was unable to get out of bed for 3 months and I was in so much pain which could not be alleviated by any painkiller. So, as you say, no they don't cure the disease, but, whilst I hate taking steroids, in my case (and I'm sure in the case of many others) thank Heavens they are available.[/b:641e6614e6]

Im with Mrs K on this I dont know what the statistics are for people with adverse reactions to steroids compared to people who take them with little or no side effects But I am certain they help an awful lot of people to live a normal life wheras we all know what it is like to suffer PMR pain without any pain relief !! I personally know 2 people who have been hospitalised because of severe reactions to Ibrofen ( Kidney failure and anapyhlatic shock ) and these are available over the counter !! My sister in law who has a rare illness which means your immune system attacks your muscles ( no pain just weakness ) is only alive because of steroids As your heart is a muscle she would have died unless a Cardiologist hadnt been brought to her in the middle of the night to prescribe a high dose of steroids Im allergic to Penacillan but Im sure it has cured millions So it is a case of yes we should be told the side effects and carefully monitorred but I dont believe they are just thrown at everyone ( I had to see a Rheumatologist to be prescribed mine because of low blood results ) I would rather take them and keep everything under control and not run the risk of developing GCA and losing my sight

Hi,

Steroids do get us all in a tizzy don't they :yikes: Without Prednisolone I'd still be strapped to my bed in tears. I simply wouldn't have a life without steroids at the moment, so no choices there. I've just lost a very dear brother to melanoma of the eye, so if there's the slightest hint of GCA I'll take whatever dose I need to avoid going blind and deal with the consequences. I know several of you are dealing with GCA at the moment, thank goodness there's a solution for you. My lovely Grandson is steroid depended, takes them 4 times a day and will do for life. Without them we wouldn't have him - he's now 13 years old, absolutely delightful and a black belt in karate! So I say 'thank you' steroids. There's always a trade off with any drug and some of us suffer the side effects more than others and I really sympathize. I've been quite lucky so far. My Consultant is very aware of the downside of Prednisolone and is very keen to reduce them as soon as possible, albeit very slowly. I've dropped to 10mgs today, so fingers crossed it goes OK. Halleluja, the sun is shining today and I think we'll all feel a little better for that 8) .

Take care everyone.

Lizzie Ellen

Oh dear! I really did not mean to upset anyone; perhaps I should not be quite so forceful (Aries; eldest child; ) Mea culpa. Sorry.

I have a friend who almost died before his GCA was diagnosed in his fifties and eleven years later came off the drug and was completely well with no recurrence thanks to huge doses of Pred. and, amazing to me, only rather attractive chubby cheeks as a side effect. so I am well aware that GCA sufferers have no choice and soon went rushing to the surgery when I suspected I could have GCA myself. I am lucky so far but I,too, would do whatever necessary to protect my sight.

What I was protecting when I asked to be weaned off Pred. was my sanity. I was a completely different person and totally unable to control my feelings of desperation. As I have already reported, within a few weeks, I had calmed down and felt my normal self again so you can understand how unwilling I would be to take steroids again. I remember saying that, for the first time in my life, I understood why people end their own lives. It was as though the master switch had been wrongly adjusted.

Last night a brainwave. As early morning is my most painful time I would put everything ready into the bathroom so that all I had to do was crawl from bed into the shower. Marvellous. This reminded me of a book. Arthritis: What Really Works by Arthur C. Klein. One of the recommendations is to look for small ways to reorganise everyday life PMR/GCA is not mentioned at all but I have referred to it frequently and recommend. A quick look at the detailed contents page soon gets you to the useful bits. No need to read cover to cover. Available in PB from Amazon

Oh Betty, my mum was an Aries and the eldest child but I got on well with her so I reckon it's an ok sign!

I guess those of us with GCA particularly, become fiercely protective of the fact that we have had the reassurance of steroids and in spite of their side effects try not to see them as the enemy simply because we don't have a choice.

You do seem to be in considerable discomfort when you get up in the mornings and I do so hope that it doesn't worsen for you without steroids. Have you tried Evening Oil of Primrose? It worked for two elderly sisters I have heard about and they recovered completely. I'm going to give it a try when I get off the steroids.

MrsO

Oh dear BettyE :sorry: We did gang up on you didn't we :!: Let's blame the Prednisolone :lol: I've blamed just about everything else on it at times. Seriously though, I do hope you find ways of coping with the pain and stiffness, just small things like getting everything ready for the morning gives you a feeling of power doesn't it. Take care.

Lizzie Ellen

Thank you all for being so kind, understanding and forgiving.

Am at the moment trying Vit C, cod liver oil and glucosomine and have recently added green-lipped mussel so I wont' try evening primrose just yet but keep it in mind. Love the pale yellow flowers, though.

So far ,if anything, the pain, even in the morning, is slightly less and MUCH better on the days when I get up and get going earlyish ( 7.30 )

Today went to the tip, Tescos and bought a light, slept PM and now feel okish. Trouble is that it is not always easy to move those early aching bones but worth it, I find. Good night and sleep well all of you, I hope. BettyE

BettyE

If you can get your zinc levels tested. If low level, it can lead to all sorts of problems. Please remember, we all try to help here and a vitamin balance is one of those things we sometimes forget.

Too many can do harm, to few do no good. And mineral levels tend to be overlooked.

On the good side, after three years, I finally have managed to reduce to 5mg and it has now been a week and for the first time no problems with the GCA symptoms so far. This is the third time of trying, two major flares had me back up to 60mg per day - now you know what I asked the question.

Steroid side effects have caused me problems, I now have a Blue Disabled Badge as I cannot walk more than two car lengths. And before anyone asks I do not have PMR.

The hope is that once I can get down to perhaps 1mg per day then the glands will kick in again and I will regain the mobility.

Yes Mrs O - GCA people are defensive and that is perhaps why we are pushing hard for friendly medication, and heightened awareness of GCA.

Hello Betty E

Yes sorry we have ganged up on you a bit !! But as not all people have steroid side effects I think as long as you and Drs are aware and keep a check there isnt an alternative The only people I know on Methotrixate seem to have worse side effects so all we can do is as you are and take all the supplements look after our general health and rest It is lovely weather ( for a change !!)So hope it will do us all good

I started my reduction programme to 12.5 yesterday and had no ill effects from some physical work I had to do with my horses at the weekend so now on fingers crossed I did get a bit fed up when I looked to see what doseage I had been on this time last year but I suppose if at first you dont succeed etc etc !! Mrs O and Mrs K have really had a struggle and keep going and helping others with their advise Sun is shining and I have a house full of daffodils for St Davids Day ( Welsh Heritage ) So best wishes to all for an improvement

Mrs K

That's wonderful news that you seem to have successfully made the drop to 5mgs and I'm so pleased for you - don't know about you but I felt that was a magic place to be when I reached it, probably because we are told that the side effects diminish at that low dose.

If it's any reassurance re your walking, I have found that as I reach each lower dose my spine side effects do seem to have eased. I was diagnosed with a slipped vertebrae of the lower spine long before steroids, but I'm sure they heightened the previous symptoms.

Mrs G

You've really put me to shame.......I am Welsh and I didn't have a house full of flowers for St David's Day yesterday - I'll make up for it next year and use the excuse that apparently they are late this year because of the freezing conditions Happy belated St David's Day to you anyway!

MrsO

Mrs.K

Thanks for the tip about zinc.

In the past year, because I continuously complained of feeling more ill than ever in my life, I had so many blood tests that another doctor remarked \"They have nearly bled you dry.\"! Infuriatingly they all (except ESR ) came back normal. When I asked how I could be \"normal\" and feel so ill the answer was \" I have no answer for you\" It was then that I said I thought my body had had enough of steroids. GP replied \"I think you are probably right\"

Having tapered from 5 to nil I began to feel better only to get head pains so back to steroids and all the same desperate symptoms. Apparently head pains were unlikely to be GCA,being located specifically behind my ear and not on the temple or generalised so weaned again and stopped 7 weeks ago. Since then I really AM normal except for PMR pain which so far have been able to tolerate. I wonder how long it takes for the Pred. to finally clear from the body. I am hoping that at least some of the pain is due to the remnants and therefore should lessen in time as I think it possibly has already just a little.

Thanks again to all for support and tolerance. Will keep you infomed in case my experiences may be relevant to someone out there.

Another beautiful day. Hope you can all enjoy it. Back to my greenhouse.BettyE.

BettyE

This may or may not help you in your search for an explanation.

Steroids and What They Do.

(written by a patient for patients).

Prednisolone – what you never wanted to know or expected to have to deal with in your life. But life does throw curves and we are in one.

This article can be found on www.pmr-gca-northeast.og.uk under Useful Information.

However, please bear in mind that everyone has a different metabolism and everyone has had different illnesses throughout their life span. Most things are written for a 'normal' - when I find out what is ' normal' then it will be the end of the world. We all differ from the normal to some degree, but it seems to be the only bench mark we have.

Two brilliant sunny days in a row but still a hard frost at night. Maybe just maybe Spring is beginning to be Sprung (and that's not a typo).