Goodbye!

Well, what can one say? Not sure I can hang about with a lot of cynical people, and spoilsports!!

Hope everyone's journey ends with a happy result!

[DorsetLady PMRGCAuk volunteer]

I think most on here are open minded, and some are willing to try alternative options to ease our pains in preference to recognised medication. Myself included.

But there are tried and tested remedies out there, and lots more that aren't - so you pays your money and takes your choice!

This forum is open to anybody's opinion, and any post will have those that agree and those that don't - and replies will reflect that.

It's called democracy.

[HeronNS in reply to DorsetLady]

It's a pity "hidden" vanished before having a chance to hear other opinions. As you know, my reaction to going on pred was to consider that there was no point taking that medication if, when I weaned off it, I was returning to the same body that got sick in the first place. On the other hand, I've been reading a book about how incomplete microbiome can lead to autoimmune disease - which means most of us who are ill from that cause these days were set on the path even before birth, if our mothers were deficient, or in childhood with our first course of antibiotics. Now that we know the importance of the microbiome it's possible to remediate issues if we start early enough. Once we're sick with the autoimmune disease then it's too late to cure the disease, although we do what we can to make ourselves healthier.

[Slosh in reply to HeronNS]

HeronNS - I agree - What is the book about the Microbiome called?

[HeronNS in reply to Slosh]

Slosh, it's a somewhat frustrating read as he spends most of the book making his case. As I'm already on board with the idea that microbiome is very important I kept wanting him to tell me what I could do about my own probably incomplete microbiome. But it's readable and informative and I recommend it.

Rodney Dietert, The Human Superorganism (Dutton, 2016)

[Slosh in reply to HeronNS]

HeronNS - thank you will have a look.

[Patience47 in reply to DorsetLady]

DL

I have learned so much from you,PMRpro, and so many others. Thank you all for being kind enough to take the time to help others. I've had PMR for nearly 4 years, and I'm still learning about this disease thanks to you and others on this forum.

[betty1943]

Is this a belated April Fool? If not, why hidden? Don't you want to argue your case? I've many questions, why spoilsports why cynical I've found nothing but good information , help and support and I know I'm only one of many hundreds.

[Hidden in reply to betty1943]

Probably a troll, about 12 years old...

[Hidden in reply to Hidden]

...and I've just seen the original post below. HealthUnlocked isn't the most user-friendly site.

It's still a troll.

[Rugger in reply to betty1943]

Have a look at the post : "How to stop attacking yourself : 9 steps to heal autoimmune disease" and the replies and you'll see what it's all about. "Hidden" did have a bona fide user name, but I'll not put it up here, as the thread has been closed by the administrator.

[betty1943 in reply to Rugger]

Thank you Rugger, I've found it and it is very good.

[Peetee]

Who got out of bed on the wrong side?

[Hidden in reply to Peetee]

Am I being cloned?

[Ronnie101]

No idea what's behind this, but I am very indebted to the regular and irregular posters on this forum for the time they give. It has helped me a lot.

[Ronnie101]

Sorry, now I realise what's going on having read other threads!)

[SheffieldJane]

This is quite sad.we ought to be able to accommodate different views.the hope is that supplements and complimentary medicine can bring a sense of control and in some cases relief. My husband's eczema cleared up with Homeopathy alone in the 80's never to return.

I understand that the forum cannot promote commercial websites but thinking outside the box has to be good.

( ducking)) 😊

[jinasc]

When a post appeared with the name 'Hidden' - my personal alarm bell rang. Why use 'Hidden', do they have something to hide?

Yes, I use Sambucca for, I think, a good reason..........I don't want people to think I know more than I do and because I help run a charity, I am an expert. I am not, far from it. But in this world, some people look at titles etc and think.................

We do accommodate different views, we all are aware that what works for one, may not work for another..........we are exchanging experiences, looking for information that might just help us and perhaps work for us.

I use sometimes use 'old wives tales', homeopathy, but first always checking for compatibility with what I am currently having to take. Some work, some don't.

The mantra is 'Do No Harm'.

Scientists are currently working in Africa, the whole of the Amazon basin and many more places, where indigenous people still use 'old wives tales' and then before they are lost to us they need to be recorded for the future. They do this because their is always a grain of truth and nothing must be dismissed, just in case it can help.

The classic example is 'Aspirin'...........

We have to be alert and use our commonsense and 99% of the people who post do so.

Never mind the statement made (in the other post by Hidden), 'we all want to get off pred'. That should read, we never want to take any sort of medication at all. We would all love to live our lives, free from any health problem that comes along.

The world is not perfect, far from it...............but it is the only one we have.

[HeronNS in reply to jinasc]

As Rugger pointed out the poster did have a name, but I suppose if they deleted their profile then their name would disappear?

[Mama48]

What a shame you haven't found this site as supportive and informative as I have. It's helped me a lot on on my PMR journey, especially advice on decreasing pred intake. After 2and a half years I have stopped taking it, I do get stiffness after sitting for a while and aching thighs climbing a lot of stairs, it's good to be pred free and I'm hoping it continues that way. Prednisolone was a magic wand for me, I felt that I was able to go from existing, without it, to living again. I'm extremely grateful to it!

[30048]

Good-bye Hidden and may I add good riddance!!

[Tonylynn]

I am sorry you are leaving. This site needs good quality professional input. PMR and GCA can be horrible and are not well understood. It is not surprising sufferers turn to unconventional forms of "treatment". We know, for instance, that there can be no way that homeopathy can be successful but the placebo effect can be very strong, even in patients who know they are taking a placebo, so other forms of therapy may help, but not as an alternative to informed medical opinion.

Unfortunately we do see members of this forum taking matters into their own hands and ignoring professional advice. Sometimes we see instances of professional advice not meeting the standards we should expect. This forum helps in the educational process.

Sufferers must be encouraged to stick to professional guidance and sometimes a second opinion can and should be sought.

Stay with the site and continue to help those who need you.