Have to increase dose again!

Definitely deteriorating rapidly - typed my name twice - oh dear!!!!!

Hi Eileen and others,

I did post the direct link but just takes you to the sign in page for Medscape. I did Google Eileen's exact phrase and could read the first page without signing in.

Regarding the post being cut I have queried this as I noticed someone else seems to have been cut off in their prime on another subject. I was reassured there is not a limit but I am not convinced. I will chase this up as a matter of urgency and do some more testing (there certainly wasn't a limit on the test version).

Eileen - I have since noticed a couple more posts by yourself that have been cut off. I will email you details if you want to check them but there does seem to be a problem so I would suggest for longer replies splitting it over 2 posts until I can get word about this. It looks like a cut off of 4 000 characters which doesn't help I know but it is consistent so I can report this.

Things are moving albeit slowly but one thing I will say here is if there are any other problems the feedback link is now at least in the footer on these forums pages so drop me an email if need be.

Or just ask a question in the forums but use the word moderator as I scan all posts for this word in case of any queries.

Thanks,

Alan

Shirley - I lied! You also get the useless single box when you look at the posts first before signing in and click on the reply box which then directs you to the sign in page. If you sign in first and then go to the PMR discussions you can see the posts whilst replying.

Thanks Alan Moderator - I did register the other cut off posts today. No help though - couldn't tell you what I wrote in the bits that are missing! Like everything else - it would have been so nice to know the new rules in advance! Did they really test a long post? Should have got in the expert on long posts ;-)

I hadn't added the link that takes you direct to Medscape - it's ages since I registered but I didn't think there was anything complex about it - don't remember what I claimed, other medical professional or something of the sort no doubt (I translate medical texts :-) ) It's free-to-air so to speak and there are others on the other forum who use it. I would like to think that a doctor would be registered - but my impression is that their reading to keep up to date isn't very good. I do have the paper as a Word file but there is now no way to offer it to people by email as I'm certainly not publishing my email address here for them to contact me.

Eileen

Hi all,

The best way to use this site until we get the improvements is sign in BEFORE doing anything much as Eileen has said and is finding out. This is one of the top fixes to be done but will take a while.

There weren't any new rules as such in advance, I've just come across this one recently and learning with everyone else. I know it was well tested on the test site because I did it :-) and there was no limit there.

As for posting email addresses, we wouldn't publish it anyway but you will have the PM facility back, another one I've requested as high priority.

If anyone does want to swap email addresses you can do this through me, either email me using feedback link at the bottom of the page or post the request in here (quoting the word moderator). I will not pass anyone's email address on to anyone who just asks for it but would contact the other person first. So, if someone says can I have Eileen's email address I would say no but I will pass the requestor's address onto Eileen if she did want to contact outside of the forum.

I hope this helps.

Alan

PS I wish we had preview mode to check these before submitting :-).

Alan

This is a classic case of 'if it ain't broke' DON'T FIX IT.

I hope I never meet whoever decided to change this site.

I am totally lost. I liked the neat way the post headings where listed so that you saw them all and by date order of last replied to.

The way the little thing 'flashed to alert you it was a 'newbie.

The whole thing is a disaster of 'Titanic' proportions.Or is it just us PMR & GCA'ers who are complaining like billy ho.

mrsK - who is on the brink of giving up.

Eileen

Never mind - I thought you'd cracked it for me but I'm still just as confused - not that it takes much these days!

Shirley

Alan

I agree! It didn't need to be "fixed"!!!

I think the PMR part of this site is more active than most (and the members far more helpful) - having tried some of the other areas for other medical conditions.

I feel strongly this was used as a lifeline for so many PMRers and as a result of the changes people are losing this valuable resource.

Bring back the old one please.

Why is it apparently impossible to undo this new thing and bring back the old one when the old one was infinitely more user friendly?? Do we, the users, have NO say at all??! Why should we have to submit to some men in grey suits who have nothing better to do than change for change sake?

Are not the users the important people in this? Who is this resource for anyway? - Is it not there for US? What is the point if we can't use it?

Come on now, be reasonable - accept this is not working and give us back the old resource - PLEASE!

In my job (in education), if the users (ie schools) don't like a change we have made, we respond to feedback and change it back.

Beev

Beev

Hi all,

It is not only this forum who are complaining and I do pass the comments and feeling on to try and speed things up. We should be getting the revised timescale for fixes very soon and when this happens I will let you know along with dates when things *should be* done.

I can only say again I know how you all feel and if you do decide to leave it will be a great pity. If you do feel as though you cannot use this site until changes happen I will keep you informed via the NE website forums and email in case some of you are not on that forum. I know a lot of the users here who are on the NE one but if anyone wants me to email when changes occur please reply as such in here (but don't post your email address, I can find it from profiles).

If you do carry on - I do try and post some "tips" on how to get round the problems but I'll start a new discussion on Monday where you can ask specific questions. If you have any now, post here and I will move to the new one when created so we don't fill up the real discussion with general problems.

Hope this makes sense and I am always here to answer anything (if I can :-))

Alan

Alan - I know it isn't your fault but what is going on? In some ways it's getting worse not better. It takes ages to load, it has a habit of crashing if you are daft enough to try getting here direct from the email notification and now a few people ARE using it it takes forever to get to a discussion and then to the latest post. If there are 63 posts who on earth wants to read the first page? Then you still have to scroll down to find the other one with a new comment that is no 28 in the list.

I don't think it was men in suits - I think it is a load of wannabees who have sold their services to Pat Exp with no idea at all what they are doing. Misrepresentation I believe it is called. If MrsK is fed up that says a lot given her support for it initially and I know how much this site meant to her in her journey. I don't come here unless I have at least half an hour to spare and even then I feel lost and fed up looking for things.

Eileen

Hello everyone,

Please see https://patient.info/forums/discuss/forums-questions-35724

I have started this discussion in the General category to save filling up the discussions with general forum admin talk and queries so please do post questions there.

If you cannot find it in future as it will get "swallowed up" in things :-), go to the A-Z on the right, scroll down to General and it is in there under Forum Questions.

I'll just add here again that I do pass on the general discontentment in order to try and speed things up.

Thanks,

Alan

Hi Alan

I couldn't access your link - it came up as "Server Error". I'll try accessing from the A-Z as you suggested.

MrsO

Hi MrsO,

I fell into the trap and put a full stop at the end of the link which breaks it. This is yet another bug I have reported and it should work now.

Alan

Alan thanks. But now worries as I did get there through the A-Z, General.

MrsO

hi everyone - my issue is about prednisolone dosage and the ups and downs thereof, so thought it might be appropriate in this thread - i've had a quick read through much of what's here already.

eileen - you may or may not have had my email off-forum, but i'm posting it here verbatim as originally sent to you - as you can see i've now found the forum! here goes:

hi eileen -

i had intended to write this to the forum (the smaller one, not the big one) so that everyone might benefit from seeing your answer, but i seem to have lost the details of that forum! (you could perhaps give me the address again.) as i think i've said before in off-forum correspondence, if you wanted to copy our exchange/s to the forum, for the benefit of others, please feel free to do so.

now - tamar has been steadily decreasing the prednisolone, more recently at the rate of just one-third mg per month. at the beginning of may she moved to alternating days of 7 and 6. the last week, however, the pmr has been creeping back and today is pretty bad.

i asked her rheumy some time ago what to do if and when the pmr returned and he said 'increase the dosage by 1 mg'. so my immediate course of action is to go from alternating 7 and 6 to alternating 8 and 7.

my question is this: how soon should we expect an improvement? how long should we wait before increasing further? how much? and how frequently? i believe you once spoke about yo-yoing - so what has been your experience and approach when this happens?

many thanks in advance

sincerely

raphael altman

hi just to let you know eileen is in hosp at the moment ,increase in pred can work quite quickly if it improves stay on that dose for awhile before trying yto reduce again carolk