Have to increase dose again!

PS If it's any consolation I even have to approve my own posts when adding urls as above, another dev request going through :-).

I have also asked for a "trusted user" status so when regulars like MrsO, Eileen, MrsK etc post urls they can do so without the posts being hidden until approved.

Alan

Alan

You must be fed up with hearing our moans but thank you for taking the time to let us know that improvements and reinstatement of original items are still in the pipeline.

Shirley

Eileen

Thankyou for that suggestion. yes my ESR does seem to be a good guide. I was in the low teens most of last year then suddenly plummeted to 7 before pinging back up high - thats what I dont understand - its as if it yoyod!

I will stay on 5 till I am low teens again. I seem to organise my own blood tests and am seeing my doc in late March. I do think I might have managed to come off completely if I hadn't had those other health problems which raised my stress levels enormously.

I will try the other forum sometime but don't get much time and this one seems simpler despite the changes.

Beev

Beev - if you just had a single reading of 7 it could have been a duff measurement - these things happen and there are all sorts of things that could have accounted for it. Any reading that doesn't fit should really be checked to confirm. A high one could be due to something else - but the signs and symptoms should also be taken into account.

Eileen

Eileen

Yes - but when I had the ESR 7 I also had really weird loose feelings around my joints when I walked - felt like my adrenal glands were in overdrive or something! Then the next time i checked it was 37 (and i also had stiff upper arms). It was SO strange - like it had gone right down ready to jump up! This time (with the 24 ESR ) I have a stiff neck.

Beev

Yes, I remember you saying that about your joints. Funnily enough someone who writes a blog about living with RA (rheumablog dot wordpress dot com if you are interested) also mentioned having this feeling of loose joints a bit back before a flare of her RA. I wonder if it is the tendons not being happy?

It would be interesting to see if you settle at a mid-teens sort of level generally and this drop can be identified as a precursor to a flare in symptoms. How very intriguing ;-) Nothing simple about this game is there?

Eileen

No - nothing simple!! After my latest health scares, i am just resigned to staying on them longer than I had thought - and let's face it, there are worse things....

How are you now? Am I right in thinking you are taking methotrexate (sp?)?

Beev :-)

Beev

Seem to remember tendon damage appears on the dreaded list and I'm sure my hips are "loose"

Moderators it would be a big help if there was a way of being able to refer back to the post to which we are replying. Well, it would for people like me. Maybe I'm supposed to put this in feedback.

Hi BettyE,

If you mean use the quote facility that was available on the old site, this is one of the requests I have put in for. It may take this form or being able to reply in the middle of a thread. So for example, if someone leaves a comment on a previous page and you want to respond directly to it, your reply will appear under that comment but indented.

If you mean when you follow the link from the email and only having the reply box this is also in hand to fix along with whenever you post or reply etc, it takes you back to where you were rather than the top of the discussion.

If you have any other questions or suggestions you can use the feedback or if you post in the threads I will come across them as long as you include the word moderator in your post. I search all new posts for this to find any messages that may need a response.

Hope this helps.

Alan

Beev - no, no mtx, wouldn't touch that with the proverbial barge pole ;-) and it is unlikely I will be asked to - my rheumy here in Italy doesn't believe the mtx theory, he agrees it is probably the patients wrongly diagnosed with PMR instead of LORA who respond to it.

I'm generally fine - unless I try to reduce below about 9mg/day pred. ;-)

Eileen

Alan

No she does not mean that, what she means is that as I am typing this I only have the box. In the old day, below where I was replying was the post I was replying too. This enabled me to see exactly what I was replying too.

Go to t'other forum and you will see what we are trying, in our own inept way to say.

Also, can we have last post first. Scrolling down to find the last post is a nightmare.

Sorry I could not send this to you, Have not worked out with the PM is yet.

Hi MrsK,

Ok, and yes, this is in hand (requested anyway) as well as the ordering of posts. I know exactly what you mean but as I am typing this I do have the thread above this box but have to scroll up and down and you cannot view all pages unlike the old site where all posts were viewable. If you come from an email then sign in you just get the reply box or if you read a thread then click reply and sign in you have the same problem.

Until we get this and the "remember me" sorted, if you come to the site and sign in before reading any discussions or opening links from emails this should help. I know it is not ideal but until fixes are in place this is the only work round I've found for now.

PS you won't work out where the PM is, it doesn't exist. Also requested as a high priority.

Later on when I have time I will start a new discussion where I can post these comments rather than fill the "real" discussions with admin. Once done I'll move all of these over and tidy things up a bit. Continue to post any queries in the threads but then I'll reply in the new discussion and just link to this as a reply in the thread. So hopefully it becomes a FAQ/Tips section. Once the work and changes to the site have been made I will be writing a proper FAQ.

Thanks,

Alan

beev, about the "loose joints" feeling: I've got the same feeling, but it's in my knees when I walk. Feels like my knees are made of rubber sometimes--hard to describe--like my legs are "twanging" when I walk. That may not be the best description! : ) I wonder if it is caused by the prednisone --that side effect on the tendons? I think I've had other tendon and capillary problems from the prednisone so it would make sense.

freesia

beev, I forgot to ask you, what is your CRP currently, or do you use that at all?

Thanks!

freesia

Hi freesia

Hope Ive got your name right - cos I cant see your post as I write this!

No -Ive never had CRP done - only ESR. Was at 24 2 weeks ago and Im waiting til my slight neck stiffness has gone (on 5mg) then will have it done to see if I can start reducing again.

How about you??

Beev