PMR query
Posted , 6 users are following.
Hi Everyone
I just wondered what happened to this PMR forum. It took me sometime to login.I feel so lost not able to read any mail from anybody in this forum.I am still having flare ups with my PMR and i would really like to discuss this on the forum, but it seems so distant now with no mails from anyone in the forum. How can we start this forum again like before, so that we can share our PMR ups and downs.love to hear from someone .
0 likes, 9 replies
peggy_56092 ling42044
Posted
A change in management causes one to check in for messages unless the message is personally directed to you, such as this one. Many have gone to Healthunlocked. EileenH checks in once a week. You must check into your "notifications" to see any emails.
ling42044 peggy_56092
Posted
Hello Peggy
thank you for replying. How do i check in 'notifications'?Can i see other emails even if it doesn't come from me? Whilst I am here, I would just mention that I've had such a bad flare during lockdown time. I was on 5mgs at the time (has PMR for 7 years ) . I don't know what happened, but I suddenly felt extreme fatigue, and ached all over, muscles and joints. Anyway , my ESR went up to 85 and CRP gone up to 127.During this time, I also become anaemic HB 9.4 (which i've never had before) , most worrying is that, I lost about 8 kgs in 2 months unintentionally. the other factor was that my Ferratin level also went sky high (over 320!) . I put my Pred up to 8 mgs , and gradually feeling better overtime. The muscle and joint aches gradually ease.This is 4 months ago. I have stayed on 8mgs since. Now my blood tests are returning to normal. I am nervous to reduce from 8mgs to 7.5 or 7 even with the DSAS method. I am feeling quite alright now. Shall I try to reduce? MY Gp is happy for me to manage the pred regime .Shall i reduce? or take 8mgs for another 2 months ? Any advice / suggestion will be much appreciated.
peggy_56092 ling42044
Posted
For PATIENT forum: To see recent emails check up top, left corner, Community. Or right hand top, Notifications.
peggy_56092 ling42044
Posted
An entire paragraph that I wrote you just diasappeared. I am in my 5th year of PMR/pred, currently on 4 mgs (after being on 3 mgs for a month) as an old arthritic hip pain started to emerge with the lower dose. I use Dorset Lady's pred reduction method, using 1/2 mgs as it seems easier to figure whether to stop, go back. I guess you know the usual method for a flare is to go up 5 mgs from the dose you are on and then come back slowly within a week or so. Over a year ago I went to the ER three times within three weeks with different ailments for which they couldn't determine the problem. I finally realized that I was having a flare. I had to go back up the original 15 mgs and gradually get back to 7. During that time I became anemic(sp?) and was given Ferosul, which I still take, along with K2 and 2000 units D3 w/calcium, plus multi vitamin. I agree that you should stay on your current dose for a while. No pain is gain.
nick67069 ling42044
Posted
As Peggy suggested, most of us moved to Healthunlocked. If you google for it, you will get to starting page where you can join. As far as your dose, if the symptoms are under control, you may try to reduce from 8 to 7.5 and see what happens. Because you were at higher dose for long time, you must reduce gradually ( taper using DSNS).
Anhaga ling42044
Posted
You will, as Peggy suggests, find a lot more people using HealthUnlocked forum now. I used to use both, but preferred Patient until a series of "updates" made it incredibly user unfriendly.
I may have found it easier than most as right from the beginning I'd disabled e-mail notifications as they filled up my inbox. I have only ever used the notifications button on the page. I remain, for now, logged in permanently on my computer, but I understand that soon this will not be allowed. Hopefully my computer will continue to do what it does with most sites I need to log into, and that is to remember my password so I only have to tick the box to get in.
Even so, I found various changes to the site made it strangely slow on my device, and as no other site has gone like this I have to blame Patient itself. That, and the calamitous decline in users has made me turn more to HealthUnlocked. At least there there are many patients to communicate with, although in some ways the organization of the site is sort of messy compared with this one. Eileen, btw, uses the avatar PMRpro on HU. I'm HeronNS there.
ling42044
Edited
Thank you All for responding to my query and email. I think I will try Healthunlocked.What a shame that this PMR forum has become so 'user unfriendly' . I hope the moderator will see this and move the format to how it was, when we were getting so much support from each other. It is lockdown time again , so I have to keep myself well and sane !
EileenH ling42044
Edited
We've told them enough. I think the Moderator sympathises but is also ignored.
https://healthunlocked.com/pmrgcauk
But several of us are to be found at HU and the advice tends to be the same!
ling42044
Posted
Thank you Eileen, nice to see your post again. I have not seen any mail from this forum for so long! I did go to the #health unlocked' page, i didn't find it as useful as our previous forum. But as it is that we are not going to get any mail from anybody, i might as well quit this and go to the 'health unlocked' .
I just have a few queries about my PMR ( my 7th year) , i am sure you can enlighten me . During March/ April this lockdown time , I had a very very bad flare (which i wasn't aware of, I thought it was something else!) . Basically, I lost 8kg of weight, extreme fatigue, extreme aches/ pain all over, can't sum up any energy to do things. When eventually i had the blood tests which showed high ESR and CRP and V high Ferratin level and low HB of 9,4. plus abnormal WBC. My Gp prescribed me iron (which i thought strange, as i had high Ferratin!) . I did not take the iron, after getting some info on the internet. I didnt know i can get anaemia from chronic PMR !! I went up my pred from 5mg to 8 mgs , and i am still taking 8mg now for 4+ months. I gradually got better overtime, and my blood tests now more or less back to normal.
I dont know whether to continue with 8mg for longer or start to taper down again., The flare had made me quite cautious. My GP doesn't seem to have any better idea to manage my PMR, so i am left to my own device. Thank you for your help and advice. I hope the forum moderator will switch it back to how the forum was run before.