So happy with this community!

Hi everybody

When we first were approached by HealthUnlocked to set up this community for people with PMR and GCA we were a bit sceptical. These aren't common illnesses so would it work? Were there people out there who would really be able to give and receive support 'virtually'? Now a few months in we are so pleased with how things are going. We just wanted to share with you that we get weekly emails from HealthUnlocked with a figure for how many people logged in in the week before. This last week saw 65 people logging in! That's great, because it means that for every one person who is posting, there are several more who are reading, and gaining information and support from hearing about other people's experiences. But how about some of you posting as well. No pressure, but the more people post, the more we can learn from one another.

Nadya is off on leave this week, having a couple of days at the Olympics, and Kate is off for a few days as well from Wednesday. We would like to thank Pats in particular for being a willing volunteer, helping to moderate the group and for being so generous with her time and attention. And also to Sue, who has thrown herself into this forum with great enthusiasm!

There are many others, too numerous to name, who have helped us all along by blogging and posting questions and answers. And many thanks to all of you for participating. We are learning so much from you!

Healing thoughts and warm wishes to all of you,

Nadya and Kate

13 Replies

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  • Is that me you mentioned above? If so thank you very much. I have found this group to be so so helpful. I had never heard of this condition until March 1st 2012 When I was diagnosed as type 2 diabetic and the doc mentioned that he thought I had PMR. He held off from treatment because of the diabetes but by the middle of June I was in so much pain they had no choice. The doc asked me if I knew anything about PMR at my steroid review last week and I told that I had done research and found this fantastic group I think it was much to his relief that he did not have to explain it.

    Pats has been amazing, she is like having a virtual mum telling me to slow down when having a flare and I feel like her know her for real :).

    So a BIG thank you for all the support given to me over the past couple of months.

    Sue

  • Hi, it's Corralie

    Havent communicated since first communicating! I'm now on my ninth month of illness. Unfortunately have had a rather nasty flare on attempting to come down from 10 mg to 5 mg. I went back up to 6 mg, no improvement, then 7 mg, still no improvement, so went to the docs. He has put me back to 8 mg (it's my sons wedding on the 1 Sept so I really must be able to cope on that day!), and after the wedding it will be 7.5 for a month, then 7 etc. It's a common problem apparently that below 10 one can have problems like this.

    Feeling much better after a week on 8 mg. I hope it continues. Havent been able to get out to buy an outfit for wedding...oh dear. The shops are full of winter stuff too. Still there's always the charity shop! And you know the old saying regarding the groom's mum? 'turn up, shut up and wear beige'..........

    Best wishes to all.

  • Hi Corralie,

    So glad you're on the up again.

    I know how hard it can be, shopping when you have to pace yourself. As for that old saying, the only part that is relevent is "turn up". As for beige, forget it!!!!!!

    When I need clothes, I get onto the M&S website. I find it never disappoints. You don't have to go to the groom's mother dept. If you live near the shop and you can't take anyone with you to help, go in grab an assistant, explain whats what and she'll help you. Pace yourself with frequent trips to the cafe.

    I often photograph clothes I like off the comp. screen on my phone and usually they will have them in store or you could have them delivered.

    As a wedding can be rather stressful, in the nicest possible way, I would stay on your present dose of pred until it's over.

    Pats

  • Hi Kate,

    Please keep up the good work! In my case PMR took over three years to be diagnosed, I was so reassured by finding this invaluable PMR GC Blog. The leaflet on PMR given by the NHS was helpful and Pats words were very helpful to me, particularly as my GP doesn't seem to want to refer me back to my rheumatologist who "discharged" me after six months of tests. Since then the aches and pains fluctuate lots but it is livable with though sleep is badly spoiled.Usually two hours after getting up, it gets easier. I still limber up at the gym weekly and keep an eye on my weight. As I undertand PMR, it is listed as a disease usually responding to reduced steroids giving reduced pain levels. Usually it indicates sufferers are of Viking origin (no signs of the horns in my case!) Thank you all for such support letting us help one another!

    Triker

  • Dear Kate and Nadya

    You've no idea what a comfort it has been to find this on-line community. I have some knowledge of the illness as my good friend had it and recovered and my sister is a doctor, but everyone has a different experience and knows it from the inside. I am feeling my way towards a 'maintenance' dose of pred of 5mg and planning to stay there till after Christmas. Inevitably some days are worse than others but I know where to come for the fruits of others' experience.

    Thanks

    Annodomini

  • Dear Kate, Nadya and forum contributors

    Please do continue all the good work with this forum and with also with promoting PMR and GCA awareness generally. I am sure there are many who look, read and benefit from all the information but don't necessarily contribute to the forum.

    I was diagnosed ten months ago and, like others on the forum, have had difficulty reducing the pred. The first reduction from 20mg to 15mg after a couple of weeks took me back to square one. A second attempt wasn't much better. My doctor's reaction was that I just needed to reduce.

    Reading the experiences of others on the forum I decided to take control. I am down this week to 12mg each day and it is going okay. Last week I did 13mg and 12mg on alternate days. Next week I will alternate 12mg and 11mg and so on.

    I still have tendonitis in one foot and numbness and tingling in the other! The tendonitis is bad as it is stopping me from walking far and I keep falling down - I am becoming a very cautious walker! Physio didn't work last year. I am waiting for a possible directional injection of steroids - the radiologist will make the decision if it is possible. Has anyone had any experience of this. I am convinced it is linked to my PMR.

    Thank you

    Penny

  • Hi Kate,

    I am so glad that HealthUnlocked had the proactive approach in seeking you out and more to the point that you took up the gauntlet and ran with it (pardon the Olympic pun!). I've certainly been encouraged by the comments made, hearing of the various ways folk deal with the condition, particularly the tricky balancing of meds and thosee little symtoms that you think are non related are experienced by many. Most of all knowing we are not alone and can support each other.

    So, well done and a A Big Thanx ;-)

    going2Balright x

  • Hi Kate

    Like everyone who has posted a comment it has been a lifeline to me knowing that I am not a freak and that there are other people experiencing the same difficulties reducing their medications. Coping with GCA is not easy and the support I have received from yourself and others has been tremendous. Thank you and keep up the good work.

  • Hi Nadya and Kate,

    I am so greatful that you decided to give this community the go ahead. It has given me the extra support I was lacking and I'm so pleased to have helped others along the way. I've lost the feeling of being alone that I had before I joined.

    Other members are often so generous. Sharing aspects of their lives apart from their struggles with these illnesses.

    Pats

  • I'd like to say a big thank you to Nadya & Kate for setting up this community. It is a great comfort knowing that help and support is available. When my wonderful GP left a month after starting treatment you helped me through a very difficult period working my way through a large group practice until I found another GP I had confidence in. One of the GPs actually told me that she was surprised that I had problems with my shoulders as PMR usually affects the legs not the shoulders!!

  • Hi Pat,

    Oh yeeeeeeeeeeeeeh. I wonder why we need specialists!

    Pats

  • Hi Kate, I trust you are well, i agree with all the comments above it seem t work well but am i the only guy who writes on here? keep up the good work

    Steve

  • Thanks, Kate. I'm in agreement with what you have said. I know that as a single professional, who is now part time, due to disability, navigating all of this alone in New York City was a big task. The minimizing, the quick answers, the doctors who wanted to take large payments and then give very little information, a prescription "bye" and "I'll see you next month" --- --- really didn't deal with this serious disease. There are doctors who do and will take this seriously, but you have to find them. And in the middle of dealing with this new and very serious disease, it isn't easy to find them. Especially when you have the worst headache of your life and feel pretty bad. The blog helped a lot. I found that this is an international problem and what people in England are fighting for, we in the states are also, similarly fighting for. Eventually, it seems you get a doctor who understand, cares and will actually do the research if he/she doesn't know (and many don't know, as we are finding out). Research needs to be done, many people are getting these diseases, once thought of, as "diseases of old age" at younger and younger ages.

    I think the sharing of information sets up a place where symptoms are taken seriously, good information is exchanged and it can add to the research we are presenting to our doctors. I think it validates the symptoms and these diseases, which is a major support. Sometimes unfortunately doctors and rheumatologists, want to pacify you, give you prednisone and then "next" patient. If you want to talk about, the harms of prednisone, alternatives and "what can I do" "how can my participation and active desire to deal with disease help -- to overcome it" --- this falls on deaf ears. The blog helps to overcome this, I believe and helps to make us active participants in our treatment and healing.

    Thank you.

    all my best,

    Whittlesey

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