Thank you

[Asbeck]

Thank you to all of you. I'm not sure you understand how incredibly helpful you are to me and to everyone who posts. No one I know understands this problem. No one helps, ever. But you are always there. I don't know what I would have done without you.

[DorsetLady PMRGCAuk volunteer]

Hi Asbeck,

I think we can all echo your thoughts.

There have been times when I felt very low, last summer for example when I was waiting for a cataract operation on my good eye, which seemed to take for ever! It was also a year after I'd lost my husband, and I think I just hit rock bottom! But after one post on here, the reaction, without exception, was overwhelming, and everybody's kind words really gave me the fillip I needed to face life again.

I think because we've all been in dark places, we can really empathise with those going through bad times, and genuinely want them to feel better, both physically and mentally.

[Asbeck in reply to DorsetLady]

You really have been through the ringer. I hope and pray that it continues to go better for you. You do empathize. In fact we can look at what you have been through and thank our lucky stars for not having as much bad luck and that you remain helpful to us through it all.

[polkadotcom]

I feel that only those who have been there before can follow you in. Then we do our best to pull you out!

[Asbeck in reply to polkadotcom]

Thank you polkadotcom. Like the others who have responded--you have been through one heck of a lot. Thanks for taking the time..

[daveD]

Hello Asbeck. I feel that these forums have been my main sauce of information, for a illness that i and a lot other folk had never heard off and that includes a lot of Doctors with a very limited amount of knowlage? on the subject. I like to think there is always some one there with good info & words of support. nice thought polkadotcom. Best Wishes to One & All.Dave

[Asbeck in reply to daveD]

Thanks Dave!

[Gtgirl]

Thanks from me too, for the past 10 months you have unknowing been a tremendous source of information and support.

[Asbeck in reply to Gtgirl]

Gtgirl: Wow! Who knew? You have made me happy with your post. It might help for you to know-- I think that I am getting better. I had begun to think that this would never happen. It happened relatively suddenly. I'll keep you posted.

[chockybuttons]

Understand completely, it's sometimes difficult to explain it all to people who don't have it, and you kinda don't want to make a big thing about it, if you know what I mean, but it is a big thing and we have every right to feel yukky with it! That's why this forum is great, cos everyone understands everyone else! Take care..

[Asbeck in reply to chockybuttons]

Thanks chockybuttons!!

[Dobermanlover]

Like Asbeck, I would like to thank every one who posts on this site for doing so. Having been diagnosed in May with PMR, have had very little help from my doctor, although very kind, I don't think he knows that much about it. After having blood tests to try to work out why I was in so much pain and so stiff, he phoned me and told me that I was most probably suffering from PMR and to collect a prescription that pm. I started taking them straight away and the next morning (15mg each time) and felt so much better that day. The following day took them, and whilst they helped, I was in a lot of discomfort. Further blood tests and a second visit to the doctor 6 days later and he said that I had not had the reaction he had hoped for and to stop taking the steroids and arranged loads of other tests for me. I was a little taken aback at having to stop them as I had started to read a little about PMR and it seemed that sometimes people needed more Prednisolone to get rid of symptoms, especially as having 2 lots close together had had a very good effect. Unfortunately, my instincts had been right, as the next day (a Friday) the pain became worse and worse, I could hardly move, the night was the worst I had ever experienced in my life. I did not sleep a wink. When my husband saw me the next morning he wanted to take me to A&E (I had been sleeping in the annexe as unable to get upstairs). I decided to phone the doctor - of course they don't work on Saturdays! Got in touch with 111 a doctor phoned me back and luckily I had 2 days of steroids left which I took. I saw a doctor on the Monday (mine had gone on holiday!) and she gave me enough to tide me over until my own doctor got back. By the Friday I was still feeling pretty rough and had been in touch with Arthritis Research UK who suggested that it seemed that I should in fact be taking a higher dose. I spoke to yet another doctor that day who put me on 30mgs a day and I can cope on that. I do however also have to take 8 Co-codamol 8x500 per day to keep comfortable. My doctor has referred me to a Rheumatologist. I saw my own doctor

earlier this week and he has prescribed 30mgs for 14 days, then 20 mgs for 14 days, then 15 mgs a day. Reading many of your posts these seem very drastic reductions.

I must apologise for my ramblings, didn't realise I had gone on so much!

[chockybuttons in reply to Dobermanlover]

No apologies necessary, you are not rambling It's all very confusing, I'm 49 and was diagnosed with GCA in January this year, doc started me on 15mg prednisolone, next blood tests showed improvement so she put me on 12mg, then 10, then 9, then blood tests showed head worsened and it felt it... so she put me on 10mg again, have got a blood test this friday, have been feeling quite drained, but don't know if that's cos of me GCA or what, obviously may not be. I work mornings, computers, which won't help head. I sometimes kip in the afternoon if feeling ruf. Am lucky I can do that. Will be ringing doc for blood results next week but may well ring earlier if still feeling 'odd' and worried about head. Have never seen Rheumatologist or had biopsy etc. Hope you get your rheumy appointment soon and get some help. Keep us informed <ee>

[maria40]

Hi Dobermanlover,

Sorry you seem to be having such a rough time. The reduction plan your doctor suggests does sound very rapid. Also I think that as you need so much cocodamol to be pain free it doesn't sound as though the dosage is effective. Do hope your rheumatology appointment comes soon and perhaps then you can get everything sorted out.

My GP leaves me to my own devices. I have a monthly repeat prescription for prednisolone etc. and have gone down very slowly- 30mg a year ago to 14mg now. I ask for blood tests - and other non-GCA related tests when I need them. Not an ideal situation but at least with the help of this forum and 15 years experience of PMR/GCA I can manage.

I would suggest you see your doctor again and ask if you can reduce more slowly.

I'm not sure whether it's better to have a GP who micro manages or one that is as laissez-faire as mine. Somewhere between the two would be good! Good luck.

[Dobermanlover in reply to maria40]

Thank you Maria, yes I wondered whether I should be on an even higher dose too, but feel very awkward telling the doctors what to do. I don't like taking too much of anything, but the alternative pain is a no go! This is a wonderful site, it gives you so much confidence to stand up for yourself - thank you everybody.