A coffee

[Hilmae]

Hi

Is there anyone in the farnham area who would like a coffee and a catch up to talk about our pmr .that sounds so boring maybe just talk about other things as well .

[Celtic PMRGCAuk volunteer]

Hilmae, the Surrey PMR/GCA support group is meeting in Chertsey this morning from 11am to 1pm.....about half an hour's drive from Farnham. Any good? Coffee available.....and lots of people to chat to! You can find all the details on the PMRGCAuk website.

[Hilmae in reply to Celtic]

Thanks . Will try and come if I can get going and drive there .

[Celtic PMRGCAuk volunteer in reply to Hilmae]

See you there if you're able to make it.

[DorsetLady PMRGCAuk volunteer in reply to Hilmae]

Hi Hilmae,

If you managed to attend meeting - hope it helped!

[Kay60]

Hi hope you managed to make it X

[DavidMF]

Hi I live in Farnham, happy to meet for coffee. But when?

[Celtic PMRGCAuk volunteer in reply to DavidMF]

David, see my reply to Hilmay! Great that the forum helps people to get together rather than remain alone on this rather unknown journey. Enjoy the get-together in Farnham.

[Hilmae]

Hi David

Great to find someone in Farnham I can talk to . I am free Thursday afternoons or Tuesday mornings . Any good ?

[Celtic PMRGCAuk volunteer in reply to Hilmae]

Hilmae, you and David might just recognise each other.....you were both at the Surrey group meeting in Chertsey yesterday! Hope you both found the meeting and talk helpful and enjoyed it by the way.

[Hilmae in reply to Celtic]

Hi

I enjoyed the meeting very much and picked up a lot of information . Had a very odd dr appointment today . He said I could get over the pmr with anti inflammatory tablets if I didn't want to take the steroids . Then he said I was silly to meet up with your group because I had the condition so mildly I would be over it soon and as I had a normal esr had no chance of getting GC A .

He didn't convince me as I have been in a lot af pain and can hardly get out of bed some days . Insisted on an appointment with a rheumatologist . Feel I will have to deal with this on my own ,he wouldn't even give me anything to prevent osteoporosis ,just said take as little steroid as possible to get by .

Have to say I came away thinking .......is it me ?

[Celtic PMRGCAuk volunteer in reply to Hilmae]

Hilmae, I don't know about an "odd dr appointment", he sounds like an odd doctor! At least if he wishes to refer you to a rheumatologist, hopefully it will be someone a little more PMR-savvy who knows that 1) a normal ESR does not mean that there is no chance of getting GCA; and 2) that anti-inflammatory tablets rarely do anything for PMR. As for his comment about being "silly" meeting up with the group, he might be interested to know that the Chertsey group was set up at the suggestion of a highly recommended rheumatologist!

As for preventing osteoporosis, the very best thing you can do is ensure you have plenty of calcium-rich foods in your diet daily, especially 'live' yoghurt, milk, cheese and oily fish. A daily walk, as far as your PMR allows, is also one of the best weight-bearing exercises for our bones, along with Tai Chi and Nordic walking.

So, no, it very definitely isn't you, Hilmae.

[Hilmae in reply to Celtic]

Thanks for that . I had to insist on seeing a rheumatologist as I couldn't get him to stop tapping on his computer and look at me . I just thought it was rude . I am off to walk dogs now as you suggest .

[SImon_t]

Hi, I live in Ascot but happy to meet up for a coffee to compare notes.

[Hilmae in reply to SImon_t]

Great Simon . Will let you know when we have a date . See you soon

[Hilmae in reply to SImon_t]

Hi Simon

I am meeting David for coffee tomorrow in Farnham at cafe Nero . 3 pm . It is at bottom of castle street . Hope you can join us .

[DavidMF]

Hi Hilme Good time for me Thursday afternoons. Let me know. David

[Hilmae]

I can do next thurs 30th if that suits . I have to have a blood test tomorrow . Have had a message from Simon n ascot . He would like to join us so when we have a date confirmed I will let him know

[DavidMF]

Hi Unfortunately I can't make next Thursday. Read the book from Dr Kate Gilbert, that will give you all the confidence you'll need. The risk of not taking Steroids as you'll read in the book is that nothing is clearing the blood vessels of inflammation. Your blood results should show a higher than normal reading and the test is to take some steroids and if the aches & pains are relieved with the day, it's more or less confirmation of PMR. Don't struggle make notes print them out and the replies. You shouldn't have to suffer like this. You will also need Adcal tablets to protect the bones and alendronic acid once a week. All the best. Meet up possibly the following Thursday if that fits, 7th after 3.30pm. So much going on. David

[Celtic PMRGCAuk volunteer in reply to DavidMF]

David, patients should have a DEXA bone density scan before being prescribed Alendronic Acid to see whether they actually need it. It can only be taken for five years without a break anyway, so best to save it until it is actually needed. If the DEXA scan shows that the bones are healthy, all that is needed is the Calcium plus Vit D supplement, and this should be taken a few hours apart from the steroids, ie Pred for breakfast and calcium for lunch and dinner. If taken at the same time the calcium can impair the absorption of the Pred.

[DavidMF in reply to Celtic]

Celtic

Thanks for that commentary, I currently take Preds & Adacal at the same time. No mention on when I should take them, so today I change. The Alendronic Acid. Was prescribed immediately I started Preds at 30mg having moved from 15mg start dose for three weeks. I've now been on that for 20 months.

[Celtic PMRGCAuk volunteer in reply to DavidMF]

David, as I mentioned when we spoke, you have managed to successfully get down as far as 9mg in the past, and you should be able to do it again - providing, of course, that all other conditions have been ruled out, for instance late onset rheumatoid arthritis. Unfortunately, it is quite possible to succumb to more than one auto-immune condition at the same time. However, slowly slowly with the reductions, in 0.5mg decrements if necessary, and tapering to each new dose over a period of weeks rather than overnight. Good luck, and if you have never had a DEXA scan, do ask for one.

[DavidMF in reply to Celtic]

Yes I have been down to 9mg Though looking at the dates, this may have been too early July 2015. Then worked on reductions from 15mg eventually getting to 11mg March 2016. But experiencing Hand, Wrist pains and early morning Shoulders, elbow and reducing energy levels. Back up to 15mg then reducing to 12.5mg, which maybe too much too quick. Currently on 18.5mg, will reduce another 1mg in a weeks time, not feeling too bad, but very easy to perspire, Weather doesn't help, just confuses. Will work on doing it slowly, see if the change of Adcal makes any difference. Still to finish Kate's book, I will write to her it's a masterpiece.

[Celtic PMRGCAuk volunteer in reply to DavidMF]

I agree, Kate's book is something no 'newbie' to PMR/GCA should be without. Wish it had been around when I was diagnosed!

[Hilmae]

Thanks for that David . I have been reading the Kate Gilbert book . I think that is what got on my dr s nerves and he didn't like all my questions . Would be good to go for 7th .keep in touch

[DavidMF in reply to Hilmae]

Hilme

7th is in my diary. It's always very difficult to debate / influence a Dr. They firstly are under such time constraints. So work out how you can present your case in an efficient way, without offending or challenging their understanding or beliefs.

The facts are the facts. A simple list of how you feel currently. What has changed since your last visit and change of medication. Have you a list of your tablet regime by date and effect. Using reference books, or literature can help, but how can you help by just presenting the section briefly. Can you leave some documentation behind for them to ready later A4 at the most. This also relates to the rheumatologist. They will appreciate a patient who is trying hard to be clear, precise and give them a better understanding of what you are going through. Hopefully this isn't sounding too daunting.

In the old adage fail to Prepare is to Prepare to Fail. You will also find it helps your nerves on the day, meeting a new Dr can be a very stressful occasion and one where after leaving, you start to remember all the things you wanted to say.

[Hilmae in reply to DavidMF]

Thanks David

I think the fact that he wouldn't look up from his computer while I was talking got my back up and it went downhill from there . Will take your advice next time . I need to stay calm !

Won't see that dr again (he won't see me ). Ha ha

[DavidMF]

Coffee meet up still on?? I can make tomorrow afternoon. Thursday 7th. Where should we meet? 3.00pm onwards.

[Hilmae]

Yes David lovely . 3oclock is fine . I don't mind at all . How about Nero at the bottom of castle street ?

[Hilmae]

Did you get message yesterday David . I will be at cafe Nero 3 o'clock . Hope to see you ther e.

[SImon_t]

Hi. Sorry I have only just picked up the message. Hope your meeting went well. Happy to join next time.

Simon.