Hi I am based in Ireland. Been under a doctors care since starting on my PMR journey. Planning ahead for next year I am considering changing Doctor as am not happy with her recent advice. Has anyone on here any recommendations or good experiences from Ireland. Doctor or Rheumatologist?
Thanks
Where in Ireland?
I am in west of Ireland
I think there is one person on the forum in Ireland but I don't know who it is/was. There is a support group in N. Ireland which meets in Belfast but I presume that doesn't help you?
I have a friend with PMR in Dublin on another forum. I have asked her if she can suggest anyone.
My friend in Dublin suggests that the best place overall is the Galway Clinic. There is a consultant Rheumatologist there called Ronan Kavanagh who mentions PMR in his brief. That is private so we realise that may not be an option. In which case she says
"I do realise that I'm suggesting a Private Hospital/Clinic and therefore fees are involved. Based on my experience with a Dublin Private Clinic, costs are in the region of: DXA apx.E100. Consultation with consultant apx. E200 for first apt. and E130 thereafter.
If fees are an issue, check out the Galway University Hospital, Rheumatology Dept. - but waiting lists are a big issue."
Can I ask why you are unhappy with the advice?
Unhappy with advice because inflammation has increased but Doc is insisting bloods are normal. Getting bloods done again third week in January which will be very relevant in seeing if ESR and CRP are still on increase? CRP had increased from 3 in August to 8 in Dec
I am on a very low dose tapering from1 1/4 to 1. She wants me to pick up speed and get off steroids even at such a low dose
My energy reserves are very low but I am working full time and just had a stressful period ar work which hasn't helped. Have right knee and right shoulder issues so don't know if they are involved in inflammation increase. My confidence in her is fading and so I think I need to have a second opinion especially if inflammation has increased at next bloods. So planning ahead,!
It isn't the absolute figures that matter - it is the trend if you do see levels starting to increase.
I don't know about the Irish system - can your GP not continue to manage you? You are on such a low dose she is very silly to risk a flare like that.
Has she seen this paper:
medpagetoday.com/rheumatolo...
This is just a link to a media release but it is a good one.
I live in Dublin and my Rheumy finished the pred at 18 months - but that was me asking for extensions at time from the tapering because I was so sore - she took me off the pred as I say with disastrous results and my GP put me back on it to do a slower taper. The Rheumy was getting me off the pred at 12 months - less actually - going on the blood markers. So now my GP is monitoring the meds and I am now at 1 mg every day and I will take my time on that as much as I HATE the pred. As PMRpro says - maybe your GP could help? I certainly wouldn't be going back to that particular rheumatologist if my markers go up again.
Can I ask how do you feel at 1mg
could be dodgy. Have been on 2mg then I alternated 2/1 and now at 1mg - I still get some stiffness and pain - but I don't know really will it be different for a long time. If I can survive on this I will - my stomach has been very bad on the pred. That all depends too on my GP allowing me to continue on it for a while!! I would like to say the condition is "gone" - but if I'm being honest - I don't think it is - when I was off the pred for 4 weeks - just a couple of months ago I was in a really really bad state. Couldn't use my arms with the pain. Its a bit scary how quick everything reverts!
Do you get enteric coated pred in Ireland? Makes a major difference to stomachs.
I asked about that - but was told we couldn't get the lower strength with the coating. Only the other ones available here.
Until August last year only 5 and 2.5mg versions were available anywhere as 1mg wasn't manufactured - might be worth checking with a pharmacist who can look it up if they don't know about it:
Yes we get 5mg and 2.5 mg coated pred.
Enquire about 1mg e/c - they are available:
Hi Irldino, My blood tests always show as normal.My Gp is quite good at referring me for them but she says she doesn't think I have PMR anymore because of the results.My body says otherwise! I'm due to see a rheumi soon hopefully! I'm on 2mg.
i've got 28 x 1mg and some 2.5mgs.
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