[Joandublin]

(((((((Jaki)))))))

I'm really sorry to hear how much pain you are in. Im glad the Rheumy's intervention helped somewhat but it still sounds very bad:sad:

The only time I suffered pain at the level you describe was pre-diagnosis days. Thank God I have never had pain as severe as that since. Mostly my pain is managed well enough with painkiller tablets.

I sure hope this flare passes soon for you. What regular medications are you on Jackie? Maybe you need something else at this stage to help control things for you?

Take good care and gentle hugs to you
Joan:rose:

 

[Joandublin]

Hi Jackie

I hadnt heard of this specialist unit before but I did a bit of searching and I think what your Rheumy might mean is a referral to a specialist Rheumatology Unit which is in Our Ladys Hospice, Harolds Cross. Dont panic about the hospice bit! Its simply sited there and is linked to St. Vincents Hospital in Dublin. Perhaps Tralee Hospital and St. Vincents have some kind of referral arrangement?

Of course it might not be this unit and you would need to check with your rheumy exactly what she is intending. Anyway I found a link which explains about the unit and what it does. It specialises in treating various conditions including Lupus and is a multi-disciplinary unit.

If you are no longer responding to the standard medications it seems like your Rheumy is considering some aggressive interventions - perhaps IV Cyclophosphamide? I see from the link below that they also administer Rituximab. You probably have heard of this drug? A number of our members here have had infusions when other medications were no longer working. Its designed to specifically target and wipe out B Cells in the body. Although its not officially approved for Lupus it is used off label. Some of our members have had great success with it. In any event you need to have a good talk with your Rheumy to find out what kind of treatment she is thinking of right now.

Here is the link to the Unit.

http://www.olh.ie/Departments/RheumatologyRehabilitationUnit/

Do keep in touch Jackie and let us know how you are and what is being proposed. I sure hope your pain levels ease up for you :hugbetter: :hugbetter:

Thinking of you and keeping everything crossed for a good outcome. By the way, did you read my reply to your 'Looking for an Irish Lupus Doc' post? There are a couple of links there which might help in your search for a new Rheumy. Let me know if you got it and if not I will link it to you by Private Message.

Hang in there. We are all thinking of you.
Lots of love
Joan:rose: