update following Spanish hospital visit

[Paul76]

Following from my last post I have now returned home from my month in Spain. The sudden onset headaches have disappeared and everything seems back to what is my normal. I did visit my GP for a review and brought her up to date with my Spanish hospital visit. She checked my bloods which are good and is happy for me to continue on the DSNS taper (not sure if I’ve mentioned this before but she had never heard of this taper until I explained it). We both agreed that the headaches in Spain should be treated as a blip as I have been fine for the last few weeks but if it happens again to see her without delay. Upshot of review is that she is very happy for me to self manage and we both agreed that I don’t need to see her for 6 months this time instead of the usual 3 months. I can’t say how good it feels to have an understanding and supportive GP who is open to try different things, especially with pred, instead of sticking to the NHS rules. The only problem is that she is a locum so goodness knows how long she will be available. Once again many thanks for all the helpful advice. This forum is invaluable for building information on this debilitating condition.

[DorsetLady PMRGCAuk volunteer]

Good to hear fingers crossed things continue smoothly.

[PMRpro Ambassador]

She won't have heard of it unless she has read the forum, had another patient using it or was involved with the Leeds study that used it for some patients. There are a very few rheumies in the USA who use something similar to slow the taper steps. But DSNS and DL's simple taper were developed in response to patients struggling to taper. DSNS was based on Ragnar's approach to get below 5mg. He is a Swedish gentleman who was in touch with the lady who started the first English charity in the NE of England. It all started there when we fell into her web