Seen the Rheumy, no further forward

[zarzis]

Hi All

Well I went to see my Rheumy last month, and he was not convinced I had GCA or PMR, however he sent me for a Chest XRay, and Ultra Sound on my Kidneys as the Blood Test showed a slight increase, results not known on Ultra Sound yet as only done last Sunday.

He did say that he wanted me to reduce my Preds as quickly as possible, at 2.5Mg every other week and now down to 12.5Mg, since reducing I had headaches and neck pains, which Paracetamol soon dispenses, does anyone have any idea's what may be the problem as my next appointment with the Rhemy is May 10th, and really don't know what to do, any input would be much appreciated.

Kindest regards to all of you very kind on this great site

Peter

[Runrig01]

I was treated for PMR and gca for 5 yr. Had all the classic PMR symptoms, and 18 month later got burning temples, jaw cramping, tender scalp, along with tongue pain and clots and haemorrhages on the tongue. I was seen for the last 2 yr by a PMR/ gca expert. It was only when I mentioned rub pain in the night the tables turned. I was eventually rediagnosef with Ankylosing spondylitis, an inflammatory arthritis, which predominantly affects the spine, but other joints such as shoulder, hip etc. She referred me to a colleague who is world renowned in AS. She told me in women of a certain age (I'm 51 now) AS can present as PMR, and that my head symptoms were due to the high level of inflammation in my neck. This illness normally presents in younger men. I am now on biologic injections and functioning better. I'm not telling you this story saying you have AS, but just that the symptoms can be similar to other illnesses. Good luck, Runrig 😁

[zarzis in reply to Runrig01]

Hi Runrig, Many thanks that at least makes me feel better, as I have had back problems for 40 years, well hopefully they will come to a positive decision on May 10th, Thanks again

Peter

[Runrig01 in reply to zarzis]

You can ask your Rheumy to do an X-ray of the pelvis, looking at sacroiliac joint. Like you I had bad back for years, put it down to working as a nurse on trauma orthopaedic unit. Unlike normal back pain this type improves with activity and is worse with rest. Have a read if you think it describes you mention it to Rheumy, some are narrow minded thinking you have to be young and male.

[PMRpro Ambassador]

The headache and neck pain could be a response to speedy reduction but if they respond to paracetamol they are very unlikely to be PMR or GCA.

[zarzis]

Thanks PMRpro, makes sense thanks

Peter

[Janll]

Even if you don't have PMR or GCA coming off steroids too quickly will cause a wheel spin, so to speak. My Rheumy is also not convinced I have PMR but my adrenals will go crazy if I reduce too quickly......so regardless, go slow with reduction. Advice please from the wiser peops on this forum. No quicker than 10%?????