Hi All, having had the most wonderful 'first time' cruise on the Azamara Quest (highly recommend) in August, have returned to Earth with a bit of a bang!
Diagnosed June and on 15mgs initial dose had euphoria outcome from wonder drug pred! Managed about ten days on 12.5mgs before cruise but went to 15mgs during cruise. Have had difficulty going back to 12.5mgs since. On 15mgs less spasms, aches and pains, stiffness but dripping hot flushes, less fatigue.
Am currently on sixth day again at 12.5mgs and lots of muscle spasms and buttocks aches have returned, plus some stiffness but so far haven't had the palpitations I had at 12.5mgs previously. Any ideas about what might cause the palpitations?
The fatigue kicked in at both 15mgs and 20mgs. I am useless until about 2.00pm and by 4pm am knackered! This is really affecting morale at present. My body clock is all over the place sometimes I am going to bed at 5.00pm in the morning!!! Am thinking of taking pred night time rather than in the morning since I am currently at my best from about 7.00pm - 3.00am? Any thoughts? Last bloods (Sept) normal range? - ESR 16 CRP 3.9. On diagnosis bloods normal initially, despite almost no mobility, but shot up to ESR 80 CRP 18 in June, so I may be one whose blood results kick in a bit later?
I am also dismayed about the deterioration with my eyes. Test in June everything fine and eyes healthy. Recent re - test, due to unclear focus and significant blurring of nighttime vision when driving, shows early signs of cataracts and recording 16 on Glucoma test, which optician has said is likely to be steroid induced, as well as sight in both eyes deteriorating by 1.0pt in both eyes. How does this happen in three months!!!
A recent DX scan shows Osteo on one vertebrae in spine, but I have refused Alendronic acid. Stand in Rhemy said there are alternatives that we could discuss on next appointment - any recommendations? I refused as they didn't have my previous results of two DX scans for comparison to measure rate of deterioration, both my mother and sister did not get on with Alendronic Acid and I have seen posts on this site that were not favourable. Any suggestions for alternatives that have worked for you?
Undiagnosed tingling in feet and hands and now some numbness in pelvic area has resulted in doc ordering MRI scan. Since this is early in the morning I am assuming I it will be better if I take meds late at night to make time lying down for scan more comfortable?
Given the above Doc is wondering whether I should take different meds to pred. He has written down a couple of options for me to discuss with Rheumy on next appointment. Excuse the spelling but his handwriting is difficult to read - Methotrexole or Azethioprine (I think!!!) Anyone any experience of these?
On the plus side I started my borough children's choir ( some members will be aware) and, though physically taxing at present, this is my saving grace! Am loving it and so are the children. Have had to curb the rest of work commitments at present. Hopefully things will even out a bit soon.
All advice re any of the above welcome. Many thanks.