I got to see the Rheumatologist the other day. My GP had agreed that after 2½ years I’m going backwards (back to my 10mg pred dose of 2 years ago and the worst pain, weakness and stiffness in my legs ever) and had asked for a quick response which was forthcoming. I took my long-suffering wife as reinforcements, expecting the possibility of awkwardness. So with mildly raised hopes for some helpful advice about managing our frustrating condition and a chance to share my worries about the on-going side effects (for one I’m now also pre-diabetic) I was met with scepticism and mild hostility on having the temerity to question her medical orthodoxy. One of my main concerns, which I’ve shared with you good folks before, is about getting some thought-through medical advice on a “safe” pred dose for a patient with Glaucoma, and especially in the light of being told the week before by an eye Dr. that my current daily intake of 10mg is “high” for someone like me. Absolutely zilch on this one!
However, the Rheumatologist, in the best traditions of the scientific medical sceptic who must nevertheless be seen to be “doing something”, did at least poke my legs, and then said “right my lad (or words to this effect) what we need is more tests as you are clearly atypical since you’ve been like this for 2½ years and if you’d got PMR it would have burnt out by now”. You could see the nose begin to flare and the back stiffen (well maybe that’s a little strong….) when we protested “politely of course” that my Forum friends wouldn’t agree with that view – “Yeh” she says “I’m aware of THE FORUM” – you could tell what she was thinking alright (another b***** smart arse who thinks he knows better than us experts). And “most of those who think they have PMR for more than 2 years haven’t got it.” So having graciously donated my urine sample I went off to have another blood test (despite only having had one 6 weeks ago) and Xrays to left knee, with the joy to follow of an MRI scan and a nerve test involving needles and electrodes. As you can tell the promise of all this action has really made me feel confident about the future!
So, off I go, and while lounging in the blood nurse’s chair admiring her exquisitely manicured nails and basking in her gentle touch, the rheumy nips in to say “I’m going to get your hips Xrayed too”. Gosh, my hips will be overjoyed at the attention! So, I’ve now got a chance to ask her about increasing the pred., so in I dive with “how about an increase to 12mg if I promise to begin reducing as soon as I’ve got “it” under control”. “Fine” she says and hurries off. No word about “don’t stay on that dose too long”, or “let me know how it goes”, or “don’t forget to tell your eye surgeon about the increase in pred” or even “do drop in for a cup of tea sometime as I really enjoyed our chat this morning”. I think she’s hoping I’m going to move to Italy then she can forget all about me!!!
Oh yes, I nearly forgot - I’m cautiously optimistic that, having been on 12mg for 2 days, the symptoms are more manageable, so I’ll give it a week and if things are staying better will then begin another slow slow slow reduction. What do you think? Or perhaps she’s right and they’ll find something else that is more treatable.
Believe me at times like this I get such comfort from knowing I’m not alone thanks to you all. I could write a book about medical paranoia!
Deadline to reduce to 7.5 mg!
Feeling Supported
My ACTH Stimulation test is to have 3 blood draws
Posted last week for advice. Rheumy nurse's opinion on GCA symptoms - go on - you know you need a laugh.
How much pain? Vs how much pred?
