I thought my consultant was one of the wiser ones even though I've only seen her twice in 3 years....but I now realise she is one of the '2 year brigade!!'
Went to clinic this morning and saw a junior doc first who asked a lot of questions...didn't have my notes in front of him..just a screen with blood results and a blank sheet for him to write on. He thought my B/P was high...bless him!! 155/71 is great for me!! He was concerned with my not being on a bisphosphonate so I explained why. Then he went off to get my consultant.
It was soon obvious that she hadn't read my notes either!!! Which irritated me slightly. Her first comments were about the fact that I had been on steroids for a long time (3 years) and it may be that they were treating some other condition or I had a very stubborn disease???!!!! (Hence the reason I think she is of the 2 year school of thought!) She has suggested a scan to check for inflammation elsewhere...I assume she means a PET scan...but not yet!!
I must admit I only admitted to being on 9mg pred when I am actually on 8mg reducing extremely slowly to 7.5mg. So then she started a very simple explanation of steroid sparing drugs! I had to interrupt her...told her I had tried Azathioprine and Methotrexate and was extremely sensitive to both. If she'd looked at notes she would have surely noticed a GGT of over 600!!!! So she suggested a sub cut injection of Methotrexate but said it was my decision.....I politely declined.
And then the AA chat started...the reasons I should have it etc, even though my DEXA scan was very good last June it may not be in 2 years time. Her suggestion was to have the yearly infusion but, again, she didn't push it. Said I could have time to think about it. Anyone have any thoughts on the infusion?
So, sorry about the long post....basically...it's no change, carry on as before and go back in May. I did start to tell them about this site and the support I'd had as there is very little out there elsewhere but I didn't really get an interested response.
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altywhite
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Oh dear altywhite it’s so dispiriting. It’s almost like the doctor gods have decreed that we can have 2 years of pain relief and any more is an indulgence. Well done for standing your ground. It does sound like you are on your own now - apart from us of course.
I would and am trying to counter damage to my bones with diet Adcal and exercise. I also had an excellent DEXA scan result. I’d be pretty surprised to see much change in 2 years. I hate the idea of being given something that lasts a year and possibly traps you into awful side effects for that year. Do plenty of research and reach an informed decision.
Hi Jane.....yes, apart from you all!! Where would we be without this?
I'm still on the Adcal and K2...and diet..not getting very far with the exercise at the moment though!! Haha! I keep saying wait till spring and it will be a new me!!!
But yes...I'm going to do a lot of reading about the IV infusions and I'll see how I get on with my reduction too.
Thanks for asking. I am trying to get over the hump of 7 mgs to 6 mgs. This is my third serious attempt. I just start to feel generally awful. It’s not really pain or stiffening up it’s just flu- like ill feelings and tiredness to put it mildly. Maybe I should push on through. I want to get to 5 mg which feels like a safe den to me.
That's just how I'm feeling trying to get to 7.5mg.
I've sort of got my own reduction going on...I'm down to 7.5 every 5th day at the mo!! It never ceases to amaze me how such a small alteration can affect you so much!
Nothing wrong with 6 or even 7mgs. Your "generally awful" is most likely to be due to lack of corticosteroid - and forcing the reduction will just make you feel awfuller. As long as you are a under a physiological dose your body will be prodded into catching up if it can. It takes time.
Thanks for that PMRPro, that would make sense. Sarah Mackie doesn’t do the Synacthen Test until you’re on around 4 mgs. My other auto immune disease is Graves so my Adrenals have already had a battering.
Thanks for reassurance. Am at altywhite's level (aiming for 7.5), w SJ's symptoms, apparently getting worse daily. Did go back up to 8 during flu, but didn't help much. Maybe reluctantly go back up a bit more for a bit. Feeling sorry for self today.
Doctors who can't be bothered to even check your notes need a clip round the ear. I KNOW they are time-short - but to tell a patients who has already had liver probs with oral methotrexate that s/c will be fine is really not on! Some poor s*ds would believe her. The s/c is to avoid nausea - not quite the same...
I wonder if it was a PET scan - that's enough pred to make a serious dent in its value.
And what was your dexascan last time? I nearly got the AA chat - I cut it short. If I didn't lose bone density in 7 years of PMR-level pred (mostly above 10mg), the chances of it happening now at 7/8mg are not high. Prove to me I need it and I will consider it.
Thanks PMRpro, I wasn't sure how the sub cut Methotrexate would work anyway.
My dexascan last June was apparently better than the original one I had 2 years previously. I've got the numbers somewhere...I'll see if I can dig them out.
I'll reduce the pred at the rate I'm able to and see where we are in May.
"but I now realise she is one of the '2 year brigade"
Well, I thought my rheumi was real hip till he said "most PMRs last from 8 to 10 months! Am I missing something here?
But at least he has acknowledged that I am not in the" most PMRs" catagory and is being pro active about discovering the problem.
I read a study recently, don't remember where, that gives evidence that PMR can be just a precursor of LVV. Around 40% of participants (all dx of PMR) in the study were found to have extra temporal LVV. That's a lot.
Sorry I don't have enough spoons left to look for the article, but if this is true, then, taking PMR /GCA patients off prednisone while they are still experiencing symptoms of inflammation almost seems like mal practice to me.
Till recently, I thought that with PMR, the prednisone was only good for making your life more bearable while you had the autoimmune disease, that it had no therapeutic value.
Well, it turns out that we aren't just at a higher risk of developing GCA, if we don't already have it, but of developing LVV, if we don't already have it. By not taking predisone while still having symptoms puts us at risk of developing aortitis which is way more serious than the supposed side effects of prednisone. The damage that the inflammation does to the aorta and its branches can become permanent, requiring Stents and surgery. LVV can often be silent, so by the time the symptom occur, the damage could already be done.
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He was concerned with my not being on a bisphosphonate so I explained why. Then he went off to get my consultant. 
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good Rheumy, better Rheumy, tapering & Leflunomide 
