I have an appointment tomorrow with Rheumy who diagnosed me a few weeks ago.
Current status - Am on initial dose of 15mgs pred. Apart from mild spasms in muscle near right shoulder blade, very slight ( compared to agony from thighs pre diagnosis) but constant nagging of thigh muscles, occasional feeling that calf is about to go into cramping spasm and constant tingling in hands and feet, I feel sooooooooooo much better than pre diagnosis. Whilst I don't know what to expect at the appointment I am reluctant to change meds (better the devil you know) at present, as I am due to go on my first ever cruise in two weeks and don't want to upset the apple cart prior to this.
My concern is, given that I have been on initial dose of pred now for a month, do you think Rheumy will immediately want to lower the dose?
Are there any questions I should be asking and is there any important information I should be imparting during this appointment, other than the above?
Many thanks.
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Marilyn1959
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Thank you both for reassuring me that my request to remain as is, is not unreasonable given ' holiday' circumstances. Gives me more confidence for tomorrow.
I wouldn't contemplate reducing whilst on your cruise. I might even secrete emergency supplies of Pred in my luggage in case symptoms really kick off. Just don't overdo waltzing with the Captain.
Have a lovely time!
I am sure your Rheumatologist will show common sense, be firm.
Secrete them I will Jane! But won't promise not to over do it with the captain ( waltzing I mean -tut tut!) especially if he is tall, dark, handsome and fit. May have to consider throwing hubby overboard first though!!!!!!
Will not divulge the above to Rheumy though, as he may consider I have ulterior motive for staying on pred! Ha, ha.
Ah well - the captain on my first cruise (probably last, not my scene at all but it took us where I wanted to go) despite being Greek I think was not particularly tall and on the tubby side. I had no problem resisting the urge to dance the small hours away!
I stayed on my starting dose of 15mg for 2 months - GP initially said 3 months, so I think it's perfectly reasonable to stay as you are until after the cruise.
Have a fantastic time - the captain of my one and only cruise was a tall, handsome, BLONDE - Norwegian!
You really deserve this holiday after the festival. (I used to work at Orsett Hospital many moons ago.)
Hi All, I have some stats!!! Bloods two weeks before private consultation were in norm range. Bloods taken day after consultation but day before starting pred were 80 and CPR 18. Both elevated Rheumy says adding data to support his gut reaction. I know nothing about bloods are these high, or high high????
Despite my protests Rheumy would like me to start by decreasing from 15mgs to 10mgs. He has suggested alternate days approach so that over 48hours I will have an average of 12.5mgs. He was reluctant to do 12.5mgs a day as cutting pills was a bit hit and miss since size of pills difficult to cut with accuracy. He has asked me to give his way a go as I still have a month till my cruise which then lasts 10 days. To stay at 15mgs would mean I would have been on initial dose of 15mgs for 11 / 12 weeks by end of cruise. He has however given me additional pred in prescription for 15mgs per day and also his blessing to increase to 15mgs during the cruise if I need it. (So Sheffield Jane I will be able to dance with the Captain come what may!)
When I queried 5mgs drop, given I still have stiffness in thighs and that I had heard dead slow method was most effective, he said drop usually goes quite smoothly from 15-10 and that we would be looking at 1 mg at a time from 10 and below. I am guessing that if I am having problems on alternate days method I could try a slower approach suggested by Dorset Lady on other posts ie 2 days in a week at 10, increasing to three days the following week etc as I have several weeks before I see Rheumy in Sept?? Your thoughts please.
I will be at 10mgs for three weeks longer than original plan as consultant won't advocate a further drop until I feed back at my next appt with him in September (19th). He also said he will be overseeing my case personally himself, which is good news.
He talked about AA and agreed best way forward was DEXA scan. Also had a chest xray today due to my smoking. He would like me to try Ozemaprole at dinner time to see if this impacts on night time cough (my husband monitors this as I am blissfully unaware as I am asleep!). If it helps then cause is likely to be acid reflux rather than lungs.
I told him about you guys and he proudly pointed to the poster advertising this site and community stating, This is our charity. By using the term 'our' methinks he feels ownership, kinship and he did seem very pleased that I had already joined the forum and was finding it informative and helpful.
No doubt I will be asking you guys for help when things go t**s up. Finger crossed for a smooth sail!!! Ahoy there!
Yes, the ESR is very high, how high the CRP is depends on the units it is measured in, normal range can be less than 1 or less than 10. Some people develop CRP levels of similar numbers to your ESR.
He may think 15 to 10 usually goes simply - by no means always. Time will tell. The switch from 15 to 10 on alternate days is big and many people find such swings uncomfortable. I started with 6 weeks of pred 15/10/5, each for 2 weeks. I didn't have a problem dropping then but since the instructions were 6 weeks and stop I had a flare of symptoms - and it was 4 years before I got below 5 again. Others find if they have a flare it is hard to control the symptoms.
Cutting tablets is inexact is it? What the &*%% difference does it make? You are looking for a LOWER dose, not a specific one, so even if the tablets break so you take 12.48mg one day and and 12.52mg the next it really doesn't matter. It is far less of a swing than his idea of 10/15 on alternate days. Cutting tablets is commonly used here where I live for all sorts of things to cut costs - BP medication and antiarrythmics are two I know about from personal experience. Makes no difference at all.
Are you on ordinary plain white pred tablets? Or coloured 5mg gastro resistant ones? Either way, both 2.5mg tablets and 1mg tablets are available. You can create pretty much any dose down to 2.5mg by combining them appropriately, even "and a half" ones. You must not cut the gastroresistant version but the plain white Prevanti tablets all are supplied with a break line on one side - they are DESIGNED to be broken and you can usually do it with your fingers without even using a pill cutter (obtainable at any chemist).
I know they don't get many pharmacology lectures about dispensing - but looking it up wouldn't hurt. Once you know you know. Or at least - most of us do.
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