Dan the Pharmacist had a chuckle...

[Scotte]

Pharmacist had a chuckle when he received this from my Rheumy... created a spreadsheet for his own reference... ordering in balance of my 7.5month supply... 686 1mg pills...

[Soraya_PMR]

Rheum expects you to be done and dusted by late June? Less than a year? Good luck with that.

I seriously hope you succeed, but don’t be too disappointed if you don’t. You’re entering the really s-l-o-w phase, and that ‘script doesn’t give you much wiggle room.

[Hidden]

You are lucky.... my rhymey wanted me to go from 15mg to 0mg in TWO WEEKS.... I did it in 4 weeks.... and it was hell.

[HeronNS in reply to Hidden]

Why? Did he think you'd been misdiagnosed? And how long had you been on pred?

[Scotte in reply to HeronNS]

Not at all... he couldn't count that high and had to order in more of that expensive drug we're on... Pharmacist was awesome... he asked if i wanted his spreadsheet...

[Hidden in reply to HeronNS]

Yes She did...far too young for PMR apparently....and been on pred six months

[Soraya_PMR in reply to Hidden]

MeggieKy, may one ask how old you are? What’s your diagnosis now? Are you back on pred?

[Hidden in reply to Soraya_PMR]

Morning Soraya_PMR

I am 57, I have some inflammation in my blood (but not severe enough to treat apparently) and have been diagnosed in June this year with fibromyalgia which has many overlapping symptoms with PMR and no cure so really shouldn’t be on this forum now. X

[Hidden in reply to Hidden]

Did pred reduce symptoms? I have PMR and was diagnosed with fibro at least 15 years ago. Pred made significant difference to pmr pains and stiffness that I had assumed was fibro getting worse. But obvious difference when I started pred with the first day.

[Hidden in reply to Hidden]

Hi Poopadoop

Initially on 20mg pred was very effective then on15mg which wasn’t rheumy used this and my age to dismiss claims of PMR and insisted I had fibromyalgia which I think was a just a convenient label so she could discharge me.

Often wondered if you could have both PMR and fibromyalgia now I know thanks.

[Hidden in reply to Hidden]

I think there are a few of us. Also the general protocol these days can be dose of up to 25mg for some.

[Hidden in reply to Hidden]

Oh and was 55years old.

[Soraya_PMR in reply to Hidden]

I am 57. I have no inflammatory markers! But I have PMR. (One of the 20%)

I did not think fibro caused inflammatory markers. Did you respond well to pred? because fibro doesn’t.

[Hidden in reply to Soraya_PMR]

My rheumy said it must be because I had an infection...,,, none that anybody could detect so again dismissed . my pain markers are not as high as some of the figures quoted on this forum but higher than normal no explanation given. Your diagnosis must have been hard to accept.

I’m not sure about the PMR now as I generally feel better off pred and yes you are right fibromyalgia does not show pain markers. I hope you’re managing to be pain free.

[Woodiesmum in reply to Hidden]

I am 53 and been on pred over a year and went from 60 to 10 got a scan on my head for GCA anc found I had loads of thickening still x

So back up and o am on 30 mg still x my pmr isn’t good either x but my own doctors had done nothing from 2009 x and like loads of others been told I was too young x what a load of rubbish x

One consultant whom I asked for second opinion sent a letter saying I had migraine and needed to see a Nerospecialist

Omg how clever is he diagnosed me without seeing me x well he got a shock cos when I got tests back with all the proof I needed I sent a copy to him and said don’t ever let any of your patients suffer like I have too x

I am so angry x do they think we like living like this x sorry about rant but having s bad day xx

[Scotte in reply to Hidden]

I can't give you a thumbs down... are you doing OK!! Can't imagine you are... my Rheumy has ideas but he is very open to what I have to say...

[SheffieldJane]

Oh dear Scotte, there is no room in there for Scotte the individual and the stresses and strains of day to day life.

Perhaps I could be a Rheumie, it looks quite easy,! Next please,

I would be inclined to have this as a rough guide but if I am not feeling too good for several days I would pause things and er ring him up.

Good luck. The disease does last on average between 2 and 4 years - treated sensitively and diagnosed early.

[Scotte]

Sorry for the confusion... my Rheumy already knows I am me!!! ... the joke was on the Pharmacist... on my first visit to the Rheumy he said he has only had 20 cases of PMR.

Most were done between 3 -9 months (yah right). I'm at 8 ( 4 since being diagnosed in August). His taper is always fairly quick, but he never objects if I bump it up according to how I feel. (and I have had 2 flares due to over excursion when I was feeling awesome 12.5 and 10). I count spoons now!

The nice thing with the "script" is that they are in 1mg tablets. The bad thing is I have to get out my paring knife to make a 0.5mg tablet ... as we all know and I have learned we taper when our body is ready. The script is for the next 8 months... only time will tell!!

Thanks to this forum I do what is right for me... with help from YOU!

Scotte

[DorsetLady PMRGCAuk volunteer in reply to Scotte]

Hi,

Go back to the pharmacy and buy a pill cutter - safer than a knife!

[PMRpro Ambassador in reply to DorsetLady]

Saves wasting halves too!!!!

[Mick19 in reply to Scotte]

I use a single edge razor blade, it works better than the pill cutter.

[PMRpro Ambassador in reply to Mick19]

The pill cutter has the advantage that when travelling by plane with just hand luggage you can still take it with you!

[SheffieldJane]

Ah! Got you. Go well! (😀)

[markbenjamin57]

Hi Scott

Clearly, your Rheumy is highly educated and intelligent since I notice that his Script is written in joined-up characters. And.. his punctuation is pretty good too!

As for getting a Pill Cutter to you over there at your remote location, it's a bit complicated but here goes:

Since you live in a British colony across the pond, this is the best solution...

Firstly I've looked- up the sailing vessel "Nonsuch". My understanding is that she is built for sailing the icey waters and should have no problems navigating the St. Lawrence seaway into Montreal during the winter months.

Upon arrival in Montreal, the Captain has promised to find a guy named Jacques, he is a well know Coureur de Bois. There are many Jacques in the city so it should not be too difficult. Jacques has agreed to carry the parcel from Montreal to Fort York located in the city of Toronto.

Once at Fort York, Jacques has a friend who is a Voyageur for the Hudson Bay Company. Anthony, his friend, has agreed to make the final leg of the journey around the Great Lakes, across the Great Prairies into the foothills of the Rocky Mountain. Anthony will drop the package at Fort Calgary, on the Bow River. Anthony will continue his journey north to Edmonton from there. Fort Calgary has agreed to hold the package until the spring thaw, at which time you will be able to navigate the Bow in your canoe and collect it. Please bring some ID (an Eagle feather will do).

As for using the pill cutter (when it arrives): I don't recommend chopping all 686 1 mg pills into tiny fragments in one frenzied assault. This could take several days, is likely to damage your eyesight and drive you crazy in the process. Also, the millions of microscopic particles of synthetic Cortisol released in the chopping process are likely produce an atmospheric cloud in your kitchen equivalent to that released by a volcanic eruption - but even more dangerous due to its density.

MB

[BonnyQuine in reply to markbenjamin57]

What a weird thread! Esp this bit = just surreal. Has succeeded in raising a grin though. Have you been watching 'The West' on PBS?

[suzy1959]

Brilliant MB!

To MeggieKY,

Just to let you know that I was 52 when I got PMR, nearly 6 years ago. The main difference between PMR and Fibro is inflammation in PMR and, even if you don't have inflammatory markers, your response to Pred. is the best determinant of PMR. Do not believe all that Rheumys may tell you, they don't always know- I have learnt this the hard way!

[markbenjamin57 in reply to suzy1959]

Thanks suzy, always a pleasure to raise a giggle or two here in between the serious stuff. I know my place..!

BTW, I agree with you about your other comments...

[Nannie-C]

Trust he is giving you a mix of 5, 2.5 and 1 mgs tabs which would of course mean you take less pills x

[Carrollee]

Hi scotte. Am wondering why you don't have a prescription to include 5mg tablets as well. Much easier to mix and match with them, 7mg would = 1x5mg + 2x1mg instead of 7x1mg (3 tablets instead of 7 in other words). It's easy to break the 5mg to include 21/2's in the equation as its bigger and has a deep groove across it, I break with my fingers but would be easy with a knife etc. All the best cc 🤗