Tapering slowly: I have alerted my Rheumatologist... - PMRGCAuk

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Tapering slowly

ChinaWuntoo profile image
29 Replies

I have alerted my Rheumatologist and GP to the fact that I would like to reduce from 10mg to 9mgs over a seven week period (thanks DorsetLady) when the time comes. I already have been on 10mg for 17 weeks. I think my GP will agree and I will argue my case with the Rheumy when we speak in early September.

My question is: will my GP (who will actually tell the pharmacist what I need, I assume) be able to work out and communicate how many 5mg and how many 1mg pills I need over a seven week period? Or should I suggest the numbers to him?

Note: This is not as stupid a question as some may think! I have little faith in my GP’s ability to do ‘paper-work’.

Perhaps the Rheumy will have a formula that GP’s understand, I don’t know.

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ChinaWuntoo profile image
ChinaWuntoo
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29 Replies
Marijo1951 profile image
Marijo1951

I advise you to spell out exactly what your requirements are even if it seems very basic arithmetic. I say this because I had to make a special appointment with one of my GPs to clarify that as I was on 8 mg at the time, I needed more than double the number of 1 mg to 5 mg tablets. When I put in requests for a pred prescription, they had just kept sending me 5 mg tablets. The pharmacist called them and tried to put it right but it didn't work. He actually gave me the equivalent of part of the prescription in 1 mg tablets, because I'd run out of them but had an overstock of 5 mg. I don't know if he was doing something against the rules, but I was very grateful to him.

ChinaWuntoo profile image
ChinaWuntoo in reply to Marijo1951

Thanks.

That's my fear! Yesterday the pharmacist told me not to order any more pills (I have other health challkenges) as the GP had keep sending so many prescriptions. And at my recent monthly blood tests I received one form by hand and another through the post. See what I mean by paperwork? And that's not all but I won't bore you.

I can find a way of telling him gently if the rheumatologist doesn't spell it out.

Lakesider profile image
Lakesider in reply to Marijo1951

I have 5mg and1mg on my repeat prescription list and order the in boxes of 3 when I need them It works well for me. It hadn’t occurred to me to do anything else. My practice works that way for all my medications

Marijo1951 profile image
Marijo1951 in reply to Lakesider

I've sorted it out now but it just seemed ridiculous that I actually had to go in and talk to a doctor to get it put right. I still have a problem with 5 mg folic acid which I take because I'm on methotrexate. For the first two months I took it once a week, then the rheumatologist increased in to 5 times per week and included this detail in the letter she sent to the GPs. However much I ask for an adequate number of folic acid tablets and refer them to the letter, they will still only prescribe me 5 tablets for a month. Of course folic acid is as cheap as chips but in the UK at least the standard over the counter tablet is less than 0.5 mg. I've taken to buying 5 mg tablets online just because it's less trouble.

Lakesider profile image
Lakesider in reply to Marijo1951

I’ve been prescribed methotrexate and folic acid on Monday this week. My dosage of folic acid is 5mg 6 days a week when I’m not taking Methotrexate

Marijo1951 profile image
Marijo1951 in reply to Lakesider

I hope your GPs are more sensible than mine when it comes to getting a repeat prescription.

ChinaWuntoo profile image
ChinaWuntoo in reply to Marijo1951

My most recent exchange with my GP - I had to stop a medication due to side effects. It is what some people think is an essential for those on Pred. My GP gave me a prescription for something similar. The pharmacy told me they only had 10 pills and wouldn't be able to get any more and to ask GP for an alternative. (Following me so far?) I then looked it up on the web and discovered that it has been banned in USA.

Marijo1951 profile image
Marijo1951 in reply to ChinaWuntoo

Priceless! My youngest daughter had asthma as a child. I took her to the GP for some ailment (I forget which), he prescribed something and I asked if he could put a new asthma inhaler on the prescription as she was due a new one. When we took the prescription to the pharmacy, the pharmacist came out and told me that the medication that the GP had prescribed was strictly contraindicated for people with asthma!

Koalajane profile image
Koalajane

My doctor gave me a repeat prescription for 28 5mg tablets and 100 1mg tablets. Now I am on 4.5mg a day I get what I need when I need it

ChinaWuntoo profile image
ChinaWuntoo in reply to Koalajane

That sounds a sensible way of doing it but .... I'll wait and see.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

If you initially ask for a prescription of 10mg per day - but made up of 1 x 5mg and 5 x 1mg - and enough to cover 8 weeks - i.e 2 monthly prescriptions.

The pharmacist should work it out, but it should be -

For 1 months supply -

1 box of 5mg;

5 boxes of 1mg

Most boxes contain 28 tablets.

Then next time adjust prescription according, but it never hurts to have a few spare in case required.

ChinaWuntoo profile image
ChinaWuntoo in reply to DorsetLady

Ah, that sounds good. I had wondered if there was a way of getting some spares - for later if I get a flare. I'll try that - but it's up to the GP. It would be much simpler than telling him how I work out exactly what I would need.

Thanks.

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Except only one month has 28 days ...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Yes.., never sure why they don’t do boxes of 30!

But prescriptions can be raised every 4 weeks rather than a specific date in the month - which would be thrown out the window in months with 31 days! 😳

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Yes - but the time of the month slides! It confuses the medics ...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

....don’t most things😳

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

True ...

scats profile image
scats

I used to be sent 100 tabs of whichever I asked for. Last month it was changed to one packet of each, quite a difference. I order on line and there is a box for special requests so I used that to explain how many I was taking and please could have extra 1mg to cover this. Our chemist delivers and they arrived seperately the day after the others.

bakingD profile image
bakingD

I always make sure I have extra in the cupboard just in case ieI let the dr know I need a fresh supply long before it really is needed-

HamishPMR profile image
HamishPMR

As a retired pharmacist I can tell you that the GPs to often go to their computer and press a button. You hope you get the correct Rxs. Much better idea is to ask him to individually write prescriptions for what you require. " Doctor please may I have one prescription for 1mg tablets and another for 5mg tablets". Your GP sometimes has to be lead.

Marijo1951 profile image
Marijo1951 in reply to HamishPMR

I've tried explaining things in detail, quoted the date of the consultant's letter when my dosage was increased but nothing works except making an appointment and actually seeing a doctor to explain my needs in person or giving up and buying stuff online. But what you say about just pressing a button makes a lot of sense. Recently when I couldn't go out myself, I asked if the prescription could be sent to a pharmacist more convenient for my daughter who was picking it up for me. I gave the full address and post code, but it still went to my usual pharmacy.

AussieMel profile image
AussieMel

My Rheumy just gives me a prescription for both 5mg and 1mg so I can taper in slower increments.

Dontwannabesick profile image
Dontwannabesick

When I started this journey I did the maths and wrote down how many of each dose I needed. The doctor said "thank you very much for doing this".

Pixix profile image
Pixix

Guess I’m lucky, my doctor started ’giving’ me 1mg & 5mg each month since I was on 15mg so that by the time I got to 9mg (this month, I was diagnosed in December last year) I had lots & lots of each! He said to order 1mg & 5mg each month for six months & it should give me enough to make any combination! All have good expiry dates still, & he’s right, it’s working! A bit of forethought goes a long way! I found going from 11mg to 10mg the hardest so far, it took 2 months. Going from 10mg to 9mg has been an unpleasant experience, but without a real major flare up & I think my body has accepted it now! I’m due my monthly half hour chat re doses in 10 days time, &, at that time he always asks me if I need any extra to the repeat prescription amount. Good luck!

ChinaWuntoo profile image
ChinaWuntoo in reply to Pixix

Seems you are lucky. I fear my GP, like many GPs, is not up-to-speed on PMR and also he is not good at admin/paper work. But he's a nice man and I don't want to fall out with him. Fortunately he listens to my 'advice'! So I think I will be ok if I put things carefully. Part of my problem is that I don't understand the protocol between consultants and GP's - who is the boss and who is responsible? Guess it differs from individual to individual. And it would help if I could meet the rheumatologist face to face, of course.

In the end, I may be worrying too much as I suspect that, with Dontwannabesick, my GP will be grateful for the numbers to be given to him.

Pixix profile image
Pixix in reply to ChinaWuntoo

Yes, I think I’m very lucky! I have other underlying conditionings which mean I shield during winter so when diagnosed in December I definitely didn’t want to go near a hospital! I had the choice of seeing a rheumatologist or staying with my gp for treatment. I chose to stick with my gp & he’s been an excellent help & his knowledge & guidance are great! Good luck, S x

Jackoh profile image
Jackoh in reply to Pixix

Try just going down in halves from 10 mg. You just need a good pill cutter for the 1 mg. This might make it easier for you.

Pixix profile image
Pixix in reply to Jackoh

Thanks. Yes, I have a pill splitter & did consider it. But I’m settled at 9mg now. I may need to go for just half a mg reduction next, though, & will keep it in mind, thanks! S x

Maryis80 profile image
Maryis80

My rheumy told me back in February, to reduce by 1mg per month. In fact I have been doing slow taper and am now down to 6mg, due to start reducing to 5 next week. My gp did ring a couple of months back to enquire what was happening with PMR as I usually see the rheumy and he was quite happy and said "he's the expert". at the present time our surgery are giving two months worth of prescriptions at a time and I think I have enough Pred to last until about Christmas!

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