Another question......

.......before I see the rheumatologist pleaseWhen I was diagnosed with 'suspected PMR' back in August I was given 15mg Prednisolone and all the pain went away which, along with raised ESR, brought the diagnosis. I was given a reducing plan to start after 3 weeks and that's when the trouble started as some of you already know. My question is this, could I have been left on 15mg for longer before trying the reduction? Could lowering the dose too soon have led to the ups and down I have had since? Hoping I get some common sense from the rheumatologist to add to what is available here. Thanks x

[DorsetLady PMRGCAuk volunteer]

Short answer -yes and yes.

Longer - 3 weeks is not long enough for everyone -and if it isn’t and symptoms aren’t fully under control, then if you start reducing it’s going to cause issues.

[Hidden in reply to DorsetLady]

Thank you for confirming what I have suspected.

[PMRpro Ambassador]

Almost certainly yes and yes. Either longer at 15 or up it to 20 - 15 is towards the bottom end of the starting range so you are probably starting tapering on a knife edge.

[Hidden in reply to PMRpro]

Hm, had a feeling that was the case.I won't do anything until after my appointment but thank you

[piglette]

My feeling is that one should wait four weeks initially to see if the pred has worked. Also I feel a smaller initial reduction to see if you are a delicate little flower like myself! I was told to drop from 20 to 15 after 3 weeks and I reckon it caused me problems after that.

[NewPMR]

Like most folks I was told by dr to do 15mg for 3 weeks then 12.5 mg for 3 weeks then down to 10mg. However, after reading the info on here, I stayed at 15 for 4 weeks, then 12.5 for a further 4 weeks. I’m now trying 11.25mg for a week before trying 10. Down from 10mg seems to be pretty tricky . It’s confusing because it’s so different for each individual. There is also the ultra slow tapering plan supplied by DL on the forum. All the best

[Hidden in reply to NewPMR]

Thank you, yes, we are all different and one size certainly does not fit all.I will be interested to hear what the rheumatologist has to say next Friday.

[Zebedee44]

It is highly likely that the reduction after three weeks was too soon for you but many of us feel so much improved once on pred that we return to our former lifestyle and PMR gives us a sharp reminder that we must treat it with respect. A 70% reduction in pain is usual and you should look to achieve that after each taper but it is essential that you adjust your activity too.

I was recovering from a hysterectomy when my PMR was finally diagnosed so I was feeling pretty fragile but the pred took away the pain and gave me a big energy boost so I was keen to get back to my active outdoor life with my pony. Big mistake! Later on I found that splitting the dose gave me better mornings and tapering 1mg at a time kept me well.

Will you have someone with you at your appointment on Friday? It’s good to have a second person present to listen to and take on board what’s discussed. You have been getting lots of thoughts from the forum but the Rheumatologist will be the person treating you and it’s better to be informed but open minded when you meet with her. Hopefully she knows her stuff.

[Hidden in reply to Zebedee44]

Thank you so much for sharing. I have noticed that if I do too much one day I can do nothing useful the next, but if I feel ok I find it difficult to rein myself in. I am learning thanks to kind people like yourself on here.My husband is coming to the appointment with me. I am seeing the same lady he saw earlier this year. He speaks very highly of her.

I was tapering 0.5 every 2 weeks but have stopped tapering until I have seen the Rheumatologist.

[piglette in reply to Hidden]

The mantra is rest, rest, rest. PMR is life changing and we need to recognise we have an illness. PMR always wins if we don’t do what it wants! I don’t know if you like gardening, but there is a Facebook group set up from people in Health Unlocked at facebook.com/groups/6288051... you might like. There are some beauiful photos.

[Hidden in reply to piglette]

Thank you. but I am not on FB. I used to be but I got trolled and stalked so I deleted my account. It was a stressful time 🙁

[piglette in reply to Hidden]

No problem. This is actually a small private group. I know how you feel generally about FB though. It is sad as there are some good supportive groups and people are just put off by the trolls.

[Hidden in reply to piglette]

I think once I have seen the Rheumatologist I will have a clearer idea what I am dealing with. The GP registrar diagnosed suspected PMR, then my GP questioned the diagnosis. RA was ruled out but I seem to be symptomatic for PMR based on what I have learned from posts on the forum. I just want a correct diagnosis and advice how to proceed. As I said to my son this morning. I am barely functioning today 😞

[Hidden in reply to piglette]

Also my family find it difficult to understand why I am not taking part in family visits/events. Our holiday in September was not a success and hubby is visiting family tomorrow for a few days and I am staying home 😭

[Nextoneplease in reply to Hidden]

I’m sorry to hear that LadyJayne 😟

It’s happened to me too - although I don’t know which is worse, that or OH staying with me and missing out on opportunities! That makes me feel even worse 🤷‍♀️

[Hidden in reply to Nextoneplease]

Yes I agree. I'm ok on my own, at my own pace. We both need a break from time to time. He plans to visit his cousin in Canada next summer. Our son lives nearby and will help if I need it.

[Nextoneplease in reply to Hidden]

I am often better on my own, even at the cost of loneliness. I find it better than struggling to keep up and feeling I’m holding others back. I guess the trick is to keep opportunities open to join in when we feel up to it 🧘‍♀️xx

[piglette in reply to Hidden]

I know just how you feel. Friends just assume that you can carry on exactly as they do and it is quite difficult to explain that is often not that easy.

[Nextoneplease in reply to piglette]

I find this too piglette x

[Zebedee44]

It is more difficult to taper small amounts with enteric coated tablets which come in 2.5 mg and 1mg and cannot be cut in to smaller pieces. My practice won’t even give me them in 1mg due to the cost of them.

[piglette in reply to Zebedee44]

Surely the enteric coated are cheaper than non coated PLUS another tablet to counteract any stomach problems I would have thought??

[PMRpro Ambassador in reply to piglette]

I suspect not at the price of 1mg ones!! PPIs are pretty cheap.

[piglette in reply to PMRpro]

You may be right, I did not actually bother to check!!

[Zebedee44 in reply to piglette]

Plain 1mg are cheep as chips and hence doled out generously at some practices, but I think 1mg coated are more expensive even than 2.5 mg coated. I now have quite a lot of prescription medication so I reckon my practice has to make any economies they can and I now only get one pack of 2.5mg coated and one pack of 1mg.

[DorsetLady PMRGCAuk volunteer in reply to Zebedee44]

At today’s prices all from same manufacturer-

GR

1mg - £32.49 for 100: 2.5mg - £1.43 for 28

plain

1mg - £0.71 for 28: 2.5mg - £3.94 for 28

[Zebedee44 in reply to DorsetLady]

There is no rhyme nor reason to that, but it fully explains why my practice refuse the 1mg coated.

[DorsetLady PMRGCAuk volunteer in reply to Zebedee44]

I think the 2.5mg GR must be used for something else we aren’t aware of-there is obviously more demand for that dose than the 1mg…

[PMRpro Ambassador in reply to Zebedee44]

It is all scales of economy - there is relatively little demand for 1mg, most dosing of pred is in multiples of 2,5 and 5, short courses that require little or no tapering. The pred itself is cheap but setting up the manufacturing run for the comparitively small numbers of 1mg tablets costs exactly the same as for the 5mg tablets that are rolling off the shelves and bring money back in.

[Rugger in reply to piglette]

Last time I looked, the 1mg gastro-resistant tablets were 32p each!

[blueisgreen]

I believe everyone will have a different outcome. Generally you'll need to reduce slowly, very slowly. And if the lower dose causes pain go back up. I took me 8 years to do it, and I got off altogether after 8 years.

[Hidden in reply to blueisgreen]

Thank you. I am realising this. I am also realising that I cannot control this process, difficult for a lifelong control freak 😞