Think I am having a spike should I hold tight?

[Kingswaywhite]

Hi all

First time posting here but very impressed with the knowledge and support available.

I was diagnosed with PMR in Feb this year but had symptoms going back to May the previous year.

Dr put me on 20mg Pred and all my pains went away and I have tapered down to 10mg recently and been ok but sometimes need an extra boost and take 12.5mg if I have pushed myself a little too hard physically and for the best part lead a normal active life.

However since Friday last week have had my first dose of man flu for 2 years and all my pains have come back in my legs and hips, currently arms and shoulders are operating normally. Should I ride out the man flu and stay on my 10.5 with occasional 12.5 boost or increase in the short term to counter balance the extra stress on my body currently?

Many thanks in advance for all your help and advice.

Steve

[DorsetLady PMRGCAuk volunteer]

Steve,

Actually rather than dipping in and out with 12.5mg it might be sensible to actually go back to that dose for at least a week, maybe longer.

Even before man-flu, it sounds as if 10mg wasn't enough - and to get the best from the medication you need to be at a steady dose, not adding in extra as and when. Plus you are not rushing to get to zero, you are trying to find the lowest dose that gives you the same relief as the initial dose did.

Although the taper from 12.5mg to 10mg is recognised in the guidelines, it doesn't work for everyone...personally I would try either a 1mg drop (get 1mg tabs on prescription if not already, you will need them one you get below 10mg) or in the interim cut your 2.5mg tablet - provided it's the plain uncoated white variety -in half.

I know you want to try and live as normal a life you can, but you do need remember you have an underlying systemic illness which is not cured by the steroids, they are only controlling the inflammation aspect of the illness.

Pushing yourself too hard is counterintuitive... ease off a little, and enjoy life without pain...it can be done, and it's not being soft (as some men think).

Trust you have had/ are booked in for flu vaccine!

[123-go in reply to DorsetLady]

Well said!

[Kingswaywhite in reply to DorsetLady]

Flu vaccine booked for next week it’s my first one I always considered myself too young for one 🤗

[DorsetLady PMRGCAuk volunteer in reply to Kingswaywhite]

You can still consider yourself too young if you like (don’t we all😉) - but this year, it’s a must!

My grandchildren - 14 & 15 had theirs last week!

[SheffieldJane]

I see your thinking in raising your dose to 12.5 when you’ve overdone it. Far better to avoid overdoing it. The body doesn’t respond well to the yo yo effect.There are hideous weird bugs around at the moment. Man flu implies that you are over complaining. I bet you are not. DorsetLady has given you sound advice which I have just seen.

[Nextoneplease]

Hi Kingswaywhite 😊

I agree with DorsetLady and SheffieldJane, I bet you’re not milking the man flu, there are some horrible bugs about 😟 Also you are perhaps overdoing things in general….? The inflammation is still there unfortunately, the steroids are helping your body to manage it but you have to do your part by finding the best balance for you between rest and activity.

So in short, yes, I’d say go back up to 12.5 for a while and then consider dropping. Personally I found the drop from 15 to 12.5 too much, and have been dropping by 1mg or even 0.5mg each three weeks ( am now at 12.5).

Also have you seen the FAQs and pinned posts on here referring to Tapering Plans and Sick Day Rules?

Definitely worth a look!

All the best 😊

Nextoneplease x

[piglette]

I have found that if you try and ride it out PMR will win. You will find you need to increase your dose to say 12.5mg and stay there until you are sure you are OK. Then you can start to reduce slowly.

[Kingswaywhite]

Thanks for your replies very helpful and insightful. I only have the 2.5 doses of Pred and it’s the stomach friendly type so will have to have a chat with the surgery as to how to handle this. The last time I got my prescription they gave me a mixture of 5mg and 2.5 and charged me twice for the prescription 😬 is this normal in the U.K.?

I have felt no real pain like I had before taking Pred and tapered down to 12.5 without any issues. It’s the drop from 12.5 to 10 that appears to put me close to the line, and I get slight aches after a few days, and I take a couple of days at 12.5 and feel fine again.

Will get some smaller doses and try a more gradual taper once I get over this man flu. 😁

I am luckier than most after running 30 miles a week for years I had real problems walking down my stairs at the start of the year, but now am able to do all the things I could do before but on a dose of 12.5 Pred without any issues so I am grateful for that.

Thanks for your help / responses and wish you all well with your own personal PMR battles. 😘

[Nextoneplease in reply to Kingswaywhite]

Thanks for your positive reply and I’m glad you’re doing so well (apart from blips!) 👍

Afraid I don’t know whether it’s normal to be charged twice for different doses of the same medication - I’m old enough to have had ‘free’ prescriptions for many years!

Do they still do prepayment for regular prescriptions? That used to work out cheaper but it may all be different now!

Keep up the rest and fluids and I hope you’re over man flu soon x

[DorsetLady PMRGCAuk volunteer in reply to Kingswaywhite]

Paying double for prescriptions is a bit naughty…but maybe depends on how GP wrote it up. If the pharmacy chopped and changed because of their shortage of one size, then, no, not on.

As suggested look into prepaid - nhs.uk/nhs-services/prescri...

[PMRpro Ambassador in reply to DorsetLady]

No - different doses of the same substance have always been counted as different things.

[PMRpro Ambassador in reply to Kingswaywhite]

You pay a prescription fee for each different medication on the piece of paper - and that includes different doses of the same substance. There are also 1mg enteric coated pred - there was a shortage for a while as they ran down the old stock when manufacturing moved from one company to another. Be persistent and they will be able to get them!

[NickWarwick]

There are wiser word here on your dosage regime than i could offer, but a pre-paid annual prescription charge is a no-brainer for me. About £100 for 12 months. Nick

[Kingswaywhite]

Just looked into the annual subscription which will definitely be a saving on my current drug regimen and will work out even better as I will need mixed doses of Pred for my taper thanks to you all 🙏