Popoy

[Popoy]

I was diagnosed with GCA and PMR in Oct 2021 I started on 40mg and now on 4mg. I am experiencing painful knee joint , loss of muscle tone and general tiredness. I have requested a DEX scan but am still waiting. I am experiencing difficulty in obtaining gastro resistant 1mg pred from my doctor and wonder why this is. Is anyone else having this problem.

[DorsetLady PMRGCAuk volunteer]

Hi,

Would say the tiredness is probably due to adrenals struggling - see this link [from the FAQs section] -

healthunlocked.com/pmrgcauk...

Knee pain may be PMR [albeit that is usually bilateral], but could be osteoarthritis or just life [most pains are masked at higher doses of pred]. Might be worth requesting an X-ray.

As for shortage of 1mg GR tablets-seems to happen quite regularly - supplies from China, Brexit and Covid all have taken their toll on goods of all sorts.

If you had entitled your post - ‘shortage of 1mg tablets’ or similar, you would have got a few related posts… here is just one from 11 months ago a - but it’s a recurring theme-

healthunlocked.com/pmrgcauk...

For future reference -Using your name as a title doesn’t convey what your question is - so please include subject in title - thanks…

healthunlocked.com/pmrgcauk...

[piglette]

You have actually managed to get to 4mg quite quickly. As DorsetLady says the tiredness could be due to the adrenal glands, I was like a zombie due to my adrenals wanting to carry on lazing around!! Also steroids can suppress pains such as osteo arthritis, but as we reduce we are then more aware of these other pains. I found taking reductions really slowly and not reducing until the tiredness has improved a bit pays off.

[AshPen9]

Gastro resistant 1mg tablets are very expensive Popoy, much more so than the 2.5mg and 5mg ones for some reason. Due to this, they are blacklistedon the NHS. There is only one GP at our practice who will give me a prescription for them, and even there there are sometimes supply problems. These don't appear to be caused by the manufacturers, I have corresponded with them fairly recently and they are supplying the wholesalers with them. To give you an idea of the cost, I asked my rheumy for a private prescription so that I would have an emergency supply. It cost me nearly £46 for 120 tablets!

[DorsetLady PMRGCAuk volunteer in reply to AshPen9]

Not sure 1mg GR are 'blacklisted 'as such [but they may be by individual GP surgeries] - they still appear on the BNF/NICE drug tariff list this month - but they certainly are more expensive - and only come in 100's whereas the 2.5mg & 5mg come in packets of 28.

Just for info - the 3 brands listed show NHS indicative prices varying between £23.38 to £49.76 whereas the Drug Tariff Price for all 3 is listed at £29.38...

Very expensive for you....do you really need to buy 1mgs?

[AshPen9 in reply to DorsetLady]

I do need them DL, but am hoping that the purchase of them will be a one off. It's for emergencies due to having problems getting them prescribed, and then if I do manage to get a prescription often the chemist can't get hold of any. So I asked for the private prescription 'just in case'. However the last price I had found for them was £30 per 100, so £46 for 120 was a bit of a surprise! I need the gastro resistant ones due to reflux, swallowing issues. I am tapering down to 4mg and rheumy thinks that may be as far as I get at the moment, so I will be using plenty of 1mg. Although from time to time I could do 2.5mg, 1mg, and a half of a non-coated one. Going to get some g/r empty capsules.

[PMRpro Ambassador in reply to AshPen9]

They are more expensive because the manufacturing run has to be set up for 1mg tablets exactly the same as for the others so that costs the same even though the pred is less and pred is cheap as chips anyway. The market for the 1mg is quite small - practically only for us I suspect, few people taper as slowly as we do - but they can't set up and make enough for 5 years, the shelflife is 2 years or so. So relatively high costs but small demand equals more expensive - market forces.

[AshPen9 in reply to PMRpro]

Thanks for explaining PMRpro.