Reduced to 1mg Know joint pains are unbearable

[Brears]

Ive been on 1 mg steroid tablets for at least 3 months and seemed to be coping with my joint pains.Ive today increased to 2 mg because of increased pain and difficulty walking. I can’t get in touch to speak to anyone at the surgery.Still waiting for Bone Scan results from last September.Anyone else had to increase there dosage? I am so grateful for any support you have all helped and advised me before.

[PMRpro Ambassador]

You are never heading relentlessly to zero - you are looking for the lowest effective dose, the lowest dose that manages the inflammation and symptoms it causes as well as the starting dose did. Over time the activity of the underlying autoimmune part of PMR seems to fade away - and you can get to the lower doses. Some even get off pred altogether, only to find the symptoms reappear a few weeks or months later as the inflammation builds up again from the very low activity. You probably need about 1 1/2mg - still a really low dose/

You are not alone - it happens to a lot at some point and Prof Dasgupta, formerly from Southend, told us he often keeps patients on 2-3mg long term because it reduces the risk of relapses. Good doctors know this and don't try to force patients to too low a dose on the grounds that such a low dose can't be doing anything!

[Suet3942 in reply to PMRpro]

if I’m lucky enough to get to 2mg pred I’m staying there for the foreseeable.

[PMRpro Ambassador in reply to Suet3942]

Luckily my rheumy will be happy with 5mg - and doesn't expect me to get any lower!

[Suet3942 in reply to PMRpro]

That’s encouraging x

[Lanakay in reply to PMRpro]

I was diagnosed in September of 2017. I am currently taking 2mg of prednisone and have been for quite awhile. I started out at 20mg. I’ve tried a couple of times to get to 1 1/2mg but always end up back at 2. My rheumatologist does not seem concerned about this low dose.

[Bcol]

Morning Brears, nothing to add to PMRpro and HeronNS thoughts about Pred but a five month wait for your bone results is not acceptable. Normally I'd say "no news is good news", but not sure how much we can rely on that now. If you can't get through on the phone to chase them do you have an e- consult (or similar) system you can use to chase them up. Ideally to get the actual figures rather than the worry or no worry comment.

[HalleysComet in reply to Bcol]

Write to the practice manager at the surgery. Explain that you are unable to speak to the GP because you cannot get through. Say you need the results of your Dexascan explained to you and you have been waiting for months. That should make some waves.

Good luck.

[Jackoh]

Agree with all the advice given but why are you having to wait since September for your dexa scan results? Something not quite right there. 💐

[Pixix]

How about driving/bus whatever you usually do…to your surgery! Arrive there in person. I see so many posts here where people say they can’t get in touch with their surgery, can’t get through on the phone…I don’t have that problem, I’m lucky, but I did think what would I do? I’d get in the car & drive the 4 miles there. If you cannot do that, I sympathise & apologise, I see you are having difficulty walking. But it’s hard for them not to deal with somebody who just arrives with a query…I believe they are all open & staffed now, just understaffed due to people off with Covid (ours, had two postponed blood tests)…just a thought!! I see it repeated many times on this forum lately, & it’s wrong, & sad, but a sign of current problems. Just a thought…S x PS have you been phoning the hospital dept where you had the scan? May be easier than local surgery?

[Omanain in reply to Pixix]

My son did this recently and was told It was not a drop in centre!

[Pixix in reply to Omanain]

but if he’d then given them a list of the times he’d tried to get through, or the length of time he’d been holding, it would have showed them he’d tried…& also that their system wasn’t working well! Perhaps!

[HeronNS]

I thought this appeared in reply to a different post so deleted. But here is is again, below next paragraph. Answer to your question about anyone having to increase pred dose from a very low dose.

As for getting results of DXA scan, that should be available within days not months. I wasn't able to get complete info although my doctor received a rather vague recommendation that I be prescribed AA (which I refused) and even she hadn't been sent the t-score. After some time I was able to get that info from the relevant person at the hospital; it it took some doing and asking around my circle to get a lead! Even then they were reluctant, citing "privacy" which was absurd as I was the patient making an enquiry about her own results. I hope your system works better than ours does, or did back in 2015. I had been told that I'd get the complete results at an osteoporosis workshop I signed up for - but that wasn't until June and the scan was done the previous fall. Persistence got me the t-score in November.

Yes, she says, waving her hand. Over the nearly 8 years I've been on pred I've actually been taking around 2 mg most of that time, after the inital taper which took a couple of years. In those subsequent years there have been at least two occasions when I've had to go higher, and my one attempt to try zero after taking a year to taper from two to zero, ended in failure. I'm fairly resigned to being on or about 2 indefinitely but that doesn't mean I don't try, albeit now very cautiously and slowly, to try to get lower. After all there have been intervals when 1 or 1.5 seemed adequate. I think it's important to find the lowest dose which works, but also be aware that can change as one's circumstances change. PMR can decide to flare up. Or maybe the dose you thought was good enough is just barely too little and after time the pain begins to return.

Good luck. Keep us posted how you are doing. (Me - latest bad flare - increased disease activity - early 2021. Currently at 2 mg and tapering to 1.5.)

[Carrollee]

🤔 I got my scan results from GP a couple of weeks after scan. Have had 3 and never a problem

[Lafontainepam1]

I was trying to go from 5 to 4 1/2 noticed joints hurting more, and heavy legs, I’m 73 and 11 years with PMR, not worth it since after back surgery and left with numbness in my right foot, I have enough trouble trying to walk!

[Nagswoman]

I got my bone scan results by asking the radiology department for a dvd. You can get copies of all or any of your scans and xrays. Freedom of Information Act if they quibble. Some charge a small amount. Some are free.