Advice

[joat]

Second day of reducing from 10mg to 9. Feel slightly more strange than usual but pain not any worse. How long (if at all) will I get a reaction?

Would welcome any comments from you helpful people.

[Celtic PMRGCAuk volunteer]

joat, unfortunately, it isn't possible to say whether or not you will experience a reaction from your latest reduction as we can all respond quite differently as we reduce from any given dose. I do hope you won't experience any problem at all. However, you may find reducing in half mg decrements more reliable in the future.

[1Purplecrow]

Hi Joat,

i usually feel withdrawal niggles pretty quickly. Most are just pred withdrawal, and I take it easy for a day or so...if pains do not ease up, and go away after the first week, then I begin paying closer attention. I have ignored the growing pains until I was really hurting...which does no good. The pred is to control inflammation, and pain is the obvious signal that inflammation is still alive and chugging away in the background.

I have been on this train for 4 years, and its fairly easy to sort out pred withdrawal from PMR inflammation, mostly......maybe...😜...or not🤣

The wise ones will be here soon, hang on.....

Kind regards, J

[ali5son in reply to 1Purplecrow]

Hi new to all this what are symptoms of pred withdrawal

[PMRpro Ambassador in reply to ali5son]

Difficult to say - everyone is different. But usually it is a return of the symptoms you are taking the pred for - immediately you reduce the dose. A flare tends to take a few days for similar symptoms to appear. But that is just a very rough guide.

[Hindags]

I wish I knew the answer. My experience has been that the first few days after a taper, I do feel strange, then things begin to settle in. I've read hear that that is usually Pred withdrawal.

I've alswo read here that increased pain or stiffness, indications of a too rapid taper or a flair, are more likely to occur after a week or two.

I've just been through a difficult differential self diagnosis relative to this issue. When I tapered from 10.5 to 10, I was fine for two+ weeks than I started feeling a bit fluish and the usual PMR locations a bit more painful and a bit fatigued in a way I haven't felt. I just took myself back to 11 for two days to see how things would go. Not sure my rheumy would have approved, but it was the weekend.

I self diagnosed with some kind of allergy/sinus thing. Most left nostril and left temple pain, stuffed nose, raspy throat and a bit hoarse from mucus. Went back down to 10 on pred the last three days and up on allergy meds, old fashioned sudafed, and guaifenesin. Of course the left temple pain scares me and has me on alert, but it is not painful to touch and seems closer to the eyebrow/sinus area: watchful waiting. Other PMR type pains have not recurred.

I am supposed to be starting towards an alternating pattern of 10 and 9.5 starting tomorrow, but I'll hold off since something is going on. I will tell my Rheumy about my change of treatment plan.

Saw this article that I found interesting. It is written by someone with the Chrug-Strauss Syndrome Association. CSS ia a vasculitis of small to medium sized blood vessels as opposed to PMR which grenerally involves larger vesself iirc.

cssassociation.org/patient-...

[SheffieldJane in reply to Hindags]

Good link Hindhags. Underlines what we see in practice.

[Jackoh in reply to Hindags]

Thank you for the link Hindags. Good to have this info re emphasised.

[Hindags in reply to Jackoh]

Now new stuff to those of us who frequent these forums, but I thought it easy good to have in one place. I was particularly interested in the adrenal info.

[PMRpro Ambassador]

How long is a piece of string?

Have you gone from every day 10 to every day 9 overnight so to speak? That is a bit precipitate - if it works fine but 1/2mg drops may be less of a strain on your body.

[Sandy1947 in reply to PMRpro]

When going from 10 to 9 and reducing by 1/2 is it a good idea to stay on that dose for 2 weeks, a month? Is it just best to use DSNS method at the onset? I'm asking in anticipation.

I have gone from 25mg to 21mg by decreasing 1mg every week. I have a bit of Pred withdrawal symptoms 2nd day after reduction but then I feel OK. Still have slight shoulder discomfort upon waking and fatigue that hits at various time since I probably overdue activity. Still in adjustment mode 3 months in.

Thanks for your expertise and helpful advice. Couldn't do it without you and the others.

[PMRpro Ambassador in reply to Sandy1947]

Everyone is different - and probably a good way to go about it is to try it all ways. Start with a 1mg drop - if it works then good. If it doesn't work without problems, try a 1/2mg reduction. If that works - again, good. The next step would be to use the DSNS approach with a 1mg drop - if that works you have managed a whole mg reduction. If it causes problems you can go back to the old dose and try it again with 1/2mg.

Some people will manage it OK with the first approach - others will need DSNS with only 1/2mg. It is relatively easy with the higher doses, the lower you get the harder it will become. For some people there will be no discomfort, others will react badly - and that is why the DSNS approach was worked out: you let your body get used to the new lower dose just one day at a time, the next day you give it a comfort blanket of the dose it was used to and so you don't have more than 1 day at a time feeling rubbish!

[Sandy1947 in reply to PMRpro]

Thanks so much.

[Sandy1947 in reply to PMRpro]

Thanks

[JulieR2]

Hi there I reduced from 7 to 6 and felt a lot worse! But I stuck it out and it took around a week to settle! So I think that getting use to the impact of reduction is something that takes its toll at different times for different people up until this point things had been okay ish

[SheffieldJane]

I did 10 for 6 days and 9 for 1 day, then 10 for 5 days and 9 for 2 days then 10 for 4 days and 9 for 3 days and so on until it was 9 mgs for the whole week. My body didn't notice. Sometimes there is a bit of withdrawal pain for a few days - if this persists and starts to get worse it's time to pause for a bit especially during times of physical and emotional stress. A flare is when the symptoms really are burning out of control, then you have to return to the dose you were last comfortable at. I am struggling at 7mgs but have stress, so I am not reducing while I go to a Greek island to do very little.

[lyndamcw]

I reduced by one per month and am now on 7mg .I found no difference and I would say a week on New dose and you will know if there are going to be any effects if not ....great.I am having problems reducing 7 to 6 so maybe now I have to do .5mg reduction.the lower you go the slower the reduction