Help needed with Flare Up when tapering

[Theziggy]

Brief history, was diagnosed with PMR in June and was following my Rheumatolgist’s tapering plan – 15 mg for 2 weeks then 12.5 for 4 weeks then 10 mg for 4 weeks and then drop by 1 mg every 4 weeks.

This worked well until I got to 9 mg and was on the 3rd week when I had two big flare-ups which prevented me walking or driving – one in the knee, followed by one in the shoulder and arm. My PMR starts very gently in the morning with a localised sharp point of pain in either the shoulder or the groin and then develops through the day into a full blown flare-up, which stays full blown for at least 2 days.

So I went back up to 15 mg for a week and dropped to 25 mg for a fortnight, before dropping to 10, thinking that this time I would do the DSNS 26 day program when I got to taper to 9 mg. However, on Wednesday had the localised sharp point of pain in my right groin and on Thursday two of my fingers on my right hand were getting very stiff, and by evening I couldn’t close my fist and any movement of the fingers was extremely sore. Sleeping was impossible and when I got up today the back of my hand was swollen and red and very sore. So I took 15 mg this morning. I can just about drive and was glad it wasn’t my left hand as changing gears would be impossible

So, my question is when and what tapering program I should start again? I was thinking 15 for a week or until the flare-up had subsided, then 12.5 for 4 weeks followed by tapering off to 10 using the DSNS 26 day plan

Thanks in advance

[DorsetLady PMRGCAuk volunteer]

Hi

The trouble is once you’ve had a flare or two it seems to make tapering even more difficult.

I would suggest stay at 15mg until you think things are back under control before you consider tapering again. Plus get 1mg tablets and reduce by only 1mg a time. Although it’s a recognised taper many find 15-12.5-10mg too much. 1mg is nearer the recommendation of not dropping more than 10% of current dose.

By all means use a slower programme as well - you need all the help you can get.

Good luck.

[Marijo1951 in reply to DorsetLady]

Interesting. I saw my rheumy on Wednesday and she told me to reduce from 15 to 12.5 mg for a month and then reduce to 10 mg. I wasn't sure about this and asked if she could prescribe some 1 mg tablets as I only have 5 mg. She said no need as she could prescribe 2.5 mg tablets. I should add that I was given gastro-resistant tablets which I've never had before. I don't know whether she deliberately prescribed them as she suspected I might try chopping up the tablets, or if it was just that the pharmacy only had those.

[DorsetLady PMRGCAuk volunteer in reply to Marijo1951]

Couldn’t possibly comment! Hope your taper goes well, but if you struggle you may have to go back for 1mg tablets.

[Marijo1951 in reply to DorsetLady]

Today was my first day at 12.5. So far I'm okay, but we'll see over the next 4 weeks...

[Theziggy in reply to Marijo1951]

Sounds like the plan my rheumatologist gave me see here - first plan - steroidtaper.azurewebsites....

[Marijo1951 in reply to Theziggy]

One difference between us is that my rheumy told me to do a month on 12.5 mg and then to go to 10 and stay there. My next appointment is 27th February and presumably we'll discuss further reduction then. I'm a bit happier about staying at 10 mg for a while, assuming of course that I don't flare at that level...

[PMRpro Ambassador in reply to Marijo1951]

Why do they insist on mixing enteric coated and plain pred? The plain are absorbed quickly within at most a couple of hours and the enteric coated take anything upwards of 4 hours to reach their peak in the blood. There are swings and roundabouts with that and it isn't always bad - but you are getting a lower peak dose. So it is slightly less inflammatory...

[Marijo1951 in reply to PMRpro]

I only got 28 days's supply of the enteric-coated tablets which I am going through now. Once they're finished I shall be back on my reserves of uncoated ones. I'm not sure if I actually feel any difference at present.

[piglette in reply to Marijo1951]

There is no reason you should feel any different. It is just that those taking PPIs can stop doing so if they have the enteric coated ones. I suppose that may make people feel better without the PPI of course.

[SheffieldJane]

You do seem to be rushing your taper before your PMR symptoms have properly settled. You have only been diagnosed for 4 months. I am afraid that PMR lasts more like 4 years. The aim of tapering in the early days is to steadily and slowly aim for the lowest possible dose you are comfortable at.

I would return to the last inflammation controlling dose you were on and stay there until you feel that the pain is under control. I would then try dsns and stop at the first sign of trouble. This has worked so, for me with no flares. I started on 20 mgs over 2 and a half years ago and am resting at 6 mgs now. Disheartening I know but this is a pretty significant disease. Good Luck!

[Theziggy in reply to SheffieldJane]

I didn't know I was rushing anything , I was just following my rhuematologist's tapering off plan (having never heard of PMR I accepted his plan as though carved in stone). My rheumatologist's plan is one of the plans in the online tapering plans site steroidtaper.azurewebsites....

BTW my PMR started in mid March but I wasn't diagnosed until June.

Just got appointment for rheumatologist today for the 19th November so may stay on 15 mg or 12.5 mg until then and see what he says.

Thanks for your answer

[SheffieldJane in reply to Theziggy]

Well at least he has a taper plan which puts him above many others. I made assumptions because you reached 9 mgs in a relatively short period of time and would have been heading for a possible bumpy patch at 7 mgs when your Adrenal glands have to join in.

Not many of us knew a thing about PMR and GCA until it arrived in our lives. I learn something new every day. DorsetLady ‘s plan sounds workable. Good luck.

[Theziggy in reply to SheffieldJane]

It is a plan that a lot of rheumatologists seem to use - which I assume means it works for a lot of people - so it would be natural he suggest this way first - takes about 11 months if it works, then if there are hiccoughs he can try a longer slower plan.

On a slightly off topic note - are sore throats and blurred vision anything to do with PMR?

[DorsetLady PMRGCAuk volunteer in reply to Theziggy]

Hi

Yes it is a plan that many Rheumy’s use - and it may well serve some patients okay.

But I have to say that after 6 years on this forum I have discovered there are a lot of patients who have the same problem as you!

It’s a plan - but only a plan! It’s not set in stone, or it shouldn’t be - and a good Rheumy will appreciate that. Life has a nasty habit of sticking it’s five eggs in and throwing “the plan” out of the window.

Plus too many Rheumy’s still believe 2 years max for illness- and that’s not written in stone either!

Pred can cause blurred vision and as your immune system is crook you are likely to get minor illnesses like sore throats etc more readily.

Usually both recede in time!

[Theziggy in reply to DorsetLady]

Thank you DorsetLady

Just that I read that both sore throat and blurry vision were symptoms in GCA, plus 3 years ago I had a very sore scalp (before PMR I know but it perplexed me.

The site I mentioned in a previous post shows around 20 tapering plans - 3 submitted from forum members here - the DSNS plans. But some of the other plans are pretty slow.

Thanks again.

[DorsetLady PMRGCAuk volunteer in reply to Theziggy]

The plans may be slow, but if your illness is going to last anything up to 5 years (which for some it does), then there really is no rush.

You have to do what’s best for you - if you have a Rheumy that is sympathetic and knowledgeable about PMR (some are more than others)!

You are correct in that sore throats and blurry vision can be a pre-cursor to GCA - but it’s usualy pre diagnosis and pre treatment - although not always.

The sore throat is different though, it more connected with eating and usually stops when you stop eating! Not there all the time. Been there! And with the blurriness!

[SheffieldJane in reply to Theziggy]

I have certainly woken up with a scratchy throat and blurred vision is a listed Pred side effect. I am glad you have faith in your doctor, it helps.

[Theziggy in reply to SheffieldJane]

Well, I had faith in my rheumatologist until finding this forum. I was diagnosed with type 2 diabetes 10+ years ago and had faith in my doctor until I found a very helpful forum and with their help have had normal blood sugars test every 6 month diabetes MOT - going against the GPs advice! Sadly the pred is not helping my diabetes at all

[HeronNS in reply to Theziggy]

Yes, the blood sugar is an issue even for those without pre-existing diabetes. Only control seems to be eliminating as many carbs as possible, especially the low-nutrition "white" carbs, if you want to avoid having to take more diabetes meds. Good luck! (And, yes, it does get better).

Also wanted to say, if you "flare" only go back to the last dose which controlled your symptoms, not all the way back to the beginning (unless that was the only level where you felt at your best).

[Theziggy in reply to HeronNS]

How do you think I have controlled my diabetes up to this? One day - after PMR onset - I had eaten maybe 10 carbs all day and got blood sugar readings I had never seen as high in all my time with diabetes.

Regarding flare - I flared on 10 mg this time so I only had a choice or 15 or 12.5 to choose from and chose 15 mg as this flare was worse than the original PMR symptoms - my hand swelled up to twice its usual size - all my original PMR symptoms had a lot of pain and stiffness but no swelling

[HeronNS in reply to Theziggy]

Good! I know some doctors are still telling their diabetes patients carbs are okay so it seemed worth mentioning. My blood sugar went really high when I started pred and when I complained to my doctor I didn't seem able to put on weight (I'd lost a lot with undiagnosed PMR) she told me to eat more carbs! 🙄

[piglette in reply to HeronNS]

It goes to show when they last read up on carbs and diabetes. My theory they can’t read.

[PMRpro Ambassador in reply to Theziggy]

"which I assume means it works for a lot of people"

Not necessarily at all...

[patriciawhite]

I went to my doctor with a swollen stiff hand ,It looked like I had punched a brick wall .He just said it will go down and that was that . My point is when I told the Rheumatologist about it after the event ,she said I wish I had seen it and organised a scan .It then was diagnosed as Rheumatiod atheritis The steroids aparrantly mask some things . The main thing I want to say is she told me if I have anything visible again photograph it and at least she can see what I am talking about . I would never have done that I am far too frightened of seeming like a drama queen .Bear it in mind .A photograph will help them see what may just have subsided by the time you get to see them next .Its not necessarily your diagnosis ,just a mention for you for future advice .

[Theziggy in reply to patriciawhite]

I did take a photo of mine - using the hand that wasn't affected. Though when I got out of bed I was shaking and close to fainting and couldn't hold the phone camera steady enough for a few hours

[Rover25]

theziggySorry to hear about your flare up.

This condition is different for us all, what appears to work for one does not work for another. I concur with Dorset lady - following a flare the best thing to do is establish the minimum dose that leaves you pain free and stay on that dose for a while before taking a free look at a more gentle tapering process.

I was diagnosed in Oct 15 and I am currently having to go through this process having been completely off pred for three months and then getting a nasty flare up!!

Frustrating does begin to describe how I feel, however I take consolation from two things.

1. A low dose consistent dose of pred has minimal side effects and gives you freedom from pain.

2. For most of us PMR is not for life, you just don’t know the time it will affect you so you keep going with a positive mindset.

3. PMR is not life length limiting, so many others are dealing with more serious stuff.

Keep positive and focussed

[Theziggy in reply to Rover25]

Thank you

[PMRCanada]

Hi Theziggy.

Yes the tapering plan provided to you must be “standard protocol” as my (former) Rheumy put me on the same path. The result was that I flared going down from 15 to 12.5. I had to go back up to 15 for 5 weeks. Rheumy wouldn’t give me 1mg tablets so my GP eventually did. I cut non-coated 5mg tablets into four pieces allowing me to taper down from 15 to 13.75, then 12.5 and 10 (where I am at currently). I stayed at each level for 2 weeks with a transition week in between each drop (alternate old and new dose daily for a week) and experienced no flares. I plan to continue tapering in this fashion but only dropping .5 each time as I go below 10mg.

Try tapering slower this time around, listen to your body/symptoms along the way. 1mg tablets make it easier to drop at a slower rate, just make sure if you do cut pred pills that they aren’t the coated variety.

Wishing you all the best with your pains and swelling, and hope you get things stabilized before embarking on another reduction. Keep us in the loop with your progress.

[Theziggy in reply to PMRCanada]

I can get 1 mg tabs. I also think that I was well controlled when on 12.5 mg, so will do a taper plan when changing from 12.5 to 10 as it now seems quite a big jump. I also think that I was using my right hand to use secateurs on quite difficult to cut branches on the previous day - that it may have contributed to the flare up