Just diagnosed and anxious

[Arflane97G]

After a very worrying couple of months have been diagnosed with pmr, am on 15mg of steroids for 2 weeks, 12.5 mg for 2 weeks, 10 mg for a month and then tapering down by 1 mg a month with hope of being off steroids within a year although this seems pretty quick compared to what I have read. Am hoping to cope with reductions ( have read can be quite difficult) by incorporating rest, green tea, aloe juice and meditation in my daily life. Any advice appreciated and best wishes to all pmr sufferers!

[Hidden]

Hi arflane97G, sorry to. Hear you have had to join us. It. Sounds like you have a realistic understanding of the potential ups and downs of pmr and pred. The main problem being the quick reductions don't allow time for the pmr to burn it self out. The main reason "getting iff', pred is so hard is that pmr is still active.

The only other thong I might add is adopting a low carb way of eating to control the random sugars spikes pred gives your body. Low carb mean. They are not so high or intense in my experience. So yes just rest and mollycoddle yourself! 🌻

[Arflane97G in reply to Hidden]

Thanks for all the lovely replies, i am making changes to my diet and fortunately took early retirement last year so have time to rest and heal. My inflammatory markers are at 35 but doctor says he has seen in the hundreds! Have telephone consultation with gp on Monday to discuss blood tests and monitoring, feeling huge improvement at the moment but long way to go I guess.

[Hidden in reply to Arflane97G]

Some people in the 100s for some things don't erealise they are and some peoe with pmr for years who are debilitated never get up aBove the "normal" range. I was 32 or 34 at first bloods. Didn't know you don't reduce if symptoms present. By 5th month reducing my markers went up to 54. Markers show inflammation but 34 shouldn't be treated differently from 100 in my view.

[Charlie1boy]

Hi, and I'm sorry to read you've been diagnosed with PMR.

To me, your tapering plan looks rather too fast, but people better qualified than me will be along shortly with all kinds of information and advice.

Meanwhile, its good you've found this forum; it has been invaluable to me during my 4.5 years with PMR. Get to know as much as you can about living with PMR, as this will undoubtedly help you to manage the condition .

Good luck

Paddy

[Mary63]

Your doctor’s suggested reduction is FAST. You might be ok but it is unlikely bearing in mind most people’s experience. Dorset Lady will be along later with her very helpful overview and advice.

2 weeks on 15mg is probably not enough. If it isn’t long enough to clear out all the inflammation when you go down to 12.5 the pain will return with a vengeance.

Some people can do 2.5mg reductions from 15mg to 10mg, but some can’t . And very few can manage 1mg reductions per month below 10mg.

The perceived wisdom is to only reduce by 10% at a time. And with each reduction you need to have the same result pain wise as you had at 15mg.

First few days of each reduction you may have some pain due to withdrawals. Dorset Lady will tell you about methods of tapering with which you do not get withdrawals. Good luck. This forum has been a lifeline to me. Diagnosed Jan 2016. Now on 6mg.

[Hidden in reply to Mary63]

Sadly they are almost following guideline to the tee. A bit longer on 15mg but 2.5mg drops to 10 for 4 to 6 weeks I think the last things I read said. . Thereafter 1mg month. We know its very ambitious but they keep doing it. They wouldn't need half as many rheumy appointments if they did 15mg for 4 to 6 weeks then 1m every 4 to 6 weeks to 10mg then dsns at 1m or 0.5mg but the Dr is following what they are told. My Dr reduced me at 1mg a month from 15mg and that didn't work so I did 0.5mg for 2 months. It just ought to be based on symptoms full stop.

[Hidden]

But I will flag up for Arflane97G, do not reduce if you still have symptoms. You should have at least 70% global improvement before you reduce so don't reduce if you have pain. You can train Dr's as you go😉

[Hidden]

Sorry you have had to join our family...but a warm welcome nonetheless. You have come to the right place for tried and tested advice and invaluable experience.

In an ideal world...we would all be off steroids in the quickest time possible. Unfortunately, the reality is that the pace to taper is dictated by our body....not by a doctors plan!

Like you, I was told to reduce after just three weeks...by a drop of 2.5mg. I experienced a flare with 4 days...and i recall the pain feeling worse than before I began the steroids.! Each individual is different. Some cope just fine. Most need a much slower approach

Regardless of which category you fall into; the key is to REST. The steroids are not a cure. They just control the inflammation to give our bodies a fighting chance.

It is very easy to over exert under the false sense of well being which is quite profound in the early days of treatment. So PLEASE PLEASE pace yourself. Dont be in a hurry to taper. Give yourself a chance to adjust.

The last thing you want is to yo yo on the steroids which will delay your overall recovery!

Make use of this forum. Ask questions whenever you need to. It is full of wonderful people with beautiful hearts.

Keep us posted!

[Arflane97G in reply to Hidden]

Thank you so much, was enjoying yoga, Pilates and swimming - now was pretty overjoyed to do a 15 min walk the other day! Doing some yoga stretches in the morning followed by warm bath - anything else seems just to daunting at the moment. Fortunately, have just heard that I have been granted an extension to submit my ma thesis so hope to get back to that soon - need a distraction from pmr.

[Hidden in reply to Arflane97G]

A distraction is good. As is the importance to stay mobile. I gave up even walking for a while! But certainly feel better with low impact exercise albeit no where near to what I had been accustomed to.

So whenever you are good and ready...ease gently back into the exercise saddle to keep your muscles in good shape.

Good luck with the thesis!

[Arflane97G in reply to Hidden]

Thanks, it is actually about how roman soldiers in the large republic fared in civilian life, some were ashamed of their wounds/ scars while others used them for political gain - attitude is all !

[Hidden in reply to Arflane97G]

I didnt want to ask in case I came across nosey!

Sounds like an incredibly intriguing piece of work! I'm assuming the choice of subject has something to do with your line of work pre retirement...or are you just an avid history fan?

Either way you should be proud of your accomplishment. Im sure you will sail through!

[Arflane97G in reply to Hidden]

Have just always been interested in roman and Greek history and mythology - plan to get back to it next week, even if just for an hour or so in the mornings

[Arflane97G in reply to Hidden]

How about osteopathy - could that help?

[Hidden in reply to Arflane97G]

There were three years between the onset of my symptoms...and the diagnosis of PMR. In between I tried physio...regular sessions with an osteopath...cupping...and accupuncture. The concoction was definitely not cheap...but kept me ticking. I did experience some relief...but was always swimming against the tide.

I would never suggest they are a cure...but some alternative therapies provide a welcome relief from symptoms...even if temporary.

We are all different. Experiment and find what suits you. I hear hydrotherapy is promising...but I cant speak for everyone who has tried it!

[Arflane97G in reply to Hidden]

Thanks for this, I tried acupuncture and osteopathy while I was waiting for diagnosis - did not like acupuncture at all - but maybe osteopathy worth another few sessions, my gp practice offers some subsided sessions!

[Hidden in reply to Arflane97G]

Avail any help on offer!!!!! Space out your sessions so you can asses if they are working or not.

[Hidden in reply to Arflane97G]

Not sure if you are aware, but adding a short summary regarding yourself and your journey to the PMR diagnosis in your bio aids others to respond to your questions more appropriately as it saves asking additional questions!

[Arflane97G in reply to Hidden]

Ok, many thanks - very new to all this !

[PMRpro Ambassador in reply to Arflane97G]

I found osteopathy worked to ameliorate the add-ons, as did Bowen therapy. Nothing touched the PMR itself except pred. But, to quote a supermarket group, every little helps!

[Arflane97G in reply to PMRpro]

Bit apprehensive this week as plan is to reduce steroids to 12.5 mg but I guess I just have to see how I get on but have booked first session of Bowen therapy on Thursday, it seems to have mixed reviews but can’t hurt to try 🙂

[PMRpro Ambassador in reply to Arflane97G]

I find the sessions really relaxing overall but I have had superb practitioners, Tell us about it and we'll give our opinions whether they sound good or not!! At least it isn;t an open-ended commitment because if there isn't a difference in 3 sessions it probably isn't the right thing for this particular problem.

If you have enough pred you could reduce using this approach starting at 1 day new, 4 days old:

healthunlocked.com/pmrgcauk...

You will reduce the same amount in a month but it is less likely to go wrong or make you feel bad.

[Arflane97G in reply to PMRpro]

Will let you know how it goes - also booked a cupping session so will be interesting to compare

[PMRpro Ambassador in reply to Arflane97G]

Just corrected language on a physiology paper about that and its effects on oxygen levels in muscle. I'm looking forward to seeing the scientific referees' opinions - it is a bit outside our usual area ...

[Arflane97G in reply to PMRpro]

I am going to little escapes in Crystal Palace, any one on here from south London who have been there?

[HeronNS]

It is best practice to be at your starting dose for at least four and preferably up to six weeks before starting any taper. From reading the forum I would also suggest that the taper my doctor told me to do of 1 mg per week rather than 2.5 mg for two weeks was easier on the system and brings you to the same level in the same amount of time. At 10 mg it is essential that the taper slow down considerably, so advice to stay there for a month is good, but you need to make sure your symptoms are still controlled at every level before proceeding further.

[DorsetLady PMRGCAuk volunteer]

Hi,

And welcome,

Here’s a bit of reading for you to do at leisure - but agree with others your tapering plan may be a tad optimistic -

first is general intro to PMR/GCA and living with it,

second is various slow tapers, which you may or may not need - but worth considering if you are struggling at any time -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[scats]

Don't be anxious, we are all pretty ordinary on here and we're coping! Try to relax if you can and be accepting as that will make your journey easier, and feel free to ask about your worries, we're all here to support eachother.

[piglette]

At least you have found this forum early and can see how people who have PMR feel. The doctors who suggest these reductions have never had PMR! The important thing is to recognise you have an illness as PMR is life changing, so rest, rest, rest and pamper yourself.

[Arflane97G in reply to piglette]

Yup to rest, am on day 10 of steroids and feeling so much better temptation is to over do things, so am having afternoon nap / rest every day. Am finding I am waking up in the early hours in some discomfort - assume steroids have worn off by then and inflammation is at its height - but try to keep calm, pain will decrease and I can catch up on sleep in the afternoon.

[piglette in reply to Arflane97G]

I take my steroids at 2am! A lot of people like to sleep then of course. I still think back to that awful pain though, and how miraculous the pred was in less than 24 hours.

[PMRpro Ambassador]

I had PMR for 5 years before I got a diagnosis - because although I had symptoms, my blood levels were "within normal range". Level of markers does not equate with severity or duration of PMR I'm afraid. Nor does speed of response to pred - I was 80% better in under 6 hours. After 15 years in total I still have PMR! Like being off pred in 1 year - an extreme outlier. Barely 1 in 5 patients get off pred in a year.

Through all that time the only thing that kept me upright and mobile was aquafit every day (I was freelance so chose my working hours and had a superb local gym where they offered an amazing off-peak membership) and Pilates and Iyengha yoga after the aqua class. Didn't make a lot of difference to the pain but I could move at least.

And THIS is a far more reasonable approach to tapering - takes 2 years, by which time about 1 in 3 patients manage to be off pred:

rcpe.ac.uk/sites/default/fi...

It is written by expert rheumies to help GPs - so no-one should get their nose out of joint.

[Ebn49]

Hi Arflane, I'm at a similar stage to you - was diagnosed with PMR on 3rd July after a 5-day 'trial' of Pred 30mg. The GP put me straight onto 15mg, with instructions to reduce by 1mg 'every 2 or 3 weeks'. The first reduction from 30 to 15 was a bit of a shock, as I'd felt so good on 30. This seems to be quite common. For a few weeks on 15mg I was getting the odd bit of neck and hip soreness, although none of the stiffness or real pain I had before starting the Pred. There's so much good advice on this Forum and I read just about everything I could about tapering, as a result I've gone quite slowly so far. The GP was going to give me the same taper pattern as you were given - reduce from 15 to 12.5 then from 12.5 to 10 etc. But she agreed it was better to go more slowly if I still had symptoms. So I've done 15mg - 20 days, 14mg for 21 days, 13mg for 28 days, 12mg for 22 days, and am currently on 11mg. Very fortunately I haven't yet had a flare. I do get some twinges and tiredness but then again I would say my activity levels are probably back to 80% of what they were before the PMR really took hold. So sometimes after (gentle) yoga or swimming I may be a bit tired.

If I get to 10mg comfortably then I'm planning to follow the 'Dead Slow Nearly Stop' taper from there, depending how I feel. See: healthunlocked.com/pmrgcauk...

It's already been mentioned by others but something I've found very helpful for me is to reduce my carb intake (and increase - a little - fats). Plus the vitamin supplements - lots about that on this forum. In the 3 months since starting on the Pred I've dropped some of my waist & back fat and that in itself gives me more energy as I am lighter than I was. (Although losing weight isn't the aim.)

All the best with your PMR journey