Sudden PMR flare up - any advice please?

[Prof99]

I was doing really well in reducing my Pred, by .5mg every 3-5 weeks, depending on how I feel. Having slowly got down from 12.5mg - I have been on 3.5mg for 3 weeks (pus 10mg of Methotrexate) and suddenly, this week all my joints are really achy again, I am feeling really tired all the time and I feel that I have gone back in time. Other than increasing my exercise a bit (tennis and swimming) nothing else has changed, no extra stress or other ill health. I SO don't want to up my Pred again, but if anyone has any advice on a quick 'short, sharp, shock' increase - how long? what dose? - I would really love any advice anyone has to offer. Thank you.

[DorsetLady PMRGCAuk volunteer]

See this post which includes treating flares - healthunlocked.com/pmrgcauk...

But it could also be your adrenals stuttering into life....all that helps them is slow small tapers as you are doing...and patience!

[Prof99 in reply to DorsetLady]

Brilliant - thank you very much. I've just been reading another reply that you gave to someone saying you had managed to get off Pred? That is very inspirational. So, can I ask, in my position, would you up your Pred for a few days or just tough it out?

[DorsetLady PMRGCAuk volunteer in reply to Prof99]

Well that’s your call really...if it just adrenals you might find it settles, but if 3.5mg is just borderline for you might find a very small increase to 4mg is enough.

Personally I’d be inclined to try 5mg for 5 days, then back to 4mg.....

[Prof99 in reply to DorsetLady]

Thank you very much.

[Prof99 in reply to DorsetLady]

I have just read that article - thank you - it sounds like it could be my increase in physical activity has sparked this flare. I will take it easier for a few days in the hope that I can get back to comfortable. Thank you for taking the time to reply - this forum is SO much more help than my GP and my Rhuemy team!!

[DorsetLady PMRGCAuk volunteer in reply to Prof99]

Ok.

[PMRpro Ambassador]

You mightn't want to go up at all on the dose - but you need what you need and even 1/2mg too low a dose to deal with the new batch of inflammatory substances shed each morning will allow the inflammation to build up and get to the level where it causes symptoms again. You are not reducing relelntlessly to zero, the pred hasn't cured anything, you are looking for the lowest dose that gives the same result as the starting dose did. It sounds as if that could be between 4 and 3.5 for you - which is a really good, low level. But 3.5mg simply isn't quite enough and the drip of inflammation has build up over weeks. Even alternating 3.5 and 4 may be plenty - but it never works trying to tough it out if it is the PMR and if you have increased physical activity that can be enough to wake the gorilla. It doesn't mean you won't get lower - just not yet. Maybe a couple of months will be enough - and that will probably be long enough to let the adrenal glands wake up a bit too.

[misspops in reply to PMRpro]

I'm listening!

[Prof99 in reply to PMRpro]

Thank you - great advice, as always.

[piglette]

If it is your adrenal glands making you tired I have found you need to stay on your current dose and stick it out as otherwise if you increase you then go through the same problem again when you reduce. On the other hand it is not a good idea to decrease as it gets worse. Just stick it out until things improve. I had terrible fatigue caused by my adrenal glands getting back into action, even raising my hand to scratch my nose was an effort! If it is a flare you do need to knock the PMR on the head which can be done by increasing by 5mg for a week and then going back to your original dose or say 1mg above.

[Prof99 in reply to piglette]

Thank you for replying. That is, kind of, good news that my adrenals may be getting back into action. I think your advice not to increase is sound - thank you.

[piglette in reply to Prof99]

On the other hand if you have a lot of PMR pain you may need to. You don't need to put up with unnecessary pain.

[Stanca in reply to piglette]

And how do you know if it is a flare r if it’s your adrenal glands trying to work again? I am in the same situation as Prof 99. I have had PMR for a year and was doing well at 4mg a day. But now the fatigue is increasing and the pain is not excruciating but it’s certainly very debilitating . Wondering what to do . Don’t want to increase the steroids but struggling right now....

[PMRpro Ambassador in reply to Stanca]

Your adrenal glands trying to work again doesn't usually cause symptoms - it is more a LACK of symptoms and fatigue.If you have PMR-type pain and it is getting worse, it is a flare.

[Stanca in reply to PMRpro]

So I should go up to 5? Or six ? And for how long ? Thank you so much for replying so promptly!

[PMRpro Ambassador in reply to Stanca]

Whatever works - you have to try to find out. The higher you go, the less likely your adrenal glands will wake up. However, one very good PMR rheumy we know likes to keep patients at 5mg for up to 9 months - he finds that low enough to stimulate adrenal function - and then the rest of the journey is often much simpler.

[Stanca in reply to PMRpro]

Thank you so much!

[Prof99 in reply to Stanca]

Stanca - Sorry to hear you are suffering like me. I don't know if this may work for you but my GP gave me Co-codamol which doesn't take away the pain, but it does reduce it and I feel less fatigued too. I try not to take more than 2 a day though as it caused constipation.

[piglette in reply to Stanca]

PMRPro has put it very well. Adrenal glands problems don’t cause PMR pain they just make you feel like a zombie.

[Louisa1840]

Hi Prof99,I've just read on another post

"A flare happens when you've gone below the level of Pred your illness requires - either you have reduced too low or you are too active for your medication to control the illness.

Extra tennis and swimming?

[Prof99 in reply to Louisa1840]

Yes I feel the level of exercise could very well be the key. I had been playing fairly gentle tennis, twice a week, for 3-4 weeks and that had been ok, but I added in a swim this week, which wasn't comfortable (my arm joints!!) and I was very disappointed. I will now give both a rest for a couple of weeks and see if I can get back to where I was.

[PMRpro Ambassador in reply to Prof99]

I found swimming very difficult for shoulders and back - aquafit was great though.

[Prof99 in reply to PMRpro]

Frustrating, but I'll leave off swimming for a while then and try to get back to where I was.

[PMRpro Ambassador in reply to Prof99]

But SLOWLY!!! You will get there - but you have to start with just a few minutes and build up a few minutes extra each time. Rest days are important too. You can't fool PMR. And by the way - by FEW I mean between 2 and 5 mins!!

[Louisa1840]

Good Luck with it Prof - easy does it!

[agingfeminist]

What you are achieving is amazing. My PMR/GCA has been totally controlled by pred....now down to 5mg. Hurray! An attempt to reduce to 4.75mg allowed the PMR to breakthrough.

But my once very active life is reduced to a 15-minute spurt of physical energy (vacuum a floor, or sweep the garden) followed by a couple of hours of recovery. Sometimes two spurts of energy a day...every physical exertion feels like an achievement. Emptying my dishwasher or hanging up the washing uses a whole morning's energy. But fortunately can still work (all online) at least 4-6 hours a day. I congratulate myself on everything I get done.

Tennis! I can barely lift a racquet.

[Prof99 in reply to agingfeminist]

You're right, I'm probably trying to do too much, too soon. Like you, I used to do loads of different sports - so this new body is very foreign to me, not to mention the extra weight due to not burning off the calories. I already had a very good diet, so there isn't much to trim. It is hard to accept I am not the person I was 2 years ago. Well done you for staying so positive - that's what I need to work on.

[PMRpro Ambassador in reply to Prof99]

In the case of pred, it is the carbs you need to trim, irrespective of quality, it is quantity that is the crux. Some of us need to cut those carbs a lot further than others - and it surprises a lot of people just how many carbs they are eating, especially if they have a habit of snacking on fruit. Healthy, possibly, carby, definitely!

[Prof99 in reply to PMRpro]

Oh! That's interesting - I have been trying to cut carbs. Is there any particular 'diet' that they recommend following? Mediterranean? Food Dr? GI?

[PMRpro Ambassador in reply to Prof99]

Not really - eat how you like as long as you cut the carbs, especially processed foods and added sugar. Cutting processed foods also has the effect of cutting your salt intake - salt with pred can lead to fluid retention, also adding weight.

Learn what foods are what and go from that. This site is particularly helpful for learning the basics I think:

dietdoctor.com/low-carb/foods

No need to spend money on it if you can't/don't want to - use the money you save to buy better quality food.

There are people on the forum who have used Michael Mosely's Fast 800 diet - that is a low carb Mediterranean basis, others have used that with the 5:2 approach if every day 800 is too much for them. But the key is to find a way of eating that fits YOU that you can keep up long term. The Fast 800 is probably good if you want to lose some weight quickly but it doesn't have to be.

[ChinaWuntoo in reply to PMRpro]

diet doctor: Thank you PMRpro. At last something I can understand. My education did not include learning about carbs or calories - and I still have little idea what these words mean (and I'm not stupid, I think).

[PMRpro Ambassador in reply to ChinaWuntoo]

That's what I like about it - clear and simple. I have a brain filing cabinet about what's in what foods but I know very few people who do!

[Prof99 in reply to PMRpro]

aha, I purchased the Fast 800 Recipe book just last week - I thought you were saying that wasn't a good diet but I am pleased to see you think it is.

[PMRpro Ambassador in reply to Prof99]

It is - but it isn't something you could stick to every day for life - and it isn't intended to be. When you want to lose weight you have to make changes for life, not go hell for leather for a couple of months, lose a load of weight and then go back to how you ate before. All that happens is you gain the weight back straight away. But the cook book is good to teach you what you can have on intermittent fasting days. I did the original 5:2 for a while in the days when fasting days were only 500 calories - that needs VERY careful food choices - and found it was a great start to readjusting portion sizes. That is the main thing to aim for - everyone eats far too big portions nowadays. And we don't need that much!

[Swdai in reply to Prof99]

Having put on a stone and a half since diagnosed in Feb 2020 & having yet another flare up in March 2021 ( for third time ) I have been dabbling with Keto diet which cuts carbs/ sugars right down but allows proteins & fats such as cream in coffee . I have combination of bacon/ mushrooms / avocado /one boiled -or scrambled egg for breakfast but no bread / cereal. Lunch tends to be some home made soup from freezer - trying to use up courgette & runner bean soup from the glut last year . Evening meal is either chicken / steak or salmon with plate full of fresh veg / salad with dressing or a jacket potato - surprisingly don’t feel the need to snack .and not bored with it yet as the bonus is that have lost 10 pounds in five weeks and that is without exercising as I ended up in hospital for five days after severely tearing hamstrings and after five days in hospital have being stuck in a wheelchair for past ten days !!!! But getting better - started walking with zimmer yesterday !!!! .

Special treat on Keto is you are also allowed dark chocolate .

It is worth looking at from the cutting carbs angle & I do actually feel healthier : hair , skin and nails have improved also and feel like I have a little more energy - so there are quite a few positives . Wouldn’t go on strict Keto as I think it could cause some problems .

[Prof99 in reply to Swdai]

Thank you for that - I will look into Keto. I need to do something before the weight decides it's here to stay!!

[PMRpro Ambassador in reply to Prof99]

The only thing about keto is that it may be impossible to get into ketosis when you are on pred: pred triggers the release of random spikes of glucose by the liver from the body stores of glycogen in the muscles. Nothing you can do alters that and it has exactly the same effect of leading to insulin release that eating carbs does - but you can adjust the amount of glucose from your diet. Which is why I say some of us have to get to a much lower amount of carb in our food to lose weight. Just try - some people can eat 50g of carbs a day and lose weight - some of us need to be closer to keto levels. But keto is quite a commitment.

[Stanca in reply to agingfeminist]

How old are you aging feminist ? Sorry if I ask ....

[agingfeminist in reply to Stanca]

I don't mind you asking but what relevance does age have?

[Stanca in reply to agingfeminist]

You are right and I really apologise if you find that offensive. That was certainly not my intention. My reason for asking is that you mention that your once strong level of physical activity is reduced to 15 minutes of mild exertion like sweeping the garden. The other day I was sweeping my garden for a couple of hours and the following day I was utterly useless . I am 66 and that day I felt like 90. So my reason for asking was if age could possibly have an influence on all this or if it is entirely down to PMR. Again apologies if I have upset you!

[agingfeminist in reply to Stanca]

I am not offended. Just curious why you asked. It all began just before my 70th birthday...and yes I often feel likeI am at least 90 years old! My mother died a few years ago at 90 and I think she had more energy than I have most days! It is definitely PMR...I was renowned for my high level of activity before this hit me...now I am just grateful to be alive and functioning ...at some level...not affected cognitively...except when all the energy switches off.

[Stanca in reply to agingfeminist]

😀

[PMRpro Ambassador in reply to Stanca]

I was 51 when the PMR symptoms started, almost 20 years younger than agingfeminist, and at the gym/exercise classes almost every day. It crept up on me over a summer and I went from having loads of energy and physically able to do step classes and use the crosstrainer in the gym to feeling years older and having to change the gym I used to one with a pool and aquafit classes.

There is a research paper called "I suddenly felt I'd aged"

core.ac.uk/download/pdf/302...

[Stanca in reply to PMRpro]

Thank you so much ! PMR pro you are so kind. I am stuck at 4mg of prednisolone per day abd my husband and son in law ( who is a doctor) are urging me to slowly lower my dose ... at least try it they say. I am desperately keen to reduce the prednisolone but at the same time I am scared . I nearly always wake up with pain in my groin and a sense of enormous fatigue ... untilThe drugs kick in. Then during the day I am better . But I am worried about changing things and having to revert to higher doses .

This forum is superb by the way . I feel an enormous level of kindness and support here . I feel surrounded by kind friends here.

[PMRpro Ambassador in reply to Stanca]

Tell them they need to experience the pain themselves.

But I would also suggest a couple of things: try taking the pred much earlier - 2-3am is the ideal time but a lot of people take it before bed and don't have the morning symptoms, pr split it, 2mg before bed and 2mg in the morning. And use the one of the slowed tapers to reduce 1/2mg at a time and see how it goes. They may not work but if they don't you can go back quite easily. It will also shut the men up!

I also suggest you ask for advice about the groin pain. It could be bursitis - also part of PMR but can be made better by other more directed treatments and if you can improve it, you may get away with a lower dose of oral pred.

[Stanca in reply to PMRpro]

I just am so grateful for you! Honestly Iam ! You are a gem!

[Pollynolongerinagony]

hi there have you had the covid vaccination?

[Prof99 in reply to Pollynolongerinagony]

Yes Polly - I've had both. The last one was 27th April and although I was poorly for a day after the first one, I was fine after the second. (Astra-Xenica)