New PMR Sufferer

[LTDWJ]

Hi, as a new PMR sufferer, I am keen to hear from similar sufferers of the condition! I consider my symptoms as moderate and I appear to be managing my condition reasonably well with 15mg of Prednisolone. I also supplement my diet with Magnesium and Vitamin D, a daily dose of Cod Liver oil. I actively cycle, having taken up eBiking (if that's a word) and I am now cycling to work and back, a distance of 32 miles each day! My diet is called a 'Mediterranean Diet', which my wife prepares each day. Since starting this diet this year, with the aim, initially of losing a couple of stone (28lbs) in weight, I have felt more energised and mentally alert!

I am close to half way through my weight loss journey, albeit as I write I am on holiday with the indulgence no doubt affecting my weight loss temporarily. This said, and with my condition mostly under control life is good, but I strive for better and so I have joined this forum to gain knowledge and understanding of good health tips and advice for the future.

However, please don't bombard me with loads of health tips! I am more interested in understanding other peoples health journeys, especially people with a similar profile as me, stroke sufferer now PMR sufferer!

S troek

[SheffieldJane]

Hello and welcome! You seem to be doing well. For a recent sufferer, the exercise you are able to accomplish without adverse effects is remarkable. You are in the right place for shared experiences and advice from people who have done their research and keep doing so. You tend to get good responses to specific questions. Have a look at FAQs for a range of advice on managing all aspects PMR and GCA.

[Kendrew]

Hi LTDWJ,

Welcome to the forum, where like myself you'll find reliable and trustworthy advice, support and help from many knowledgeable, experienced and informed people.

As SheffieldJane suggested, browsing through the FAQ's section will lead you to a host of information relating to most of the common issues that can usually be encountered. Staying as healthy as possible, obviously being one of them.

This will mean different things to different people though, as no two people will experience PMR in exactly the same way and everyone's journey will be different.

Issues and complications from the condition will regularly cross over with other people's experiences, but how we deal with them as individuals may be quite different. The way we choose to remediate a problem will be dependant on the the combination of other health factors we're having to take into consideration at the same time and this in turn will affect how we factor in 'solutions' that others have found helpful.

You can read many people's health journeys by clicking on their profile picture next to their 'posts'.

I, like some others, have documented mine quite comprehensively but it's up to individuals to decide how much they wish to share.

Your physical ability is quite remarkable.... you're very fortunate to still be able to be so active. Long may it continue for you.

PMR can be very unpredictable and throw you some 'curved balls' at times. This is when our forum comes into it's own and provides the guidance, support....and often reassurance... we're looking for.

You seem to have found a regime that currently works for you so I'd continue to embrace it until such a time comes when it may require a 'tweak'.

Onwards and upwards!👍

[SnazzyD]

Hi, one question, what in your opinion needs to improved?

[LTDWJ in reply to SnazzyD]

In simple terms I don't want to remain on steroids any longer than necessary and therefore I wish to step down my dosage. This was attempted until guidance by my GP from 15mg to 12.5 mg and the symptoms returned so at present I appear to be just ablout on the correct dosage, but under constant review.

[PMRpro Ambassador in reply to LTDWJ]

No-one want to remain on steroids longer than necessary - though to listen to some doctors they obviously think we LIKE taking them.

Stepping down from 15 to 12.5 in a single step may have been the problem - or you simly hadn't been on pred long enough to clear out the existing inflammation. It could have been the step down meaning your body protested at the change in dose not that the dose was too low but we would need to know more. Reductions of not more than 10% of the current dose work better than predetermined larger steps even if that is how to reduce the dose in other uses - PMR works to its own rules and trying to fight them

But at a guess - you are trying to do too much too soon and without "training". You can't just dive in to what you did before, there is a new normal and the ongoing autoimmune disease underlying the symptoms is still active, attacking your body and having a similar effect to having a viral infection. Your muscles are less tolerant of exercise and take longer to recover - and you can't fight PMR. It will always bite back and win in the end.

[diana1998 in reply to LTDWJ]

I could never have dropped from 15mg to 12.5 in one hit. I reduced by 1mg every 4 weeks and at 7 reduced by 0.5mg. Better to be slow and successful than yo yo.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Maybe have a read though this for general info about your illness -and also FAQs on specific issues -exercise and tapering being just a couple -

healthunlocked.com/pmrgcauk...

[LTDWJ in reply to DorsetLady]

Hi, thank you for the article. I will have a good read

[Eily459]

It is the effects of being in Prednisolone that is my main concern Initially I was started on 15 mg and have weaned down to 6 and finding it so hard to get below

Being on steroids have hugely impacted all aspects of my being in a negative way

[LTDWJ in reply to Eily459]

Hi, may I enquire in what negative way the taking of steroids has affected you?

[Eily459 in reply to LTDWJ]

In many ways weight gain skin tone mood lowering plus I now feel I have palpitations I’ve been taking steroids 12 months now

[LTDWJ in reply to Eily459]

Hi, I was conscious of the possibility of weight gain issue and my new diet plus exercise SEM to combat this. As for low mood I seem to have seen the opposite effect. I'm buzzing most of the time. You have my sympathy!

[PMRpro Ambassador in reply to Eily459]

Believe me - all those can be adverse effects of PMR itself. I suffered them all in the 5 years I had PMR without pred (not diagnosed). The palpitations I have (atrial fibrillation) is almost certainly due to the autoimmune disorder having damaged the electrical cells in the sinus node that govern heart rate and are worse if I flare at all, more pred improves them. And as for low mood - constant pain over a long period is soul destroying.

In terms of pred, most of the bad bits can be avoided or mitigated when you know how. And a low carb diet is a good place to start.

[Karenjaninaz in reply to Eily459]

Prednisone depletes magnesium in addition to other vitamins in the body like vitamin D and perhaps B vitamins. Since magnesium is needed for heart rhythm I found extra magnesium helps to abolish them all together. I take 100 mg of magnesium glycinate twice a day. Of course my cardiologist is in the loop.

[TrevConway]

Hi, I thought I’d reply because I’m a 64 year old male who indulged in an eBike last year, although I only cycle similar distances to you twice weekly.

I was diagnosed nearly 5 years ago and thought I’d be on steroids for only a year or so. I have found PMR Pro’s posts very good and these have rightly stemmed my expectations. It seems that some lucky sufferers can be in remission after 12-months, but in your shoes I’d consider that a bonus if it’s possible. I started on 25mg and went up to 30mg of Pred to get my CRP and ESR down. I tapered down to 15mg in my first year, but struggled thereafter. The PMR container in my body kept boiling over. Eventually, about another year on, I was asked if I’d consider Methotrexate to help me taper off the Pred. I have osteoporosis and the side effects of MTX were favoured as Pred exasperates the osteoporosis. I now have an annual infusion of zoledronic acid to treat it. I’m currently on a remarkably low 3.5mg dose of Pred daily and 17.5 MTX weekly. I take folic acid and calcium prescribed. I always suffered pain in my thumbs, which seemed linear with my ESR count. However, I started taking Turmeric which I buy from Nature’s Best (their highest dose) and my hands have been much better over the last 18months. No idea if that is coincidental. I’m doing well and about to meet up with some friends to do a Sunday morning Motorbike ride., so I’m pretty much cracking on with things normally. I still suffer some stiffness and fatigue but just get on with it. To summarise, things could drag on longer than you may hope. Good luck.

[cranberryt]

My gosh. There is no way I could do all that adter my diagnosis. When I was diagnosed, I had been on a weight loss and health journey and had lost over 100 lbs and was going to the gym, doing HIIT and lifting weights. I was in the best physical shape of my life at 48. Then one day I woke up unable to walk. Over the next month I deteriorated to where I couldn’t dress myself, get in and out of the car, roll over in bed, turn my neck. I was started on 20mg of prednisone and felt better in hours. This began a 3 year journey (so far) of tapering down to 2mg, leaning to adjust my lifestyle to deal with the fatigue, etc. I had to switch from HIIT and weights to yoga. There is no way that I can do anywhere near what I used to and that is with my pain controlled most days by the low dose prednisone I am on. Since then I have also been diagnosed with celiac and colitis (having one autoimmune disposes you to collecting more of them sadly). That is my experience. I currently taper 1/2mg every 3-4 months as I can tolerate it.

[Whitner]

Welcome! I started on 20 mg of prednisone in late October 2019 and am now down to 2.5 mg. I have been able to walk a couple of miles 5 times a week, play golf and pickle ball without much problem. Currently at 2.5 mg I have more things hurting so ice is now my friend! I’d encourage you to keep up your biking and do a very slow prednisone taper.

[PMRpro Ambassador in reply to Whitner]

And I'd encourage you to slow and even stop the taper now if you are getting a return of pain. As I keep saying - you aren't heading relentlessly to zero, you are looking for the lowest effective dose. Sounds as if you are there, even gone past it. I't take a tapering holiday for a bit. Whatever your level of pain relief at best - that is where you want to stay.

[123mossie]

I’m late to this post but Hi fellow ebiker. Like you I started on 15mgm & couldn’t make the first taper to 12.5. Remained on 12.5 a few more months before successfully tapering. I’m now on 1mgm, some 2years later. The main things I’ve learned is you must pace your exercise according to the disease activity. Think of it as a seesaw with pred at one end and exercise at the other, you’re aiming for balance. The other thing I’ve learned is patience, the slower the taper the better the outcome. Good luck, read everything & you can fend off any problems before they get going.