Fingers Crossed

[Pommygranny]

It’s a while since I posted and I am reluctant to say this out loud but I took my last pred two weeks ago and my inflamation markers have not risen. It has taken me 5 years to get off them with a few relapses in between. Slowly slowly catchy monkey! I am still having pain walking but my rheummy says she doesn’t think this is pmr. We are still investigating the reason for the pain in my legs and I am feeling tired but hopefully that will improve over time. Feeling more positive.

[DorsetLady PMRGCAuk volunteer]

Hi,

The tiredness may well be due to adrenals still struggling a little.. but why does Rheumy dismiss it’s PMR affecting legs?

Not wishing to rain on your parade - but 2 weeks off Pred is a bit quick to assume it’s not.

How long have you had that issue -and where exactly.. .

Hope it’s not PMR -and please let us know what else suggested..

[Pommygranny in reply to DorsetLady]

She thought at first my leg pain was vascular because she and my gp felt there was a weak pulse in my legs. However after seeing vascular consultant she says not and is sending me for mri and thinks it might be arthritis so ordering some physiotherapy for me. Back to the rheumy?? Still in limbo for a correct diagnosis. I have pain in legs which gets worse after walking and settles a little after resting. They initially thought intermittent claudication but apparently not according to vasc dept.

[Pommygranny in reply to Pommygranny]

Recent blood tests also put inflammation markers in normal range

[DorsetLady PMRGCAuk volunteer in reply to Pommygranny]

Good they have ruled out claudication...well hopefully..

As for blood tests, they aren't the be all and end all for diagnosis - and it does take time for them to show up inflammation- which is why we always witter on about symptoms being first consideration...

[PMRpro Ambassador]

I do hope it lasts but as DL says, you can get off pred and then discover that while even 1/2mg kept things under wraps, zero is a step too far and it can take a few months for the inflammation to build up or the markers to rise . How long have you had the leg pain? Obviously a while - but it could well just be deconditioning.

[Pommygranny in reply to PMRpro]

I had leg pain over the 5 years. It never really went away completely.

[Pommygranny in reply to PMRpro]

I suspect the pmr might have been masking something else?

[PMRpro Ambassador in reply to Pommygranny]

Do you have any other low back problems or what could be due to myofascial pain syndrome? I have both alongside my more traditional PMR symptoms and they can be a real pain!!! Literally and metaphorically!

[Pommygranny in reply to PMRpro]

I am having an mri scan. The Vasc consultant wanted to rule out anything else.

[Charlie1boy]

I really hope you are right, and your pmr has gone into retreat.

However, as DorsetLady and PMRpro have implied, it just could be that it (pmr) is clinging on! In my case, it took me three attempts at zero. First time it lasted under two weeks; second time it lasted108 days, and I was starting to count my chickens, but then the familiar pains returned, and I could no longer ignore them!

Finally after a further twelve months, it was third time lucky, and I’ve now been at zero for just short of two years.

My advice: you really have to manage your expectations!

BUT - good luck.

[Bedwell]

well done for pursuing. 3 years on from 15mgs.. am about to reduce from 1.5 to 1.25…. ! No flares at all.. but exhaustion and headaches Lower back… adrenals I assume.. . .. Onwards… hoping! Maybe to be zero by Christmas?! Then what?!

[Lyndaki]

I’m in a very similar place..ie. No Prednisolone for a month after 5 & a half years of PMR & GCA. Every ache gets analysed in my head & hopefully they are just old age/OA pains that have increased whilst I’ve been on this journey & masked somewhat by the steroids! But I am aware that it could return (this is my second attempt) so being cautious. At recent consultation with Rheumatologist he was happy with bloods & said to have another blood test in August & he’d see/speak to me in November. Fingers crossed!!

[Pommygranny in reply to Lyndaki]

Good luck to you.

[Lyndaki in reply to Pommygranny]

And you too!

[WilfDog]

Great, you are off the prednisolone. I hope you get to the bottom of your leg pain. It sounds like it may be something different to your pmr given it has been there all the time you've been on the steroids. Hopefully, something and nothing. You appear to be having many tests, which is good.Fingers crossed indeed for your inflammatory markers. It is early days, but it's great you have managed to come off the prednisolone.

I have been on and off Steroids for 50 years, and a continual stint for 20 years. The last 5 years I've had a couple of heart issues; severe palpatations and an extra heart beat has been found. Nothing major, but the palpatations have been severe, but unfortunately haven't been caught on the monitor. I have conflict between my GP and rheumatologist. My GP wants me to come off the prednisolone for good as he thinks it's causing the problem. My rheumatologist isn't so sure and doesn't want to cause me major problems with adrenals and unstabalise my sJIA. I'm on the biologics and 5mg of pred. My rheumatologist thinks this dose shouldn't be too harmful, but has asked my GP to send me to a cardiologist to see if there is a problem.

I've been unsure whether to reduce the pred or not, and in a quandary as to what to do, so im goimg to wait the outcome of rheumatologist appointment to see if I do get referred to a cardiologist and then make the decision.

Good luck to you, Pommygranny. I hope everything continues to be stable. Its great to hear folk coming off meds instead of going on them! x

[Pommygranny in reply to WilfDog]

Thank you for this information

[WilfDog in reply to Pommygranny]

You're welcome

[PMRpro Ambassador in reply to WilfDog]

My atrial fibrillation is entirely due to the autoimmune part of PMR - it has damaged the sinus node. We know because it started (though unrecognised at the time) about the same time as the first PMR symptoms, 5 years before pred. In fact, at one point, part of the reason for my relatively high dose of pred was because it also managed the a/f. In a study, it was found that patients with PMR were (I think) about 50% more likely to have a/fib than a matched population.

Mine was also very difficult to capture on a monitor, in the end about 11 or 12 years ago I was in hospital for severe back spasms and the go-to treatment here is 3 days of i.v. diazepam plus high dose pred and NSAIDs - all as infusions. I was fine after the first bedtime diazepam but the second night I had a massive a/f episode they couldn't control. They assumed it was the pred and didn't give me any more - but it repeated after the diazepam. It is a rare but known adverse effect. I was kept in until it was all nicely managed and the warfarin adjusted. 18 months ago the bivalent Covid jab set it off again and this January I had an ablation - which worked brilliantly until I had a bisphosphonate infusion a few weeks later and that also triggered some arrythmia though I'm told it is atrial tachcardia not fibrillation. So if you are on a bisphosphonate it could also be that.

Either way, it is naive for the GP to blame pred if you are down to 5mg and it wasn't a problem previously plus you getting of pred after all these years is pretty unlikely really isn't it. Anyone would think the GP will be paying for the cariology referral himself. And proper management of an arrythmia is key to reducing the risk of stroke - whatever the cause.

There are a couple of articles from Bcol about using smartwatches to identify arrythmias and cardiologists are happy to take their traces as evidence.

[WilfDog in reply to PMRpro]

Thanks so much for this PMRpro. You have had a lots of knock on effect issues due to meds. It's amazing how these things are found sometimes, just by chance.

I'm don't think Etanercept is considered a bisphosphonate, so no, I'm not on that medication. They found I had high blood pressure, which I'm now on tablets for which has helped, but not completely. I find it pretty unlikely too, that I'll come off pred, and after chatting to my rheumatologist she doesn't think being on a maintenance dose of 5mg is going to be that detrimental to me, considering if I come off it I could end up with adrenal crisis and other things, so at present I'm sticking to the 5mg.

Hopefully, a referral to the cardiologist will come about but my docs have now become very penny-pinching with their money, and it used to be a fabulous place many years ago.

I have heard how smartwatches have caught and identified irregularities with the heart before. I don't have a iphone, only an android. I'll take a look at your link. Thanks so much for this PMRpro.

[PMRpro Ambassador in reply to WilfDog]

Etanercept is an anti-TNF biologic - not a bisphosphonate which is for bone protection when on longterm pred.

Don't think it must be an iPhone, there will be android based watches too. Fitbits are useful and work with android or iPhones or your computer to download data.

As for your doctors - they are the gateway to a specialist and if you need one, you need one. Far preferable to the way my a/f was identified - and worse still, how my bradycardia was found. I'd reported the dizzy spells but they never manifested on an ordinary Holter nor on the sort of fancy monitor I had with was patient-activated but it was always gone before the recorder kicked in. I was lucky, all I did was faint in the bathroom and hit my head on the radiator and my husband found me. A friend was at the top of the stairs when he collapsed - he broke his neck and is now paralysed from just below his arms down, requiring 24/7 care.

[WilfDog in reply to PMRpro]

This anti-tnf seems to have worked well alongside the prednisolone. I had to come off methotrexate due to it eventuality causing neutopenia. I also started some potent supplements from doterra in 2017 and I'm sure they have also helped with the inflammation as I've not had a flare-up since. Unfortunately I've got extensive damage, but I appear to be stableish in terms of flare-ups, so I'm very reluctant to rock the boat at this stage.

Oh my word! That's awful about your friend. Heartbreaking when it was preventable.

I'm glad yours has been found now considering the consequences that can occur when they aren't. Life is all about luck sometimes.

I will have a look at the smartwatch. They could be a lifesaver.

Thanks for all your information. Really appreciate it

[Bcol in reply to WilfDog]

Morning. You don't need an iPhone for your smartwatch. Samsung do an excellent range of Galaxy Android smartwatches which will give you all you need regarding BP, arrythmias, ECG, oxygen levels etc. The latest is a Galaxy 6 but 4 and 5 work equally well. I have a Classic 4 which gives results on a par from those I get at the doctors. Message me if you want more info

[WilfDog in reply to Bcol]

Morning!Aww. Thank you, Bcol. That's brilliant. I'll take a look and send a message if needs be. Many thanks x

[Raven1955 in reply to PMRpro]

I may be way off base but it seems that pred gets blamed for all sorts of things, but I don't see the justification in many cases. Is it the handy whipping boy?

[PMRpro Ambassador in reply to Raven1955]

I think it is yes! It does do nasty things but they are more at the higher doses - the doses they used originally in the 50s were massive, no wonder patients had problems. But that reputation has stuck. As I often say, PMR itself caused me a load of nasties that are usually blamed on the pred when patients haven't had a vast amount of time waiting with untreated PMR as I did.

[WilfDog in reply to PMRpro]

I agree. Pred does get a bad press. They actually saved my life when I was seven and my mum from going blind with the discovery of temporal arteritis. People forget that the actual disease itself has many damaging effects on the body if left untreated. As long as prednisolone is monitored, I think it's a very useful drug for many diseases.

[Almostaweed]

Not sure if I should add this, as it is not PMR related, but one of my symptoms of Underactive Thyroid (on top of feel generally low) was aching in calves after a longish walk. This was quite different from the aching feet and wrists from PMR and Prednisolone which was worst in the early morning. Rightly or wrongly I blamed the feet and wrist symptoms on Prednisolone and they did subside as I lowered the Prednisolone dose. I wonder if Pred causes reversible or irreversible damage to blood vessels in the feet. I remember looking at my numb blue feet in the bath soon after I went onto 15mg of Pred and feeling scared of the medication. They don't look like that now on 5mg of Pred.

[PMRpro Ambassador in reply to Almostaweed]

I doubt pred damages blood vessels directly - but could do so through poorly controlled blood sugar, blood lipids and blood pressure. Which it is why it is important these factors are monitored and managed to prevent the downsides. However, I doubt that blue feet effect was due to any of those so quickly with 15mg.

You might find this interesting - 30 years old!

ncbi.nlm.nih.gov/pmc/articl...

[Almostaweed in reply to PMRpro]

Thanks PMR Pro. Am seeing GP tomorrow about my feet so will take the abstract of this article along to the consultation.

[WilfDog in reply to PMRpro]

Interesting article given the age of it!

[Polygolfer]

fingers crossed indeed!!! Stopping steroids is an achievement but staying off them for good is the ultimate goal! I guess one can only claim victory after two or so years, even then it’s fingers crossed!!

The side effects of steroids are well documented, both visible, and even more so, the invisible and long term damage they can cause. So well done and hopefully things will remain this way, best of luck!!