Prednisolone Week 10 Update

[Paulx222]

Hi All,

Been a while since I posted about my PMR/Prednisolone journey so here is an update for anyone who finds it useful and a few questions.....

Quick reminder on who I am.....I'm Paul, 49, and I woke up last November with pain and stiffness in my shoulders which got progressively worse over a couple of weeks. This then spread to my hips and I also got pain in my right and then both hands in the fingers.

I saw a private Rheumatologist who diagnosed PMR and put me on 30mg of Prednisolone tapering to zero after 12 weeks.

I then, rather luckily, was given an NHS Rheumatologist appointment and the above regimen was cancelled and I was put on a slower, but still fast taper, 30-15-12.5-10mg over a 1 month period and so here I am on my 3rd week at 10mg....

The situation has been really good.....I mean I have actually been at my best at 10mg.....I struggled for a few days but for the past two weeks all my symptoms of PMR had gone bar painful shoulders performing certain activities.....I mean ALL hip pain and hand pain completely gone.....like DISAPPEARED.....it was great.

What hadn't gone were the constantly leg twitches and pulsing/small shaking of the leg when sitting with my legs crossed.....also when spreading my fingers a noticeable shake was still there. I also still feel a bit juddery on moving which is strange. I have booked to see my GP in relation to these symptoms.....I'm hoping they are med or PMR related but, whilst only an annoyance, they definitely aren't normal for me.

In addition to the above, the last couple of days.....the symptoms seem to be back 🤦

Nowhere near as bad, but they are there again....the right hip pain and pain in hands and fingers.....

So......my question today is.....is this normal? I still struggle with my diagnosis and as some will know, I am quite anxious about other potential culprits so is this possible??

I mean, my medication hasn't changed and I've been feeling good for the past two weeks. Admittedly I did a full week at work this week (teaching) which has been stressful and I have done a lot of walking and I have been waking up after only 5 hours sleep......other that that, not much has changed so why would this suddenly appear to be resurfacing again?

Any way, hope you are all well and still fighting the good fight.

Paul x

[SnazzyD]

If it is PMR, it sounds like you have shot past the dose you need to combat the inflammation from the autoimmune activity that is still ongoing. Once you hit a too low 10mg, the inflammation has built up again. Bang, the symptoms are back. The trouble is you don’t know where between your starting dose and 10mg was your current sweet spot. Your autoimmune activity is going to rumble along regardless of what you do with your Pred. What is suggested on paper often isn’t what suits the patient’s disease trajectory. I don’t understand why you have been subjected to a third rapid reduction plan.

You are also pushing your body through stress, work, possibly too much exercise and sleep deprivation . This lifestyle is not conducive to a smooth recovery unfortunately. Most people can’t sustain both a rapid Pred schedule AND this kind of physical and mental drain. You say not much has changed and I think this is the problem. Fighting the good fight is likely what is causing these crashes.

Regards the pulsing when you cross your legs, it may be because you are constricting the femoral artery in the groin. Tremors can be caused by Pred, poor sleep and a host of other things. In punting you up to the higher dose repeatedly, you may be actually ending up with more Pred ingested than if you had dropped much more slowly. I found Pred effects accumulated and 3 months in, I felt very ‘Preddy’ with buzzy head, shakes etc.

[Pollyone in reply to SnazzyD]

Hi I read the posts with interest as I too have PMR and was given a fast reducing rate - 30 mg initially reducing by 5 mg per week. I requested smaller doses of Prednisolone to reduce slower on reaching 15mg. The tablets initially sent my blood pressure high which necessitated an A and E visit. The lower doses have reduced this effect. I am trying to reduce sensibly. Just wondering if anyone ever resolves their PMR in a few months or is it something to suffer from ongoing as it seems many have had for many years. I’ve been referred to a rheumatologist who hopefully will give advice. My GP says I haven’t clear markers but for the Prednisolone to work initially within 6 hours and the typical aches I know it is PMR. This site is great for information for us newbies!

[PMRpro Ambassador in reply to Pollyone]

I was talking to my rheumatologist about doctors talking about PMR that resolved in a few months - his immediate response was "It wasn't PMR in the first place!". And as a leader in the field, I think he does know what's what!

[DorsetLady PMRGCAuk volunteer in reply to Pollyone]

Not resolved within months no…. Some are lucky if they manage under 2 years, but they are unlikely to be on this forum much if things go according to plan

It’s more likely to be nearer 4 years , and for some even longer… and obviously they are the ones who need more help, which is why you’ll see them on this forum.

You might like to have look at this-

healthunlocked.com/pmrgcauk...

[DorsetLady PMRGCAuk volunteer]

not much has changed so why would this suddenly appear to be resurfacing again?

Actually a lot has changed -you have returned to working and you admit it was stressful, walking more and sleeping less…

—all very good reasons to tell you, along with the timeframe since you reduced to 10mg, that your body is struggling at that dose.

A quick return to 12.5mg may help so try that initially - if not you may need to treat as a flare - as described in this link -using 12.5mg as baseline and retuning to that level -

healthunlocked.com/pmrgcauk...

Hopefully as you become accustomed to working again you will find it easier but it’s not easy especially full time.

What are your employers doing to help you? They have a responsibility to your wellbeing. .

[Paulx222 in reply to DorsetLady]

Thank you for this.

Yes, I see your point.......work.....hmmm I asked for an occupational health appt in December as I stated this was a long term issue and apparently it has been requested but I've heard nothing and it's nearly February.

Not fair really.

I'll give bumping up to 12.5mg again a go in a couple of days. I take your point......and I'll read the flare info.

Thank you 🙏 as always

[DorsetLady PMRGCAuk volunteer in reply to Paulx222]

OH response not good enough…. Are you in a union, or is there a union rep around to have a brief discussion with.. comes under their remit to ensure employers are doing what they should be to help you. And after all it’s in their [employers] interest to do so, they want you at work, not at home on sick leave.

[Paulx222 in reply to DorsetLady]

Yes, I'm in the Union DL.....if I don't get anywhere after half term I'll get in touch with my rep.Unfortunately......it's the students that suffer from me being off and I really feel obliged, plus I've been feeling so much better and then.......as you, PMRpro and others have been warning me about.....the crash seems to have come!!

Going to have a couple of days rest and see where I'm up to and then switch back up to 12.5mg if no better and explain to my Rheumatologist when I go in Feb.

Thanks again

[DorsetLady PMRGCAuk volunteer in reply to Paulx222]

Good-and I understand that you feel a responsibility to your students, of course you do -but you need to be well enough to help them. That’s all we are saying… lecture over 😉

[Paulx222 in reply to DorsetLady]

🤗

[PMRpro Ambassador in reply to Paulx222]

If you make yourself REALLY ill, no-one will erect a memorial to you saying "He gave his all for the students". It is your employers responsibility to make sure the students are taught, not yours, and having been at the receiving end of a dreadful year from a teacher who was ill but plugged on, I say look after you first. She did us no favours.

[Wizards in reply to Paulx222]

Hi Paul I'm a Social Worker by education but when I quit/retired from work due to PMR I was teaching international adults who all came to Canada with PhD or Masters.

I can tell tell you I couldn't give them the quality of teaching that they required.

Guess what, I still in contact with alot of my past students and just on Friday I had a long conversation via LinkedIn with one still offering advice which they took.

I understand how you feel about your students, I've received letters, cards etc of appreciation and just writing this makes me want to cry. I agree with the other advice. You must take care of you. For many of us it's a full time job.

As for your employer do not let them get away with doing nothing. I taught my students this about going into our workforce. To 99.9% of employer's you are replaceable.

I have been in positions of doing 2 jobs and when I left they hired 2.

Good luck

[PMRpro Ambassador]

"so why would this suddenly appear to be resurfacing again"

Various reasons - but the primary one is that the dose you are at is not QUITE enough to deal with ALL the daily dose of inflammation created every morning. That is fundamental. SInce it took 3 weeks to appear after a 2.5mg drop you can be hopeful that 10mg is only slightly too low. But the reduction before was very fast so it might be higher. That is the problem with hasty tapering - it takes time for inflammation to build up and when you are at a dose that is not quite enough, the inflammation builds up in the same way a dripping tap will fill a bucket and overflow sooner or later. But you don't know exactly where you crossed the border.

And a LOT has changed - even the return to work on its own is a massive change and we know that most people who work tend to need more pred to cope well. The dose has changed. Your expectations have probably changed - you become more confident to do things. You walked a lot, you slept badly. And don't discount the stress factor.

You may find that returning to 12.5mg does the job, but if that is what you choose to do, I would stay there for a month or you might have the same thing happen again. And then I wouldn't go straight to 10mg, You have established that what you need is in that region at present, in the same way a chemical titration works, you overshoot a bit and then do the crucial stage much more slowly next time round.

[Paulx222 in reply to PMRpro]

Really fascinating stuff......I just had no idea that it could work like that but yes, I get it, I'm going to have a good think this weekend and switch back I think.

Thanks x

[PMRpro Ambassador in reply to Paulx222]

Unfortunately, it seems a lot of doctors don't understand it either - give the pred, symptoms disappear, reduce the pred as fast as you can. Even more unfortunately - it all too often doesn't work!!!

[Koalajane]

Hi and sorry about the way you are feeling.

Actually was off for 6 months before returning to work and after an interview with Occupational Health who advised a phased return to work., amongst other things. It was recorded that at times I may have to have time off work due to the nature of PMR.

I hope you can chase up OH but I feel you should talk to your Union about your return to work as it may have been too much for you.

Best wishes and good luck

[Paulx222 in reply to Koalajane]

Thanks for this. Good advice.

I may well ask for Union advice but tbf, work have never really pressured me to go back so I suppose I'm my own worst enemy.....

I think occupational health would be useful to speak to so I'm deffo going to chase that up......as others have said here, the issue with work is that, because you look ok......they're expecting you to be as normal and it's not really like that 😂

[random901 in reply to Paulx222]

Please do be careful regarding your work. I had a "phased return" to teaching, then became aware that the real agenda was to make me redundant. At first by subtle signs, then increasingly blatant. I wish I had involved my union earlier. Nearly ended in tribunal, which I was advised not to pursue because of my health. It is so tempting to carry on for the pupils' sake, but you really need to pace yourself, especially being comparatively young. Very best wishes!

[Bluey-1]

You need to put yourself first and pace yourself. Ok, I have GCA not PMR but cannot imagine doing a full on teaching job since diagnosis. Like many on here I put my team first and spent earlier years also teaching and putting students first. I suspect living on adrenaline during stressful periods may have contributed to my current health situation. I can guarantee as soon as you hand in your notice for retirement then plans will be afoot quickly for your replacement. A year or so along the line it’ll be Paulx222 who? Press HR / the union for support, take sick leave if needed plus any OH help for return to work support. This is your entitlement. If you continue to struggle on they’ll let you as it will be assumed you are ok. After all, as many people say ‘you look well’ when in fact you’re not!

[sidra1968]

Thanks for the update

[Hunstonhun]

I think because you have tapered far too fast which is dangerous it’s all flooded back again. There is no quick fix for Polymyalgia. I’m in my 10th year of it now and still can’t get lower than 3mg! You also may have overdone things with working and exercise.

[Freshairfiend]

the only thing I would add to all this sensible advice is to go up to 12.5 asap and then slowly taper by no more than 10 percent every 4-6 weeks using DL’s tapering method, see her pinned post. The NHS has these protocols , which if we don’t fit them, can cause difficulties. I had very similar and DL and others got me sorted.

All the best and take great care of your body and then you will enjoy your teaching when everythings in better balance. And your students will enjoy you more as well.

[blueisgreen]

is it possible you’re moving too quickly to reduce your prednisone?