Tapering with a high ESR Reading?

[Motida]

My GP rang me yesterday because my ESR reading was 48 in a range of 1-30. He suggested I should increase the Pred.

Because my cataract operation was cancelled for a fourth time yesterday, I dropped to 7 mg yesterday after being told, from 31 days on 7.5mg.

I have read that ESR could denote other infections like UTI, shortness of breath etc, which I get, so I am wondering if I am being prudent in tapering. I am obese as well from the Pred which I am working on.

My blurred vision in long sight may not improve after the cataract operation they told me, if I am ever offered another date (feel jinxed)! So that is why am anxious to taper the Pred as I do not have bad symptoms once the Pred starts to work. By evening I get fatigue but that is because I am awake at 4.30 am and having to listen to pod casts etc to while away the time till 6 a.m.

Any advice would be appreciated. Many thanks

Female 81 London

[PMRpro Ambassador]

A single raised ESR should NEVER result in a kneejerk increase in the dose of pred if you are otherwise not showing any symptoms of PMR. Were you?

ESR is a totally non-specific marker and can be raised by a whole host of unerlying causes. The correct approach is to repeat the blood test a week to 10 days later to establish if there is a rising trend, if there, then a rise MAY be needed but if you have no symptoms, the value remains questionable. Symptoms are ALWAYS king, in both scenarios - raised markers, no symptoms and symptoms with no rise in markers.

[Bcol]

Hi, so sorry, cancellations are a real pain. The problem you have, is that if the pains, even at their present low level, are from your PMR then untreated with Pred the inflammation will continue to build up and, if not careful, you will end up where you started. Think I would be very tempted to go back to the dose where everything was under control for a couple of weeks at least, and only then, think about starting your next taper.

[DorsetLady PMRGCAuk volunteer]

Presumably you had your bloods tested before you dropped from 7.5mg... and yes you are correct in that ESR can be raised by many things, so I'd want another one in a week or so. It could be just a glitch - or an error - but when it is repeated and if it's still high, then it needs to be addressed.

I found my levels increased when I was stressed over my late husband's health - but I never had any return of GCA symptoms.

Maybe return to 7.5mg until second test is done. .. and sorry to hear about cataract operation postponed yet again.

[Motida in reply to DorsetLady]

Thank you all for replying.

In September the ESR was 38 (but was on a flare at 12.5mg) and now it is 48 (on 7.5 mg). I had been on 7.5 mg for over a month before the latest blood test on 14 March.

I have breathlessness and a constant productive cough which they say is due to mild asthma. Have preventer inhaler for that. I am not able to do the deep breathing in and out at chair yoga without coughing. Lungs and heart were checked out though. Assumed then that Pred or the PMR were the cause. I control the cough with Halls extra strong sweets which I always carry.

Stress is mostly controlled - deaths of two friends this month and problems in walking due to neuropathy in feet and ankles. Suspected inherited CMT but there is no treatment. So nothing extra or significant.

I am not sure that another blood test would be allowed so soon with the NHS in such financial difficulty. This time next year is more likely.

For those who observe Easter, I hope it will be pleasant and for the rest of us lots of nice food and sunshine.

[DorsetLady PMRGCAuk volunteer in reply to Motida]

Would say the cough may be partly responsible for high ESR….and I’m sure you can get another test - maybe not in a week… but certainly within the month…. 3 months at the very outside.

So what are you intending to do, dose-wise?

[Motida in reply to DorsetLady]

I will try and stay at 7 mg for the month but if there is a flare go up to 11.5 or 12 at the most for two weeks and then try again at 7 mg. My morning symptoms are manageable and unnoticeable by around 4 p.m.

[PMRpro Ambassador in reply to Motida]

If you have chest problems that is almost certainly causing the raised markers. The NHS isn;t in such a mess that an ESR should be limited in a patients with problems.

[SheffieldJane]

I wonder if you need some temporary medical assistance with your sleep issues? The Podcasts and other electronic solutions can become a habit. I know this from personal experience. You can retrain your sleep pattern. You may be better than you think. Good luck with the offer of another op and it fitting in with everything else. Don’t let this drop. My Rheumatologist doesn’t bother with my ESR with regard to my autoimmune diseases.

[Koalajane]

I really hope you get your cataract op soon. It should help your vision. Not sure why they are being cancelled but hopefully it will happen soon

[Exflex]

“I am obese as well from the Pred which I am working on.”

Regarding your eyesight did they run a glycated blood test (HbA1c). Elevated blood sugar 3hrs after eating is a pointer to diabetes or pre-diabetes and at certain levels can affect eyesight, kidney’s amongst other damage.

[Motida in reply to Exflex]

Thanks Exflex. Just retrieved emails from my junk box for some curious reason.

I have had that HbAIc came at 39 in a range of 20-41 and the GP said I am not pre-diabetic. I was offered another date for the cataract procedure but it is the day after the bank holiday so expect it will be cancelled. Just put it out of mind and getting on with life and reducing weight. The stress of 4 cancellations was too much, but I cant see clearly in the distance so I may have to fork out for it privately at Moorfields. The only draw back is they do the private cases on a Friday evening. Mostly people warn you not to have operations on Friday afternoons in the NHS!

[PMRpro Ambassador in reply to Motida]

That's because staffing is reduced over the weekend ... Cataracts go home usually.

[Motida in reply to PMRpro]

The thinking here is that staff are very tired by Friday afternoon and want to be off home. So that time for an operation is to be avoided for day surgery if possible!

[PMRpro Ambassador in reply to Motida]

I could accept that if NHS staff worked a 9-5, 5 day week, But my daughters work an average of 37.5 hours a week which can be 3 shifts one week and 4 the next, starting at 8am and finishing at 6 for the nurse who does work days Mon-Fri and any time in the 24 hours and 7 days a week for the one in the ED and she can have worked her week by Tuesday afternoon. The nurse might work Friday - but she might not.

[Motida in reply to PMRpro]

Wow that is long shifts which your daughters do. How do they keep going?

I had to give in and accept that the stress had caused a flare in my PMR. Started on 11 mg from 7mg yesterday and like magic, by 11 a.m. I felt on top of the world and worked on my allotment in the sun. I know Pred is not good for our other organs, but to be free of pain and fatigue is so wonderful. When I had to sit down in the supermarket on Monday and could hardly get home, I realised it was a flare. Even my neuropathy in my feet which hurt a lot, are much better. Mood has improved too. Magic for a couple of weeks and then will try and go back to 7 or 7.5mg.

Your advice on tapering and flares have been so supportive. Thank you both and everyone else in the community.

[PMRpro Ambassador in reply to Motida]

10 and 12 hour shifts are standard practice for front line staff in the NHS. And they don't just drop everything at their nominal finishing time - if they are in the middle of a case, they often stay to finish the process off. As a paramedic, the ED one has worked a 14+ hour shift having been sent to a call an hour before knocking off time that then required a lot of work on scene, a long drive to the ED and possibly a wait outside the ED. And they may well not have had their half hour meal break either if it was busy.

I'm not sure what makes you think pred is bad for other organs - it is less of a problem than NSAIDs for heart and kidneys and unmanaged inflammation is also doing damage to organs. It isn't as simple as pred bad, no pred good.

[Motida in reply to PMRpro]

Glad to hear that about Pred. I suppose I wrongly attributed breathlessness, water retention (moon face and big waist) blurred vision to the drug. I need to understand much more about steroids, but for now I am enjoying their magic.

When we read what your daughters have to put up with you can understand why they have to leave or go to Australia or Ireland. I person who has worked that long will not be able to keep going in top gear. Sometimes you can see the tiredness in their faces and sometimes I have asked how long they have worked and been shocked. It is shocking and we need to call it out a lot more, but who listens?

[PMRpro Ambassador in reply to Motida]

It probably works better than more shorter, bitty, shifts for rotas. And working 3 days does give you a 4 day weekend ...