Sick days

[Paulagcl]

I saw my rheumatologist today. He does not believe in increasing prednisone on sick days or when there is more stress in our lives. I guess each of us have to make our decisions about the variety of advice and information. Of course, I am also on Kevzara and I don't see people in our group mentioning that, so I guess it's not yet in wide use since at least in the USA it was just recently approved for PMR. However, he did put me on a slow taper schedule, which I would not have known about were it not for you guys!

[SnazzyD]

I hope his “belief” extends to some sort of evidence base regards the sick day rules. That would be more useful than just a pronouncement. I wonder if they have ever spoken to an Endocrinologist.

Good luck with the taper!

[Paulagcl in reply to SnazzyD]

I don't know. We don't know whom our doctors have spoken to or what they have read. Also, I am on Kevzara in addition to prednisone so perhaps that makes a difference. He told me to stop the Kevzara if I am sick. I'll ask my primary care doctor, and also I have a friend who is a retired endocrinologist. However, I don't feel he would make a " pronouncement" based on nothing -- so far I feel confident in him medically. He has double checked anything he felt doubt about with my primary care doctor, such as whether I should go on a statin for cholesterol. He thought I should, my pc doctor doesn't (he did a heart scan to view the extent and pattern of the cholesterol deposits) and feels I am low risk and the side effects, which can cause muscle pain (last thing someone on PMR needs!) are not worth it.

[SnazzyD in reply to Paulagcl]

If you do find out their rationale, please tell us because it goes against all advice given normally. They might be referring to when doses of Pred are much higher than 10mg.

[Paulagcl in reply to SnazzyD]

Possibly. I emailed my endocrinologist friend and he usually answers pretty quickly.

When I go above 10 mg I have severe dizziness, so that might be his thinking. When that happened he immediately reduced me from 20 to 10. So far so good as far as side effects but of course the long term ones are another story. But right now, I feel great on 8. It's when I went down to 7 that all hell broke loose -- no pain at all, but exhaustion.

[DorsetLady PMRGCAuk volunteer in reply to Paulagcl]

It's when I went down to 7 that all hell broke loose -- no pain at all, but exhaustion.

Adrenals -and SnazzyD knows all about them- maybe have a look at this link-

healthunlocked.com/pmrgcauk...

[Paulagcl in reply to DorsetLady]

Yes, that seems to be the breaking point, and the explanation of how the adrenals work does explain that. I hope that tapering more slowly will help with that -- stay tuned! Today I started on the every-other-day regime.

[SnazzyD in reply to Paulagcl]

You might find alternate days a bit hard on the body. I tried it and it felt like my body wasn’t in Pred deficiency long enough to realise it had to switch on its adrenals so I just felt bad on alternate days with not much change overall. Worth a try, people do use it, but keep an open mind. I did 0.5mg for a long introduction period ramping up the number of days on the new dose and then waiting to settle for at least 2 weeks before starting the next. Each drop took anything for 6-14 weeks. The lower I got the slower I got.

If you are getting low cortisol symptoms be prepared for longer than you think. Patience really is a virtue here.

[Paulagcl in reply to SnazzyD]

Well, will see how it goes. I started today down from 8 to 7 and felt fine, got my Covid shot, no reaction. He said to do this for about two weeks and then stay on 7 for a couple of weeks before doing 7/6 etc. but to modify it depending on how I feel. The fact that I am also taking Kevzara might make a difference. I am so far given that it was just approved for PMR among the first patients here to be on it for PMR. I've so far done well on that as far as no bad reaction. At first I had to use syringes because that's all the drug company would give me on the program where I don't have to pay for it, but now they will start giving the injection pen, so that's a relief! Anyway, thank you, Snazzy! what's your real name? Mine is Paula.

[DorsetLady PMRGCAuk volunteer in reply to Paulagcl]

For the record agree with SnazzyD on the alternate days routine.

[Paulagcl in reply to DorsetLady]

One thing I am seeing on the profiles is that many people have other health issues in addition to PMR. Luckily so far I don't, so maybe that affects what advice I am given.

[Paulagcl in reply to SnazzyD]

I heard from my endocrinologist friend. He agrees with my doctor. He said there is a very wide range of responses to an illness and he waits to see if he feels the person needs additional prednisone. Some do, some don't.

[SnazzyD in reply to Paulagcl]

That has been my approach, see how it goes. I have never just doubled up or whatever just in case because my reactions to illnesses have not been predictable. In your original post I thought you meant by not believing in sick day rules as never increasing Pred for illness.

[Paulagcl in reply to SnazzyD]

It's hard to be clear at time writing like this! I should proofread. Your original impression was correct. My impression was that the rheum dr does not increase prednisone for illness. He said not to do that, but to stop the Kevzara because that's dangerous if one has an infection. I did not press him further on this--after all, I haven't been sick so far, knock on wood! And I don't have any other health concerns. So I am assuming he was talking about me specifically, not a general statement, and that he might be in favor of waiting to see if I needed it. However, should I come down with something I of course would ask him again, and also my GP, who also treats patients with PMR. He's the one who suspected it in me, but the blood test came out with normal inflammatory markers. So for a second opinion, he sent me to the rheum and by that time the markers were high. So far I don't have reason to assume I'm not in good hands. We were having a communication problem but I was straight with him about that at my appt this week and I think we made some headway.

[Paulagcl in reply to SnazzyD]

Snazzy, my primary care doctor (who in the arrangement in my health care system coordinates all my care, input from the specialists, etc) just wrote in answer to my questions about sick days. He said they do not do the sick day routine unless the person is ill enough to be hospitalized. Be careful with phrases like "belief system." Doctors here give educated opinions, just like your doctors do.

[SnazzyD in reply to Paulagcl]

Fair enough, poor choice of words.

[Paulagcl in reply to SnazzyD]

I am sure he reviews the evidence and makes his decisions accordingly. This is a group of doctors that includes endocrinologists. I have no reason to doubt him. So far the taper is okay. I don't notice any change day to day alternating the dose. The test will be when two weeks is up and I stay on the lower dose.

[DorsetLady PMRGCAuk volunteer]

Hope he never gets PMR then! Or sick or stressed! But as least he’s got a modicum of sense, let’s hope the slow taper works.

Might be interesting to those in US to hear how you get on with Kevzara….doesn’t apply to those UK - well not yet, but one day maybe….

[Paulagcl in reply to DorsetLady]

He seems to be extremely concerned about the side effects from prednisone, maybe especially since I already have osteoporosis. Also, I did not tolerate a dose over 10 mg well so it's unclear what would have happened if my temporal biopsy had been positive, though he is still watching out for it. He said doctors here have been anxiously awaiting Kevzara for several years. It was available for arthritis but not PMR. Something to do with what insurance would pay for. The drug company is supplying mine. I have a friend also recently diagnosed but her doctor isn't using Kevzara. My doctor is young, and my experience in this country is that the younger doctors are much more on the cutting edge of medicine. I had two hip replacements and though the first one went fine, the second one is a new procedure and much better -- a small incision that didn't cut through muscle. The surgeon was just 37 and is now teaching the procedure to others. Anyway there is a lot of varying opinion out there.

[DorsetLady PMRGCAuk volunteer in reply to Paulagcl]

Hope the Kevzara works for you, and sorry to hear you don’t tolerate Pred …so let’s hope you don’t get sick or stressed….but that’s not always in your hands. And yes I agree that many young doctors are more on the the cutting edge , but they still don’t have all the answers…

All the best🌸.. and as I said please report in Kevzara as it’s something new in PMR treatment.

[Paulagcl in reply to DorsetLady]

Of course not, but neither to some of the older ones! That's why we often get second opinions. One of my cousins had a neck issue and went to SIX different neurosurgeons in New York and got six different opinions as to what kind of surgery to do. Finally he went to the Mayo Clinic, our most highly thought of clinic here, and they said they wouldn't do surgery at all! What kind of maniac goes to SIX, you might ask? Well, that's my cousin!

[Paulagcl in reply to DorsetLady]

Actually I am right now in a very stressful situation, but the techniques for managing it seem to be helping. Hopefully I won't get sick in order to test that out! I do seldom get sick , knock on wood, or not for long. I'm sure if I were having PMR symptoms on the dosage I'm on he will increase it -- he already did when I reacted to the taper.

[DorsetLady PMRGCAuk volunteer in reply to Paulagcl]

Okay.. well at least he’s listening to you..and really as patients that’s all we want isn’t it….fingers crossed things go well in future.

[Paulagcl in reply to DorsetLady]

So far I'm fine on the Kevzara along with prednisone. Will see as I taper the pred.

[Paulagcl in reply to DorsetLady]

I am sure if I get distressed he will deal with it. He 's been responsive so far. We have a website situation for this medical group and if I email in the morning he responds by afternoon if I ask a question -- in my appt yesterday I think we made progress with communication styles. It was a kind of poignant appt even though we didn't talk about it, but he looked very stressed -- he's Syrian. I'm Jewish with a lot of family in Israel, and so there we were, both worried about family there.

[DorsetLady PMRGCAuk volunteer in reply to Paulagcl]

It certainly is a very worrying time. Hope all family safe.

[Paulagcl in reply to DorsetLady]

So far they are safe (they live in Tel Aviv) but of course the situation is horrible beyond belief, on every side. This has been building and building and there seems to be no solution.

[Paulagcl]

I'll keep you posted!

[Thirkelly]

I've just had to apply sick day rules for the first time in over 2 years since pmr diagnosis, after advice from GP. My understanding is that inability to retain prednisolone for instance can mean an emergency injection is vital. Not something that seems open to interpretation. Also I thought that at lower doses adrenal insufficiency can be mistaken for other illnesses hence increasing dose.

[Paulagcl in reply to Thirkelly]

Well, I ca n't worry about that now-- maybe I won't get sick! I am sure if it's necessary, my doctor, or my GP, will handle it. I don't want to start worrying about something that hasn't happened or might not happen -- if I'm sick I would call my doctor and see what he tells me to do. I am seeing that different doctors have their own protocol, and also we are writing here from varying health concerns, many people with others in addition to PMR. So far, thankfully, that's not my situation.

[Thirkelly in reply to Paulagcl]

Apologies if I sounded alarmist. That wasn't my intention.

[PMRpro Ambassador in reply to Thirkelly]

It isn't an inability to retain pred - it is purely that taking more than about 7mg pred suppresses natural production of cortisol to prevent too much corticosteroid in the system/ Think of it as a bit like the wood burning stove producing heat keeping the central heating boiler on standby, In a sudden emergency there is still potentially a shortage of corticosteroid, the pred dose is fixed and the adrenal production is blunted, And that can pose a problem.

[Thirkelly in reply to PMRpro]

Thank you, that's really helpful to have it explained that way.

[Paulagcl in reply to PMRpro]

Yes, I understand. However, this doctor is the head of rheumatology one of the three major research centers in this country, so unless evidence turns up to the contrary, there is no reason to doubt his opinion and that he is taking my medical history into account -- so far that has been the case, and he and my GP are in the same medical system and are in contact.

[PMRpro Ambassador in reply to Paulagcl]

I wasn't replying to you but Thirkelly.

I'm glad you have such confidence in your doctors.

[Paulagcl in reply to PMRpro]

I feel very lucky with my primary care doctor. He's been very responsive and supportive, and he is the one who suspected PMR when no one else did. I do as much of my own research as I can so that I can bring in questions, and he is very quick to admit he doesn't know, if he doesn't, and he will research it and get back to me. I feel relieved that he is overseeing everything. Recently the rheum wanted me to take a statin because my LDL cholesterol is high, but the pc first wanted to do a Ct scan to show if there was actually a lot of plaque on the artery walls, and the scan showed that there isn't. He didn't want to add another drug that causes muscle aches unless absolutely necessary. And what I have learned from this group has been really great It gives me the questions to ask.

[PMRpro Ambassador in reply to Paulagcl]

A cardiologist here was adamant I needed a statin - the first made me ill and I wasn't happy but I stupidly gave in to her, my usual one wasn't as bothered, I did fine for 3 weeks - and then it hit with a PMR flare. The cardiologist had also booked a carotid scan to look for plaque - she did it, she was very uncommunicative about the result showing it was as clean as a whistle. However - my notes now clearly say, NO STATINS!

[PMRpro Ambassador]

Hmm - he's welcome to his belief system. I prefer to listen to endocrinologists in this context.

Being on Kevzara makes little difference to the reality that in adrenal insufficiency you are likely to need corticosteroid support in certain situations. Kevzara will mean you don't have the problem of "is my pred managing the PMR?", but "is my pred enough to prevent an adrenal crisis?" remains. That is related to some extent to how long you have been on pred - after only about 6 months then adrenal function should return fairly well although your age also relates to that, it sometimes struggles in older patients even after a short period of inhibition due to pred and it doesn't return overnight.

[flygirl65]

Hi Paula

Donna here from California. How are you doing on Kevzara? I was afraid to take it for the possible side effects. Having said that I’m stuck on 7mg of prednisone and still have neck and shoulder pain. Just went back up to 10 mg to see if it will help. I have an appointment next week with a new Rhuematologist and am so hoping for advice! I was hoping to wean off of prednisone faster but I’ve read enough stories to know some of us just aren’t that lucky! Been on prednisone since June 2022!

[Paulagcl in reply to flygirl65]

Hi Donna -- where in California? I'm doing fine on Kevzara -- so far no side effects. Obviously like all drugs there are long term effects but it seem prednisone is worse. I was diagnosed in April and he started me on Kevzara right away (took a couple of weeks to clear insurance etc). Now I am starting to taper, 8 mg one day, 7 the next. When I went straight down to 7 I was beyond exhausted. Still no pain, but could hardly function. So he's trying a slower taper with me. Will keep you posted. Wish there were a way to communicate directly with someone -- it's cumbersome on this site trying to find and answer a post.

[PMRpro Ambassador in reply to Paulagcl]

"Wish there were a way to communicate directly with someone -- it's cumbersome on this site trying to find and answer a post."

There is - you can "converse" directly with someone using the Chat function - that is private and only seen by the participants, you can have up to 10 in a group. But that isn't the intention of the forum , it is for everyone to be able to benefit and you can follow a thread in various ways including being notified of every reply to it, It is up to you what setting you choose to be notified of replies and then a notification comes directly to you in your email Inbox and links you directly to that reply.

[DorsetLady PMRGCAuk volunteer in reply to flygirl65]

I was hoping to wean off of prednisone faster but I’ve read enough stories to know some of us just aren’t that lucky

Not a matter of luck.. it depends how active your PMR is and on how you taper and 18 months is not long for PMR.

1mg every 4-8 weeks recommended once you get below 10mg.

Have replied elsewhere re email information.

[flygirl65]

I agree I’m okay with emails.

Admin comment: Email address removed for privacy. If you wish to share emails, please do in a private chat.

[DorsetLady PMRGCAuk volunteer in reply to flygirl65]

Please don’t enter your email on open forum (for your safety and privacy) use the Chat facility -just tap on Paulagcl name above -takes you to profile-then select chat

[Paulagcl in reply to DorsetLady]

Sorry --I didn't think I opened on open forum --Ithought I opened and that it went my private email, which it did for both of us MaybeI am not understanding something

[DorsetLady PMRGCAuk volunteer in reply to Paulagcl]

This post can be read by anyone -so HU advise not to put anything on here that can identify you personally.

The Chat facility is just between you and the other member(s) -so is safe to add more personal details (within reason).

[Paulagcl in reply to DorsetLady]

sorry. We will do email.

[DorsetLady PMRGCAuk volunteer in reply to Paulagcl]

No need to be sorry…. Just HU protecting your identity…. 🌸

[Paulagcl in reply to Paulagcl]

Got it! I'm on the second day of alternating between 8 and 7. Will see how it continues to go.