Not sure if having my first real flare

I was really paranoid about GCA at first. Any headache, any sensation my scalp, changes in scalp, I was panicking.I think most of the symptomas where phychosomatic or just the PMR not quite under control yet. I asked on here about what people that were actually diagnosed with it experienced and I was put at rest by their responses as what I was feeling was nothing like it.

I have literally done no exercise for a year now as first I had the undiagnosed PMR, then it took the whole months to figure out the right starting dose, then I had piriform is syndrome, I think and now a pelvis with two fractures. Once I understood the concept that the prednisone only aliviates the pain 70,? and that while you have the condition you are not able to do all the activity you were used to doing pre PMR, I have pretty much accepted and am OK with it.But yes even knowing all this, that flare or withdrawal or over exsertion or whatever it was , was pretty scary.I felt sicker than ever I think. My 9 year old granddaughter. was about to call 911, it's the first thing she learned at school in the US..Lol ...Its amazing though, how just one mg of the stuff can make such a difference!!

I'm at 16.5, too and I was diagnosed back in Oct. Eileen made me realise that tapering isn't a race so I'm staying on 16 till I'm back in Spain without extraordinary obligations although I'm keeping the granny dutie to a minimum after that scare!

i was dx with gca not pmr. I did not have any of the obvious symptoms of headach and gca dx  definititiely by temporal artery biopsy. I had stomach issues, swelling in my face, anemia, and depression. Nightsweats and low grade fever nighlty, extreme fatique. It took 4 months to get diaganosed and a week in the hopsital to  boot.I was 53 at the time.Some people had had GCA and never treated and it goes away. So how weird is all of these diseases.

Actually I had malaise,loss of appetite (which I loved,) , night sweats, fatigue and pain in my hips but not shoulders , prior to my DX. Eileen suggested it may have been sub clinical GCA but since all the symptoms subsided with 20mgs, I guess it was PMR. What a confusing condition this is! ITV seems all they know about birth conditions is that Prednisone is the only

Sorry...... The only treatment for them.

The local rheumy here is of the opinion that for many patients with GCA 20mg is enough to manage the symptoms. It all depends which arteries are affected. It is only when there are cranial symptoms that there is need for higher doses - to protect vision. Lots of people with "just" PMR have similar symptoms to yours - without ever having headaches and "stuff". I did - and my shoulders didn't work either!

I didn't get more than 20 mg for pmr and GCA. I did not have any pain before or during those 3 1/2 years it took me to get off pred. I was probably lucky not to be blind.

Oops... My swiping today is bad, sorry..

I read a paper based on a study that says that patients that start on 15 mgs or less have a reduced chance of developing GCA and a better chance of a shorter duration of PMR. Just goes to show that this is still a mysterious condition !

I can't even begin to express the gratitude I feel for this forum.My peers in Spain always tell me stuff like " you better be careful what you read on the Internet" or "don't trust forums, it's the worst thing you can do"..Duh???? I don't bother telling them that I have almost immediate response , for free, to any question I have by THE (well I'll say one of the, to be safe) authority on PMR, who addresses me by my first name..What a luxery it is! I did tell my Brit and American friends, though and they are amazed at Patient.😁

Heaven only knows what they based THAT on! Do give me the reference!

I started on 15mg - so did a lot of people I know. And some developed GCA later, I probably had GCA but we will never know. Some of us have still got PMR symptoms after several years (some well over 10 years I might add!). And there are a few people who have had PMR twice. One in particular started at 30mg first time round - if I remember rightly, she sailed through about 3 years and off pred. Second time round she was started on 15mg - but struggled to reduce and get off pred for longer. 

academic.oup.com/rheumatology/article/49/4/716/1789072/Can-the-prognosis-of-polymyalgia-rheumatica

This isn't the one I read, still looking for it but this one is one mention the better prognosis at starting dose not more than 15mgs.

Eileen, I've been looking for that article all day and can't for the life of me find it! Maybe I misinterpreted something or dreamed it up! I could have sworn I read it! Going through my search history, see if I have any luck!

I think maybe the fact that I had a lower body vasculitis is why I didn't respond to 15mg, at which point the rheumi wanted to rule out PMR completely and take me off the pred. I took it upon myself to go up to 20 and the symptoms subsided.

Did you have a biopsy to confirm your GCA?

Hmmm - must ask Sarah about that! The only reason I can think for longer steroid withdrawal there could be that doctors may tend to be a bit gung-ho about reducing from higher doses and cause flares - or that patients who require more than 15mg often have more severe disease I suppose.

I see she thinks that too! 

However - this long term PMR patient started on 15mg (albeit 5 years late), did not lose weight, did not have elevated ESR/CRP etc etc. So there you are - the exception proves the rule 

Yep, it does...I'm realizing most rheumis don't like exeptions..😂

I'm wondering whether the time we spend with symptoms pre DX count toward the duration of the disease.i think I've had the symptoms for at least a couple of years but was told it but was Osteoarthritis. Now, when they did all the imaging tests for my broken pelvis, they told me my hips , at least , which were the most painful (though my whole body hurt) are not arthritic at all!

A lot of people on here talk about very long duration when all the literature talks about 3 years as average.im guessing they aren't factoring in the pre DX time, are they?

I'm sorry, I forgot my main queston: does starting the prednisone early on have a positive effect? My husband is proud of the fact that I went cold turkey for so long. He says it saved me from having to take steroids those years. I say the opposite- the sooner I would have started, the sooner I would have at least tapered to a low, side-effect- free maintenace dose.

Your husband needs to meet me! Suffering for years without management of the pain is nothing for anyone to be proud of. I lost 5 years of my life, I was unable to do things I wanted to without a lot of pain - and a lot of things I didn't particularly want to but needed to like shopping   If I couldn't park close by so I didn't have to walk more than a couple of hundred yards maximum I couldn't go places on my own. I was cut off from others in the end when I had to stop driving for a while (totally unrelated reason and due to a doctor not listening to me) and became withdrawn and depressed. I was immobile (high risk factor for osteoporosis) and gained weight - it isn't just pred that does that. My bone density on pred is fine. There are a lot of so-called pred side effects that could be listed as PMR side effects!

I had PMR for 5 years before I got steroids - not out of choice believe me! I will have been on pred for 8 years come July. In the entire 13 years I have had pain and stiffness - now only if I am not on the right dose of pred. 

I have no idea what it is that persuades doctors that PMR lasts only 2 or 3 years. It does for about a quarter of patients. About half take 4-6 years to get off pred - the rest of us are even longer. There aren't that many of us but we are there. The standard German rheumatology textbook says PMR lasts 5 years on average. Here in Italy there was a study that reckoned about 1/3 of patients are still on pred after 6 years.

There are doctors who insist that if it lasts more than 2 years "by definition it isn't PMR" - I did ask one of them WHAT definition, he didn't reply. Of course, if the doctor believes that and his PMR patient doesn't recover and get off pred in 2 years - they will say it wasn't PMR in the first place and change the label to preserve their belief (and reputation). There are a lot of people who have been told they have fibromyalgia - which somewhat conveniently doesn't respond well to anything - or are told it is "all in their head", somatism or depression. I looked my GP in the face and challenged him - that was his label for me until 15mg of pred achieved a minor miracle. 

Constance asked about pet hates on a thread the other day. One of mine is doctors who trot out a label (like OA) for a patient's pain without doing the appropriate investigations. I had hip joint pain - it was bursitis. Not OA.

And I forgot to say - PMR comes when it likes and goes when it likes. There is nothing available at present that will change the course of the disease, all you can do is put a sticking plaster on the broken nail to stop it catching! In this case, the sticking plaster is pred and it manages the inflammation - the effect of the disease not the cause - so you can have a reasonably comfortable life in the meantime. 

Since the pred doesn't affect the course of the disease - taking it early or late won't affect the disease process. But it will make an enormous difference to your quality of life.

Thank you!!!!!!! This is exactly how I feel . I am surrounded by friends that are docs who make me feel like I'm some sort of PMR obsessed nut case in social situations when they all me how I'm doing.

I know in said I wasn't going to bother talking about PMR with husband any more but I need him on board for now for the prescriptions. He told me that he had treated 2 cases of GCA in his 45 years of practice and both cases went into remission in one year! , I told him either it wasn't GCA or his memory is going , going...gone!!

I, too diagnosed myself by reading ((mainly this site) but not until my symptoms became so bad I was literally bed bound, probably in part due to severe depression from suffering from the symptoms for so long and thinking that OA was something that just got worse and had no cure. I had really high CRP for a couple of years at least and no doctor I saw for my pituitary apoplexy had nothing to say about it..I kept complaining of fatigue and sore muscles, etc..I thought it was a pituitary gland not working because every brain MRI I got said the gland was getting thinner each time and I thought I had some sort of hormone deficiency ( I haven't ruled that out completely but that's a whole other story).

I thought till very recently that my problem was all due to letting my husband control my health issues bit teaching all the posts on here, im realizing that the problem with modern health care is that docs only rely on numbers and images... They have no interest in what the patient feels. It's sad that all I need a doc for lately is for the prescriptions for meds and dose that I decide are good for me!

Amen! I was going to forward this last post of yours to my hubby and I love your boken nail metaphor but I'm afraid it'll only confuse him further as his English is getting worse with age as my Spanish is! 😲

"I thought I had some sort of hormone deficiency"

You ARE monitored for endocrine problems, aren't you? There are people who believe that the entire pituitary/hypothalamus/thyroid/adrenal/etc axis plays a significant role in PMR. If one bit is out of kilter - it affects the lot.

Perhaps you know someone who could translate it for you? It's only a question of finding a simile that works in Spanish.

Well, if you can call getting an yearly MRI and some basic blood work that that shows that the pituitary gland is working fine despite the gland showing that it is shrinking on each MRI , I guess I am being monitored.I don't trust the endocrinologist or the neurologist ( in this case not my husband ) but what can I do? I don't know anything about hormones but there are some that show they are deficient or off like GH and parathyroid, they just tell me it's normal for my age..I had exactly 0 ..(Zero )of vitamin D (probably what caused the osteopenia I now have), I took it upon myself to get it up to optimum level but I don't know what else I can do!I really don't know why they are down playing the pituitary apoplexy I had about 1O years ago.

Was kidding about my Spanish, I've translated and edited all the papers he has ever published in English ...It's really futile to try and convince him anything new.

Not sure if it's Catholic thing but he has always had a problem with managing pain properly..Has no problems with pushing statins, etc.. when I don't need them but when it comes in to something that you take to only manage pain, it's like you are comitting a sin...He is not a practicing Catholic but it's probably some trauma from the Franco era..hahaha

 

I join the feeling of outrage.   At age ten I was told the vomiting and pain I experienced after taking aureomycin was some kind of malingering.  I have never forgotten that one. 65 years ago.  Miraculously the vomiting and pain stopped when they finally switched to teramycin.   By then I was quite dehydrated and needed to be hospitalized.  It was a lesson that brought me self doubt and caution if not distrust of medicine.

I just commented somewhere else that any doctor who told me they weren't interested in the signs and symptoms of my clinical history would be history for me - and he was.  Here in Europe of course it won't affect their income - but it might make my life more comfortable in the case of PMR and save my life if they have got it wrong.

Disputing the possibility of a reaction to a drug is one of my real bugbears. If something nasty starts soon after starting a medication - it is the medication to blame until something else can be identifed as 100% the cause. It can kill - or at least make you very ill, as you were.

Well, when my order of 5,000 unit capsules of vitamin D3 came in the mail, my husband had a conniption.. warning me that I was going to die of an over dose! He still believes the dosages be learned in med school in the 60s. He is probably deficient himself but refused to take a sufficient amount.

dosagev

Anyone would think you were intending taking them all at once! The GP has given OH a weekly dose of 25,000IU, to be taken all at once. And she regards that as doing things slowly!!!!

You are so right.. There aren't many doctors out there that actually listen to the patient anymore.. We are just part of their statistics... It's no wonder that when they publish a list of first professions to become extinct due to technology, one of the ones always up there on the list is the medical doctor.

I took 50,000 a week for several months and I'm still lat 50 when they say the optimum level is + 70 . I guess it goes by body weight plus there must be a reason I'm more resistant as I love the sun and have never used sun screen and I was extremely deficient. I have darker skin than most PMR sufferes ..I'm 1/4 Japanese.

I have to say my Rheumy does listen.  I sent her an article on circadian rhythms and Glucocorticoids.  She thanked me enthusiastically.  I have been splitting my dose, 5mg Pred when I got up in the middle of the night to pee so that I'd have something on board for the cytokine shower.  I take the resot of my durrent dosage, 11,5 mgs at 8 am with breakfast.  She's cool with that and is exploring Rayos for me.  I just found out that Kaiser Medicare Part D will cover part of the cost. It will cost a few hundred dollars every three months,  but I realize I can't continue to take the Immediate release Pred. at night.  I've been taking it on an empty stomach, not wanting to eat at 2am.  That's not so good for my digestion.  Last night I skipped the middle of the night dosage, and sure enough my wrists and hands were  a bit more symptomatic in the morning. 

Next step is to figure out dosage if I need less than 1mg.  Can't cut the coated delayed release pill in half without ruining the DR effect. 

I was deficient, also despite being out in the sun without sunscreen during the late morning - if you don't produce vit D you don't produce vit D. If you don't produce enough and it goes on long enough the body stocks will be so low that that "sump" has to be filled before it spills over into the blood to be measured. But so many doctors don't think about that. I've seen it a few times just with patients on the forums - 2 months high dose therapy, vit D fine, 6 months later it was back in its boots. 

Hindags - that's where the Dead Slow approach comes in. It does help at the below 1mg level.

A glass of milk to wash it down may be enough - that is what many pharmacists suggest.

I'm confused. Does the Dead Slow use one mg steps only averaging out slowly by introducing the new 1mg lower dosage one day then old four days....equaling .20 over five days? I've read the formula but haven't put numbers to it until this moment.

If I were able to digest milk. Even lactaid milk gives me trouble. But I could try.  Should IR be whole milk for the fat that aids the Pred digestion? Would yogurt work? I do a bit better with that.

I suppose you can look at it that way and that is how the gentleman who had the original idea did I think. 

The basic idea is to present your body with the new lower dose for one day at a time and then go back to the dose it is used to. I find after 3 single days of the new dose my body doesn't protest so much.

We usually suggest yoghurt - but it requires a bit more effort than a glass of milk at 2am! It isn't anything to do with the fat aiding digestion of pred - it is just to line the stomach to reduce irritation and acid problems.

Thank you again.  I feel repetitive.  So much to thank you for. And this whole community of intelligent and open people willing to share and popnder together and vent as needed too.  So helpful.

I agree 100? ..If it were not for this site and the amazing Eileen, I would still not even have DX for PMR..I wouldn't know how to taper, pace, or not fret about tbe possibility of having 'GCA.No rheumi told me any of this..In Spain, DC's have to see a new patient in 15 min and tbe subsequent times onlyb10 ,minutes.

Sorry, must have got the wrong button..

I remember when my husband first started à practicing neurology , the recommended time established by the WHO was 40 minutes. With 10minutes, by the time you walk in and sit down, your fine it's up!

So for a condition line PMR which is so diverse in a symptoms and Prednisone effects, of to aren't inn thid or another simila web site, you're screwed.So many new people's postsI read on here and I'm appalled at how they are treated by their doctors. They a being vgiven the rong dose or

Really sorry about bad typing so I'll stop ranting...I'm on a small phone and fingertip too big for the letters!

Come here - we must be about 20 years behind and I hope it stays that way! It probably won't - there is a shortage of doctors here too but they realise it won't cure itself, they have to work on it with more money and incentives. They have just attracted an absolutely top guy from Milan by agreeing to implement a programme that is his dream for a particular illness. Milan weren't interested.

I think the allocation here is up to 30 mins with various things done as standard before you even get in to see the doctor if they may be required. The eye department is manic with a 2-3 month wait for an appointment - but you get a good 15-20 mins with the doctor followed by a wait while the drops work and back in for another 5-10 mins. I have spent a good 45mins with the head of medicine here - we were discussing PMR as equals...

They allocate money better in Italy, I think. In Spain, patients cone with a shipping nah full of x-rays, MRIs and scans.. They all go to various hospitals to see docs of the same speciality, etc... Then they take different meds that all the docs prescribed... Morning is connected, they are starting to computerize everything but I know some doc's that still refuse to use a computer..Hahahaha... Until those guys retire, everything will remain caotic.

Tbe orthopedist I saw, after getting 2 x-rays ,a cat scan and an mri was also a colleague from way back of my husband's..He was really kind, spent lots of time showing me tbe fractures on the screen, etc, but because I got in from the back door, so to speak. The radiologist that did the sonogram( Iforgot that one,)

Sorry again, ... I suggested maybe it could be something to do with the pubis and she answered my pubis was "beautiful and nothing wrong with it"Then she asked me if I was a doctor...Probably being sacastic. Well it turned out to be broken ! All those expensive tests for nothing, they could have seen it on the first x-ray at tbe ER

Hmm - obviously her scan-reading skills need a bit of polishing...

Just stopping by to say "good night" from the USA and good morning to you on the "other side" of the pond. 

It looks like I have the green light to do the Dr Pred at night splitting with IR in the morning.  How rigid do I have to be about the ten pm ( 22:00) dosing time? Just wondering.  I tend to go to bed around 23:30. I think my cytokines dumping is between  4 & 6 am. I could feel it happening before I was on Pred. Still do some early mornings, but it is much more subtle now.

Random question coming.  For almost a year before I got sick with PMR, I was having chills down my legs at odd times. Not really pins and needles. Hard to describe, but something like the goosies I used to get at patriotic moments as a kid (please don't laugh). I realize now that since the Pred, they are practically gone. I wonder if this was some prodromal symptom of the disregulation. 

The 10pm time combined with the gastric conditions (within 3 hours of a meal or with a substantial snack of bread and protein, not just a glass of liquid) is important to create the conditions required for the 4 hour delay in opening of the coating. Taking it later will result in it not being available at the right time. The prednisone has to be released, absorbed into the blood and pass through the liver to be processed into prednisolone, the active form. That all takes time.

Others have mentioned chills, rather like cold water running down their legs. I've never had anything I'd describe as chills but I do get something like electric shocks - mostly just before a warm glow all over! When it is bad, it is a real hot flush and I sweat too. No idea what they are!

I was wondering too, if taking pred at the fine each day is important..I find that splitting the dose helps me and try to take 2/3 at around 2am and the other third at around 3pm .. Sometimes though, instead of 2am, it's 3 or 4 .Is it better to set an alarm or is there a better way to split?

Oh... And how can you tell when the cytokines are dumping?

I can feel it. At first if felt like fireworks going off in the parts of my body which would remain tender until the next day late afternoon when I felt closer to normal. (Shoulders and hips). It was strange. If I woke to go to the bathroom at 4 am I might feel fine. Then at some later time I'd have these sensations descending on me and the pains would start, and the loss of range of motion until later in  the day.  For me it seems to happen around 5 am. Now, on the IR Pred that I stake at 8 am, I still feel a very mild version of those sensations from time to time, followed by more aches and pains during the next day. That's why I want to try the DR Pred, to avoid re-inflaming at night.  It's an experiment I'm willing to try. Not so much because I'm so uncomfortable, but because I just don't think that that cycle promotes healing. 

Just a hunch. It's what I think, nothing I have certain knowledge about. And certainly nothing I can prove.

How do you choose the timing for the IR part of the dose? 8am vs 3 pm? I have only taken IR Pred to date and all in the morning, 5mg at around 2 am and the rest of the 16mg at 8am. I don't feel the need for more Pred later  in the afternoon. Not much tenderness, and only minor fatigue that passes as the afternoon turns to evening. 

So far, two+ months into this, I'm lucky in that I sleep well and don't have much fatigue yet. 

Yes - I can feel the "cytokine dump" - or something - in exactly the same way. I also noticed the being able to move earlier in the night but then being stiff when it was later. 

"How do you choose the timing for the IR part of the dose? " - judging by others it is a matter of experimenting. For most people the earlier the better probably as that then leaves the body with next to no pred in it for longer - which is perceived to be a good thing and is perhaps better for the adrenal function once you get to lower doses. I can't say - I have never mixed the two, whichever I take the effect lasts well enough for 24 hours, in fact at one time I took it on alternate days and was fine.

I honestly don't know - it all depends whether you notice the difference. If you were to take the daytime part a bit later does it then carry on working until next morning? It could do - and then the 2am dose is less significant so you could leave it until later. Moving everything that bit later might work well for you and save you waking in the middle of the night. But you would have to try and see what happens.

Hahahaha...My husband is always pushing the alternate days regimen to me...I haven't tried but that is one thing I know, I wouldn't do well on it.

I will experiment...I haven't really noticed a difference between taking it at 2 am and taking it as soon as I wake up around 8. What does make a huge difference at this point, while still in double digits at least , is splitting the dose.

So now I understand it's personal,trial and error affaire.😀

The alternate days regimen is NOT recommended for GCA. And it only works for some people in PMR - if you are more a 12-hour anti-inflammatory effect person you're struggling to get to tomorrow never mind the day after tomorrow!

If you haven't noticed much difference it could well be ther eis still some effect left over from the previous day - so shuffling the times may work nicely.

Don't worry, my husband has retired and only practices on me..Or tries to.Dnt think he'll be recommending anyone with GCA to take pred in alternate days...Just kidding, but for the first time in 45 years, I see the dangers of letting a family member be your doctor. Is it in the UK that it's illegal for a medical doctor to treat his or her partner? It makes sense...It would be really easy ti knock off the patient over a domestic dispute!!

Thanks again, will try with different times..I'm sitting at 16 mgs right now ..till I get back to Spain.

It isn't illegal in the UK - but it is regarded as possibly risky as they may nto be objective and ther eis the confidentiality issue.

There is an interesting discussion about it on the GMC UK site under Treating Family Members.