Not sure if having my first real flare

I started on 20 mgs of prednisone and was about to start tapering when I broke both my sacrum and pubis . They find out was due to osteoporosis so I thought it would be easy to taper at least to 10 mgs quite quickly.

After writing this post, I decided to go back up to 16.25 (I only have access to 2.5 mg.pills) and felt better almost immediately.

I'm not sure if it was steroid withdrawal or a flare , perhaps due to the intense pain I am experiencing from the broken pelvis.

My question is whether I should try to continue tapering or wait until the accute phase of the fractures passes. Between the intense pain from the fractures and the PMR pain I was desperate as I'm alone, in charge of two children..I upped the pred and feel better but disappointed as had hoped to taper quickly in case I break something else!

You are right, I've proven to myself that nothing except the right dose of pred takes PMR pain away.

I hadn't seen your response till just now. You are right, I read somewhere that in the past, people with my type of fractures had 6 months of bed rest. Now they've changed the protocol a bit but yes, you are right about my over estimation of what I'm capaable of with PMR.

But I didn't know that one shouldn't attempt to taper while undergoing anything out of the usual. Don't know what I'd do without your input ...Or this forum! Thank you, again.

Thank you, Linda.It does help. Yesterday, I was in so much pain and discomfort that I was scared something would happen to the kids I'm watching and today, with just 1 mg. more, I feel fine.

This was my first glitch while tapering , I should have known better.

Trust me, don't thimk you missed something- I am a pharmacist, I have over 30 years experience in managing medications and therapies for patients- but the adverse effects, the side effects are not shared at onset of administration of medication, and I knew from training about withdrawal but I thought withdrawal would be if stopped taking abruptly or cold turkey- but having experienced it myself and since the internet and having more  t information being shared we are learning more. Medicine is really an art more than a science and everybody works differently, we are all individuals and that is not well documented to show how drugs will effect everyone in a slightly different way. When you read a patient information sheet you will only find the side effects that have been seen by a certain percentage of patients- just because it is not written does not mean it could not happen to you. My doctor was very conservative on the tapering process. and when I was on 60 mg and went to 50mg I had very strange pains- terrible pains in my chest, gripping. Pain in my thumb joints, and terrible muscle ache in my thighs. You will not see that written in the literature like that. I first thought I was having a heart attack. At that time, 53 yrs, woman, menopausal- all the "red flags" but it was how my body was adjusting to the decline of the prednisone.Keep up the positive attitude and don't give up, we will get through this-you are not alone in the battle.

Thank you, Linda for your advice.You are so right about the internet and how information that is shared makes things easier. I've been managing my PMR almost exclusively by using the internet , especially this forum. I had a reumatoligists who was trying to treat me completely irrationally, of the books and protocol.

Since you are a pharmacist, I want to ask you a question ...My husband who is a Neurologist keeps interfering with the management of my PMR. I told him that Spanish reumatoligists must not know much about PMR and proof of it is that the lowest denomination of prednisone pills are 2.5 which makes it difficult to reduce less than 10 ? when you get to the lower levels .I had an argument with him on the phone today .. said they have 1 MG pills in the US and UK and probably in most countries but he doesn't believe me. Are they available and if so what pharmaceutical company makes them?

Yes prednisone 1mg tablets are made by a few differenct generic manufacturers- a company called Horizon pharma just introduced RAYOS® (prednisone) delayed release tablets* 1 mg, 2 mg and 5 mg are a proprietary delayed-release formulation of low-dose prednisone that is approved for a broad range of diseases. The pharmacokinetic profile of RAYOS is different from that of immediate-release prednisone formulations with an approximately four-hour lag time. In clinical trials studying the use of RAYOS in rheumatoid arthritis (RA), patients were administered RAYOS at 10 p.m. with food. Given the delayed-release profile of RAYOS, this helps to achieve therapeutic prednisone blood levels during the middle of the night when cytokine levels start rising. When taken at night (10 p.m. in clinical trials), the delayed release of prednisone in RAYOS helped improve RA symptoms and reduce morning stiffness. While the pharmacokinetic profile of RAYOS differs from immediate-release prednisone in terms of lag time, its absorption, distribution and elimination processes are comparable.

I have not seen this prescribed but it makes sense. Prednisone is a generic drug and made by a number of manufactures- I would have to get back to you to get you names. Will let you know when I get back to the pharmacy to check. 

Yes it makes a lot of sense.  Wish I had been put on it from the beginning.  I've been taking 5mg IR Pred when I wake in the middle of the night to go to the bathroom.  

Thanks so much, Linda. This response was more than enough for me. In Spain, the public health system does provide any drug available in other countries that isn't in Spain. There is some red tape but it is doable. I don't really need the1 mg yet as I'm at 16 mgs right now but I will the future. I was trying to make a point about how behind the times they are in Spain and how they have no interest in learning the protocol for PMR maybe because it is quite rare as it is more prevalent in northern European countries. The rheumi in Spain are only interested in arthritis and doing clinical studies on it as they get paid extra for it.My last visit to the rheumi , I was told, after taking 20 mgs for 4 months to reduce to 10 for one week and then to 5.Of course I didn't follow his instructions and don't plan on seeing him again. I get criticised and laughed at by friends and family for "depending"on a forum and even the internet!! It is such a different culture, I grew up in California in the 50s and 60s while they had a dictator 😂 Maybe that's the difference and the younger generations will be better doctors, more open to change and not narcissistic.

I use it, I live in Italy and the only other option is Medrol which made me really ill with side effects and didn't work for the PMR anyway. With prednisolone which I started on in the UK and now Lodotra (Eurpoean name) I'm fine with next to no side effects. There is a lady on the forum from Germany who is also on it and has got lower than ever before using it. There are a couple of people in the UK - paying for it privately, the NHS doesn't pay. And a few in the USA.

But as hindags says - there are also quite a few people on te forums who take their pred late at night before bed or who wake during the night and take ordinary IR pred then. That works as well for the people who wake anyway and go back to sleep easily. Others wake early, take their pred and settle down for another couple of hours, by which time it is working.

We have emphasised for some years on all the forums that at higher doses no reduction should be more than 10% of the current dose to avoid the worst of withdrawal symptoms and at 50mg that is already half of what most doctors tell patients to drop with 10mg steps! It's a recommendation that originally came from experts in the USA - but US doctors are the most resistent to the concept! The dead slow and nearly stop approach we push has been adopted by many people and they have convinced their doctors. There is a clinical study ongoing in the north of England using it.

I am going to call Horizon pharma to ask more details about Rayos. I want to know how why their test of DR vs IR used lower doses of the DR as a comparison. If lower doses of DR are as effective as IR does one have to taper IR to those lower doses or just switch? I want to know if the they've tested  native cortisol levels of patients as well as the IL-6 levels as markers of healing. If the balance between cytokines and native cortisol is at the heart of this lillness, then I do believe we have to start thinking a bit differently about treatment and prognosis. I've read 

in these forums, in the wise advice about stress and pacing, etc. ButI' wondering about other implication as well.

I keep on thinking back when I had a systemic reaction to Xerox toner that I got all over my hands and didn't know enough to wash off very very thoroughly. The next morning I awoke with pink welts where've the blood had pooled overnight. An antihistamine settled it down, but for the next two years, my skin was sensitized to any little scrape, or insect bit. The inflammatory process was on alert and the welts would come back, at least in the irritated location, not systemically as far as I knew. I work with trauma patients in the mental health field. When I saw what was happening I laughed to myself that I had PTSD of the skin. 

Whatever disregulated the relationship between our HPA ( cortisol regulation) system and our immune system ( inflammatory regulation), how do we bring them back into line? I'd know better how to think about this from a straight PTSD perspective. Maybe this is all too far out. If so, please forgive the interruption. 

Anyone have any questions for me to ask Horizon Pharma if I get through and get a friendly ear?

I switched from 20mg Medrol to 15mg Lodotra from one day to the next. But it doesn't really make much difference - you switch to the same dose as your current form of pred and then continue to try to reduce. If you can manage on a lower dose - you'll be able to reduce. It is simple enough!

There is no fixed dose that manages patients' symptoms, it is an individualised titration. And I doubt that the native cortisol levels will show anything - while you are taking a dose of artificial corticosteroid that is above your physiological level then you won't secrete cortisol (your natural corticosteroid) normally as the system knows there is enough present and doesn't make more.

Re artificial corticosteroids suppressing native cortisol:  That's what I'd read.

Yet the article I tried to summarize said that the DR Pred did not suppress native cortisol, it actually seemed to increase it in patients who had never been treated with IR Prednisone.  It is mentioned at the end of the article.  This is interesting to me since I wonder how much of the slow tapering that is required is due to the lack of native cortisol during that phase of the treatment. 

As I type this, I smile to myself.  Years ago a friend of mine asked me when I was pondering my unusual presentation of GERD, "Do you want to understand it or do you want to get better?"  

For me, understanding what can be understaood and accepting what can't be known is a part of the process. 

Published online 2014 Nov 13. doi:  10.1186/ar4687 

PMCID: PMC4249493  Circadian rhythms in rheumatology - a glucocorticoid perspective

Thank you Eileen, I've given up trying to convince my husband of anything related to PMR. But when I get back to Spain and see a new, hopefully younger reumatologist who is open to learning new things, I shall show him the print outs of all your responses to my questions on here..I have really lost interest in even meeting a new rheumi but I will have to in order to get blood tests and maybe even lodotra.I will allege that since there are no I mg pills of prednisone available, I need lodotra..Will have to go to the "inspector" ....

Hello- I am 100% behind your thought process between the HPA system and our immne system. I have been on Low dose Naltrexone- and very interesting as it is shown to reset the T-cell modulation and causes a calming effect due its property of attaching to opiod receptors- helping to reduce anxiety- PTSD- I think we have to think differently about all of these "autoimmune issues"- stress reduces the ability to combat , reduces our immunity, the cortisol wreaks havoc on our body- I am on this constant search to connect the dots-

I had to use 2.5 mg pred and cut them in four pieces. They don't have to be exactly the same size as it is evened out after some days.I have been off pred for over 8 years som it worked for me

Haven't time to read it properly just now - but one thing I picked up in a quick scan was a mention of "50% of RA patients". A study some years ago showed that half of RA patients responded to a strict vegan diet with reduced joint pain - and they hypothesised there may be different mechanisms in the disease accounting for the split. I wonder if something similar is going on here. But it is a very small study I think - and it is RA not PMR - probably two really very different illnesses.

Do see where your friend was coming from! If the researchers with acccess to many patients can't work out the cause - which is what you need to know to work on a cure - there isn't too much chance of us doing it, whatever our backgrounds. But we can work out how best to come to terms with the disease for each of us. That's why we pass on what many of us have found is helpful.

Yes, I didn't know this before, my husband find that anything available in other countries that one can get perceived by a specialist, you can get through the"foreign pharmacy"...

There was once a slogan to promote tourism in Spain- "Spain is different" . When I told my husband that they know very little about PMR in Spain, probably due to the fact that it is a condition that is mostly seem in patients of Northern European decent, he kept arguing that or read not so. That's why I pointed out that proof of that is the unavailability of the I mg pills.

When I get to a low dosis, I will probably switch to lodotra when if I have to pay the full price myself as they is affordable in Spain, all meds are much cheaper there... Its always been a mystery to me.

Just read abstracts of articles talking about the relationship between PTSD and dysregulation of the HPA system.  Not surprising.

Chronic stress seems to be implicated too.

I wish we were born with meters for stress tolerance that would let us know when we try too hard or just need to slow down. As I've gotten older, I have found it harder and harder to differentiate  how much effort will help me get stronger vs will hurt me. Long before PMR I would do things and feel so good about being able to do them only to find out a day or two later that I'd managed to hurt myself.....

PMR is teaching me to pace myself.  But at a great cost.