I have been quiet but reading every post on here plus catching up on the old posts and all my questions regarding tapering, pacing, travelling ,etc., have been answered.
2 weeks ago, I had to travel from Spain, where I live, to Seattle to help take care of my 2 school age grandchildren. As pre Eileen, I traveled with airport assistance which was great, despite having a broken sacrum and pubis.I have had to drive again after 25 year which was stressful and the pain from the broken pelvis is quite bad, especially at night as can only sleep on my back which I am not used to so I haven't been getting quality rest for over two months, now.. But all in all, my PMR was under control and I had managed to reduce 1.25mgs a week successfully .I have been at 15mgs for a week now and was about to reduce another 1.25 when I woke up this morning with what seems to be full blown, untreated PMR. I don't think I over did any thing, either.
What can have happened? I know I've been tapering super fast due to the insufficiency fractures.I was planning to start the slow tapering when I got to 10mgs. The only thing I can think of to do is to stay a while at 15mgs
The pain from the fractures has not subsided at all after 2 months, in fact I am now in constant pain, not only when walking or lying on my side. Could a flare be caused by being in pain? I do take pain meds but not regularly ..I'd be a complete basket case if I took enough on a regular basis to ease this horrendous pain.
Your pain meds won't control your PMR pain anyway.I take some pretty strong opiates for my back and it does nothing for my PMR pain. PMR pain does not respond well to pain meds for some reason. The best way to get rid of the pain is to reduce the inflammation and that means prednisone.
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.
Don't reduce while doing something stressful - and that includes travelling and even holidays!
Have you got a cold or anything? But yes, the pain can make the PMR worse, it is a stress on the body and we keep saying, stress and PMR do not mix.
If the low bone density really is a major problem then even I don't have a problem with medication being used for that. It is far more realistic than trying to reduce pred faster than your body is going to allow. It is using it in a patient with perfectly normal bone density.
But really mimi - your pelvis isn't going to heal while you are on your feet doing things with children. And that could make the fractures worse - and that may be what is happening.
Just as a point to consider, prednisone withdrawal causes alot of pain, aches all over. This can take months even after stopping prednisone because your body is having to reset and adjust. I thought I was having a relapse- I had so much discomfort- when I got down to 1 mg a day- and I have now been off prednisone for almost 3 months and it gets better but I am not free of aches, sometimes sharp pain in a joint , mucsle aches etc. This is not really discussed much- and for me I was so excited to be getting off my medication that I assumed, I will feel better and was very shocked that it was not that way. I am dealing with it and I take a NSAID when it is really bad- Hope this helps.
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.
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.
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
To clarify: The finding was in patients with RA treated with either IR Pred or DR Pred. I was making the inference to PMR.
I'm not there yet, but I can predict that I will have some intense reactions to my first real flare. Diagnosed 2 months ago and still at 16.5. Trying to get zennish about GCA, not quite there. Whenever I talk with intensity for any prolonged time. Good stuff, exciting stuff, just stuff, I feel little pingings in the hairline ares above my temples.....
I can barely imagine your thoughs/feelings when you woke with that flare. And in such pain.
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" ....