PMR with night flushes. Histamine?

Posted , 15 users are following.

I've been managing with PMR for about 9 months without steroids. Have stiffness and pain mainly in the shoulders, neck, upper arms, pelvic region, thighs, and knees, especially between 9 am and 3 pm. The symptoms ease in the evening and overnight, but I am experiencing hot prickly skin in the torso and head starting around 10 pm, which I think is a histamine reaction related to PMR. The problem is that it is causing insomnia. Has anyone else experienced these symptoms and can they suggest a solution?

0 likes, 79 replies

Report

79 Replies

Next
  • Posted

    How do you know you have PMR? I could never sleep if I didn't take Prednisone, to much pain.

    Report Reply
    • Posted

      Hi Mr Bella. Classic symptoms and progression of the sudden onset type, and elimination of other possibilities that mimic PMR with blood testing. In my case the pain eases off during the night. What is preventing me from sleeping is the histamine flush. Histamine suppresses drowsiness, so I am wide awake half the night. I make up for it by sleeping in and napping in the afternoon. Fortunately, I'm retired.

      Report Reply
  • Posted

    May I ask why "I've been managing with PMR for about 9 months without steroids" ?

    Report Reply
    • Posted

      And allowing unmanaged inflammation to course through your body is opening you up to increased risks of those and other illnesses such as periphereral vascular disease as well as the possibility of GCA developing - far more likely with unmanaged PMR than when you take pred. GCA puts your sight at risk and also increases the risk of serious arterial damage including aortic aneurysm.

      It isn't a simple equation I fear and I am appalled that a GP did not explain both sides to you.

      Report Reply
    • Posted

      PS, forgot to say that most so-called side effects of pred can be avoided or managed when you know how and it has also been established that at the lower doses used for PMR they are no more common than amongst an age-matched population not on pred.

      Report Reply
    • Posted

      Eileen--may I jump in here? I'm wondering what a "lower dose" is, since I'm also concerned about side effects of pred. thank you!

      Report Reply
    • Posted

      PMR doesn't reduce life expectancy. However, there is significant morbidity associated with steroid use, which is why many physicians advise caution in their use, at any dose. The problem that some PMR patients have is that they can taper down to about 10 mg/d, but no further. At that point they have to consider the effects of life-long use, which include diabetes, osteoporosis (especially women), heart disease and infections.

      There is a good paper on PMR progression here.

      The good news is that many patients who have PMR without symptoms of arteritis can be treated successfully with RA drugs like hydroxy-chloroquine, which is generally well tolerated and has few side-effects except for retinitis, which can be monitored for. Unfortunately I don't fall into that group, but perhaps others in this group will.

      Report Reply
    • Posted

      Hi Rhea. From what I have read, low dose would be 20 mg/d and less, and high dose would be based on body mass, i.e. about 1 mg/d per kilogram of body mass.

      I've mentioned some of the side effects of steroids in my other replies, but the one that women really need to watch for is osteoporosis, which is difficult to treat.

      Report Reply
    • Posted

      I stand to be corrected but I've always thought 5 mg was the low dose, although you do still have to be careful with diet and exercise - as one should be as we are aging and wearing out anyway. My understanding is that pred can affect the bones as low as 2 mg, but I was able to improve my bone density during a year when I was above 5 mg for most of the time, simply through exercise, diet and supplements. Diet also controlled my elevated blood sugar, and I have not put on any weight.

      We can't start at 5 mg, but with a careful taper and looking after oneself through rest, exercise, good food and avoiding stress, etc., it is possible to get quite close to that level, or at least to around 10 within a year. Of course we are all different and some people need more because they don't metabolise it as efficiently as some others do. People with poor adrenal function, whatever the cause, will have to have prednisone or an equivalent steroid indefinitely and I think their dose is usually around 5 mg.

      Report Reply
    • Posted

      Low dose is up to 10-15mg, 15-20 is described as moderate and 20mg and over high. Obviously 5mg is low - but really it is a bit relative - there are a lot of factors involved.

      Treatment for PMR typically starts at 15-20mg to achieve a speedy improvement in symptoms and then the dose is tapered slowly in a process called titration to establish the lowest dose that achieves the same relief as the starting dose did. Most people are able to get to 10mg within several months, depending on the activity of the underlying disease and other factors such as body mass (small slim women manage with lower doses than larger patients, male or female), bioavailability ( the amount of the oral dose that you absorb in the stomach which can vary from about 50% to 90%), disease activity which varies from person to person and also over time (it tends to be higher in the first 18 months but even in that time it varies, it seems to cycle and it is possible to reduce on a downward trend only to find you have overshot what you need on an upward trend. People who have to continue working tend to need more than those who can rest and pace particularly effectively.

      This

      http://www.rcpe.ac.uk/sites/default/files/quick.pdf

      outlines a tried and tested approach to the diagnosis and management of PMR with advice for GCA management. We know this works pretty well although some patients need a bit more to start and may be a bit fast for some patients - but I think the primary factor in the reduction of flares from 3 in 5 to 1 in 5 is the time spent at 10mg, a low dose. It takes the patients though most of the first 18 months when flares are most common at a dose that will manage most such flares and prevent them happening. If you rush below that you risk a flare and having to go back to a higher dose to manage the symptoms. Which negates the perceived advantage of speedier tapering to a lower dose since you have to go back to the start and often even then may struggle to get the symptoms under control. No-one knows why but getting into a yoyo pattern with dose is the worst thing that can happen - often patients need an increasingly higher dose to sort things out.

      As I say, most side effects of pred can be managed when you know what to look for and how. This work

      https://www.medpagetoday.org/rheumatology/generalrheumatology/66912?vpass=1

      has found not only does PMR need management with pred for far longer than is commonly quoted but that once you achieve the lower doses the so-called side effects of pred would probably be found in a similar age-matched population not on pred.

      Many patients (male and female) already have low bone density BEFORE pred is introduced and that CAN be dealt medically with if severe enough. If it is early then exercise and supplements can be used to improve it - yes, even with PMR, ask Anhaga who improved her t-score from -2.1 to -1.6 in a year just doing that.

      Inactivity is a major risk factor for osteoporosis, so don't think not taking pred will prevent that. I had PMR for 5 years with no pred. When it comes to managing life with PMR and no pred I know what I'm talking about - it is hell. It leads to inactivity, weight gain, depression, isolation, falls because of poor mobility, balance and spatial awareness. Never mind pred causing all the side effects - PMR alone can do it all, believe me.

      And as for PMR resolving on its own in a few years - please come back and tell me when it happens for you. Pred only manages the condition, it doesn't alter the disease itself so I think it is fair to say that patients getting off pred is generally an indication of how long PMR would last with or without pred. I can tell you now that after more than 10 years involved with 3 different UK PMRGCA forums with members all over the world, the times for remission quoted in the last link I gave you are pretty much right. About a third or probably less get off pred in a couple of years. A bulk need 3 to 5 years and a few of us are around a lot longer. Don't tell me that the forums are only people who have it badly - no-one knows which group they belong to when they arrive here and most people do tell us when they get to low doses or off pred altogether. They also make friends on the forums, in some cases real F2F friendships in the UK since we have a lot of support groups too, and hang around to make other people's journeys with PMR and GCA easier by providing support and advice.

      Report Reply
    • Posted

      You don't have much to tell me about PMR - I've had it long enough and read most things as well as working with a research group.

      But if you believe this

      "The good news is that many patients who have PMR without symptoms of arteritis can be treated successfully with RA drugs like hydroxy-chloroquine,"

      I fear you are in cloud cuckoo land. Hydroxychloroquine has little or no place in PMR - according to the world experts in the field on the basis of peer-reviewed evidence. See the 2015 REcommendations. I know no-one for whom it has worked even as a steroid sparer - and definitely not on its own. Unless they had been misdiagnosed in the first place. That is another matter of course.

      Report Reply
    • Posted

      Eileenh, you are still my Angel, got me moving, explained tapering and dosages. You are a world of information. Thank you

      Report Reply
    • Posted

      Ah - light dawns. Is this the Brawer study to be found on Dove Press?

      Oh yes - it has been discussed with top experts in the field who have assessed it as not only a very unreliable study but also published on a somewhat dubious platform which has received criticism for its publishing practices.

      I - and the rest of the charity representative - take my guidance from groups whose work has been subjected to peer review in reputable journals and which has been confirmed by other leaders in the field.

      I know of quite a few patients whose doctors have obviously believed those claims and have put their patients onto hydroxychloroquine - not one of them has come and told us they have gone into remission. Most have had to stop because of no change in symptoms or adverse affects.

      His claims don't fit with the evidence of years of imaging and management of patients with PMR/GCA. And to have patients with TAB-confirmed GCA and not use high dose CS immediately is tantamount to negligence - had they lost their sight there would have been no way back.

      You can think of me what you like - but I am leaving this here. No more comment.

      Report Reply
    • Posted

      I was looking at a couple of comments by Dr Brawer's patients:

      He is off in the 18th century! Colon irrigation? Does he also do bleeding?

      Doesn’t believe in generics. Doesn’t take blood tests. Antiquated office.

      Report Reply

Join this discussion or start a new one?

New discussion Reply

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up