Sorry not to have posted for a while. Everything was going so well. I started at 15mg then reduced after 6 weeks to 12.5mg.Had virtually no pain about a week in, apart from when I went down with a cold. I seem to have colds about every month at the moment. I went down with another one between Christmas and New Year. I rested felt better but the sore throat and cough has lingered. I woke this morning and the hip pain is extreme. I am due to reduce, should I wait until I feel better?
BTW, I got an NHS dexa scan at the local private hospital. My bones are in the green zone with a score of 1.3, so I am well and truly above the -1.5 where the BSR recommend I take AA.
I also prioritise what I need to do, I have cleaner now and she also changes the sheets. It makes a difference! I hear Eileen's voice in my head, "Even if you are feeling so much better, do not over do it!".
Oh well done!!!! (I'm starting at the end of your post by the way!) I said to a rheumy consultant just today that the main way of dealing with the fatigue is education! Few patients are told that an integral part of their treatment is that sort of management - it does make a difference doesn't it!
Really good dexascan result too - no need for more than calcium and vit D at present, but they ARE important to boost your chances of staying at that bone density.
Never try to reduce if you are at all unwell. Wait until you are feeling much better. However, is the hip pain on both sides? Is it the same as the PMR was to start with? If it seems more like PMR then you may have to start again at 15mg and try reducing in smaller steps - as in the "dead slow and nearly stop" reduction plan.
If it is just on one side it could be either low back myofascial pain syndrome or trochanteric bursitis which are both common alongside PMR. Both are better managed with local cortisone injections.
And it is not impossible that it is the weather! It's fairly foul in the UK isn't it? I had pain in one hip last week - I'm hoping it was our rather bizarre weather and not a return of the bursitis. It's better today (the weather isn't, but I usually have pain before it changes not during the bad weather).
Hi Janet, sorry to hear you are not well. Also there is no need to apologise for not posting, we can only do what we can do. Someone will be along in a while to answer your question. I am a newbie and started to reduce yesterday from 20mg to 17.5mg.
I also have a cleaner but she hasn't started yet. So I am taking it easy. You take care and I am sure Eileen or Mrs. O will be along soon. Rest Easy.
Pat
Yes I feel strongly people should be told to plan their lives and take it easy. I have told work what I can and can't do and they can take it or leave it. Sometimes I have to curl up on the sofa for a rest, so what! Its called a reasonable adjustment and they need to get on with it...
I saw the GP to explain my Dexa result, (as he does not get sent a copy) and he tried to stop the Calcium and the Vit D! I had to explain I needed to keep going with them and just stop the AA - he really is clueless.
The hip pain is both sides, and feels like PMR. I did get caught in the cold wind yesterday. I just do not want t get to the stage of not beng able to get out of bed! How long should I wait before I go back to 15mg?
Hello Jane, sorry to hear you're not too well. Referring to the cold question, that sounded like me last year. I had a cold one after the other, or it could have been the same cold that I thought had gone then it found the strength to resurface. I put it down to the preds leaving me with a lower immunity that allowed the cold/s to linger on the way they did. And also like you whilst my cold/s were at their zenith I felt a little more pain in the hips, neck and shoulders whilst I suppose my body was attempting to control everything, then after a few days the pain receded. I like you, live with relatively little pain. But like Eileen has said, my GP warned me against any attempt to taper whilst unwell - I don't even taper if I have a cold sore and I have one of those on a monthly basis. Let's be honest our bodies have enough to cope with what with the PMR.
great news re the dexa scan, hopefully I'll have one of those soon!
all the best, christina
Oh dear... What do they get taught? It stands there in big enough print in the BSR guidelines ;-)
Yes, see absolutely where you are coming from. I'd go back now if it were me and then reduce just 1mg at a time once the pain has gone - the infections can do this and maybe your body really didn't like the change as well. The 6 weeks time scales aren't fixed in stone, the bottom line is SYMPTOMS.
Your work has a SOFA???????????????
Hi Jane, just to add that I take, calcium, vit d and magnesium for my bones and I also take 500 mgs of vit c to help with the lower immunity issue.
see what Eileen says about how long to wait before attempting any further tapering but me being me, I always leave it 2 weeks following the cold sore going away completely plus 2 weeks for good luck, but please wait for Eileen to reply, I handed out some pretty rubbish advise earlier on in the week that could have resulted in a flare up!!
good luck, christina
Hello after several weeks, and a forgotten password. Interesting exchange above. My own experience is that I have fewer colds, and almost no asthma problems- that since I've been taking pred for about 15 months. Before that quite often over decades.
This is a different ssue , but I was intrigued to see a program on the BBC yesterday deaing with a surgical treatment for epilepsy. During that operation, which involved invading the hippocampus of the brain and actually lifting out the temporal lobe, great care was taken not to touch the part of the brain just below and slightly behind the temporal lobe, because that affects vision. This epilepsy operation is now becoming a routine treatment for the seriously afflicted, no matter how delicate it is. It may be that GCA, since it is a form of vasculitis affecting the temporal lobe and which may press on the part of the brain the surgeons avoid touching during the epilepsy operation could be treated in some way by surgery too.
I have followed this forum since I became afflicted with GCA and then later on, PMR, I have seen or recollect nothing about surgery as a potential treatment or "cure" for GCA. Instead all efforts are to manage that ailment and PMR though drugs , notably pred, etc. Has anything been written about this prospect?
I always wonder about the interconnectivity, if it exists as amongst various medical specialists. In this instance "rheumies" and those surgeons who carry out the epilepsy operation. How could that be determined or established if such liaison doesn't exist?
Best wishes for 2015 and the years beyond.
I have read all posts but not posted for a while but was interested to read about your Dexa scan. My GP said my results showed osteopenia and I should take the appropriate drug to help bones which I don't want to take, don't want side effects, and she did not push.
Jan 1st I decided to try again to decrease from 4 mgs to 3mgs and not 31/2 as I had done twice before.
I do have pain in neck and back about an hour or 2 before due to take pred. at 8pm ish. Paracetamol helps if bad. Mobility also stiff but I do not have that terrible fatique so think maybe it is the pred. withdrawal creating tha pain so am determined to try and ride it out with self help.
I cannot recommend highly enough a bean heat pad (microwavable) which i wrap around neck for pain.
I also have pain in one hip and know this is not PMR and am due to go to my physio who also does Craniosacral therapy which I suggest people try as it really helps the body relax. Not cheap though which is a bore!
Its 2 years now since the onset and so pleased to have got down to 3mgs.
If I can tackle this interim pain with paracetamol, rest, heat, exercise, good diet and now stay on 3mgs for at least 6 months ,do you think I can win?!
This forum has been invaluable. Thanks everyone and Happy 2015.
DJ
Hi Charles, yes when I was diagnosed with PMR, dec 2013' although I'd had symtoms since the sep, I immediately researched the condition on the internet and was stunned to discover that the condition effected approx 1 in every 1000? So this condition is not rare by any means. I then discovered that very little research work had been done re a cure for this condition. Why? Well I can only offer this as one possible answer. Because the condition typically is found in the elderly and it is to some degree controlled with fairly cheap drugs, and it's not terminal, how much money should be spent into researching this condition?
well, I was only 53 when this condition was diagnosed, and now I am on preds I can say that I have relatively little pain. I really do feel as if I am cured although I know that I'm not. But up until I was diagnosed I went from a very sporty, well, fit female to a weeping, immobile wreck that was in so much pain that if there had been a live button and a die button in front of me, I know which one I would have pressed!
then there's the flare ups and the chance that this condition may last for considerably longer than the 2 and a bit years that we're led to believe.
of course now I'm on the drugs I can't believe that the person I described above was me. So from that point of view I really do believe that research into a cure should be a priority. I say that not least because this condition is an autoimmune condition and there are a lot of autoimmune conditions out there that are positively scary and life threatening and if they found a cure for this one who knows it very well could lead to a discovery for some or all of the others, and how great would that be? Christina
Hello DJ, wow, down to 3/4 mgs in 2 years, that's brilliant! And, yes of course I hope you win your battle. I suspect that it'll take me a little longer to get to that level but yes I eat a goodish diet and take daily gentle exercise, plus a few supplements and hope that there will be an end to this condition in sight for me too. I plan to win this battle eventually. All the best, christina
Unfortunately it is rather difficult to find a cure until you know the cause. The cause of loss of vision is not always the same. In the case of GCA it is because the giant cells that give the disorder its name squeeze the diameter of the arteries that provide the blood supply to the optic nerve. If the swelling gets too bad the lumen of the artery is squashed completely - like standing on a water hose - and the blood supply to the optic nerve is stopped. The blood supply brings both nutrients and oxygen to the nerve and without either it is damaged, sometimes beyond repair. It can survive some time without nutrients, very few tissues can survive for long without oxygen and the result is death of cells, much the same as in a stroke or heart attack, except in this case it is nerve cells. Once they are damaged beyond a particular stage they die and at present there is no way of reversing this. Maybe in time it will be possible to use stem cells and make new nerves - but that is a long way away. In the epilepsy surgery the aim is to avoid damaging the part of the brain that processes the signals from the retina that are processed as images and turned into what we "see".
Research at present IS concentrated on better ways to manage the symptoms. In the case of GCA, in fact, many doctors refer to a cure - once the giant cells have died off it is fairly unusual for it to recurr. Flares are due to the dose of pred being reduced too fast or too far - recent basic research has shown that the inflammation is still present even after 6 months of high dose pred which suggests that less haste to reduce the pred dose might, in the long run, result in less pred being required overall.
I'm not sure where the figure of 1 in 1000 came from - it is usually quoted as more like 2 in 10000 although it is the most common inflammatory rheumatic illness in over 60s - and, as you so rightly say, that is a population which has, until recently, not been an economically significant one. People are being diagnosed at younger ages - as we overcome the fixation that only the elderly suffer from PMR - and with the raising of the retirement age the impact will become greater.
The situation is far better than even 5 years ago, active research is being undertaken into causes as well as means of management. New technology and knowledge will contribute to better treatments - but it is increasingly costly and perceived as not "sexy". I suspect, however, it isn't going to be surgery that does the job.
Hi Christina and D J
Yes I think you can win the battle.
I have been having physio since July this all started. I tried ibruprofen for fortnight then the pain was so bad had to stop driving, so I started physio, then couldnot walk as the pain and stiffness was so bad, sleeping was impossible and getting out of bed the worst time of day.
Pred has been wonderful at sorting out the pain and stiffness I am literally a new women. I became so ill so quickly my sister was sure I have motor neurone disease, my mother MS and my GP Guilllane Barre, so PMR is really the best of that lot.
I think that as we have a cheap drug that does a good job quickly we should look at making sure sufferer or PMRer get physio and are signed off sick or can get some help in the home.
I am still seeing the physio and having gentle almost Bowen on my hips. I walk in feeling a bit stiff with limited movement and walk out painfree and with full range of movement. He used to treat elite sportsmen and women 4 times a day! He says I should not be paying - I have some insurance that pays part - but being able to function better is worth it for me.
All the best Jane
Do I understand you take pred at 8pm? Can I ask why? Sorry if you've said before but I can't hold the histories of the best part of 100 people in my head!!!!! Especially when on pred ;-)
Hi EileenH
I took it by mistake in the middle of the night 4 weeks after starting pred and felt so much better in the morning i decided to continue taking it pm. GP advised taking with supper and not as late as 11pm as I was doing (with yogurt) so now take with supper.
Have never dared to switch to morning although i know you have always maintained that is the best time.
DJ
I take mine at 7am with a bowl of porridge and no I do not take a PPI. I used to have to wait half an hour to before I got up, until this morning, I had got to the stage that I could bounce out of bed!
If you take pred late in the day it can stop you sleeping.
Jane
The best time to take plain white ordinary pred is at 2am! Studies were done on hospital RA patients and that turned out to be the best time for optimal control of morning stiffness. If you aren't prepared to get up at that time (and I hesitate to suggest it because of that, though I know people who do), then the next best time is as early as possible in the morning. Lots of people take it early in the morning with a sandwich or a yoghurt - if you have eaten late-ish evening I would have thought that your 11pm slot with yog was fine. Especially if you are taking omeprazole or Zantac (preferable in my opinion). Plain pred never really bothered me as long as I took it with something even without a PPI. The 11pm slot must have avoided the early evening stiffness, did it? If you don't tell the GP he won't know will he...
Sorry Jane, have I missed something, what's PPI? Christina
I have been taking my 20mg of pred between 12 noon and 1pm and reduced yesterday to 17.5 and so far so good. I get up when I waken because I can. I don't go to bed early I must add so whatever works for you.
PPI - Proton Pump Inhibitor, an example is omeprazole and it suppresses gastric acid. Zantac is an older drug that does the same, probably with fewer long term problems, and which, by the way, should always be used by patients taking methotrexate.