having really bad hip pain and due to reduce, what to do?
Posted , 11 users are following.
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!".
1 like, 56 replies
EileenH jane0118
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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).
jane0118 EileenH
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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?
EileenH jane0118
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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???????????????
pat38625 jane0118
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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
erika59785 pat38625
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Wishing you patience and well being.
Erika
pat38625 erika59785
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Yes I am glad I listened to all the suggestions and reduced by 2.5mg instead of 5mg of pred which the Consultant at Endo recommended.
I think easy does it with the reduction it seems to be working and after reading lots on this site I really do't want the yo yo effect. I hope you get sorted soon Erika. Take care.
Pat
tina-uk_cwall jane0118
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great news re the dexa scan, hopefully I'll have one of those soon!
all the best, christina
heather39822 tina-uk_cwall
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But reading the warnings against reducing when unwell, have just popped anothed 5mg taking me back to 20. Have the remnants of a flu caught in England over Christmas as well as a suspected spider bite - for which I am on mega antibiotics and will hear from my doctor today if it has to be surgjcally drained under a general anaesthetic. So...on reflection of the posts, not the ideal circumstances for reducing my pred!!
Just another example of how valuable this site is and the benefits of other sufferers' experiences.
EileenH heather39822
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And until the flu is gone, the spider bite has been drained and you are off antibiotics: DON'T REDUCE!!!!!!!
tina-uk_cwall jane0118
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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
charles01893 tina-uk_cwall
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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.
tina-uk_cwall charles01893
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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
EileenH tina-uk_cwall
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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.
D_J jane0118
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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
tina-uk_cwall D_J
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jane0118 tina-uk_cwall
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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
EileenH D_J
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D_J EileenH
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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
jane0118 D_J
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If you take pred late in the day it can stop you sleeping.
Jane
EileenH D_J
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tina-uk_cwall jane0118
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pat38625 EileenH
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EileenH tina-uk_cwall
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tina-uk_cwall EileenH
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D_J EileenH
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I do not have trouble sleeping or stomach problems taking plain pred.
If I do have indigestion I take a Gaviscon tablet. Omprezole gave me horrible side effects and as long as I can manage I refuse to take any other medication. You may be right and taking a little later may help pain and stiffness.
pat38625 tina-uk_cwall
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I have been on these for the longest time as I have bad reflux and after many tests my acid level measures 4 which is high. I am sure Eileen will correct me if I am wrong but I had to go through many tests. I even had to get a tube up my nose and into my stomach and come home with this box that measures acid level, I had to wear it I think it was 24 hours or so.
tina-uk_cwall pat38625
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pat38625 tina-uk_cwall
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Unlike yourself I don't have any pain, just the really bad reflux. I honestly don't know the side effects of omeprazole. Also taking 2 Adcal-D3 caplet and I am not sure if they should be taken with pred. It's just so confusing.
D_J pat38625
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DJ
pat38625 D_J
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Pat
tina-uk_cwall pat38625
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pat38625 tina-uk_cwall
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tina-uk_cwall pat38625
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MrsO-UK_Surrey pat38625
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MrsO-UK_Surrey tina-uk_cwall
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Manuka honey is also good for any reflux problems, as is a few squeezes of lemon juice in warm water at the start of the day or before a main meal - the acid turns to alkaline in the body.
pat38625 MrsO-UK_Surrey
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pat38625 MrsO-UK_Surrey
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jean39702 MrsO-UK_Surrey
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Right now I'm hoping to avoid the flu bug which is running quite rampid in some Canadian provinces. There are a few cases in here in the Northwest Territories and they expect a significant increase in cases in the coming months. I guess they didn't get the vaccine right for this one so my vaccine shot may not help much.
EileenH D_J
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Omeprazole IS associated with some unpleasant side effects but many doctors either don't know or deny it! And it on its own can lead to loss of bone density!
Lots of people on the forums have used plain yoghurt successfully - preferably ones with added probiotics.
EileenH tina-uk_cwall
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Ranatidine (Zantac) is an older anti-acid med that has fewer side effects than the PPIs (and should be used by anyone on methotrexate by the way).
If you are on Adcal or similar the two tablets should be taken separately as the body doesn't like being overloaded with calcium and will only absorb the amount in one tablet at a time. They should not be taken at the same time as pred so our suggestion has always been pred for breakfast, calcium for lunch and tea/dinner. You also need a small amount of fat to transport the calcium from the gut - doesn't need a lot, but that is why semi-skimmed milk is also far preferable to skimmed. You absorb very little of the calcium in skimmed milk - whatever the dieticians try to tell us about low fat stuff!
Why does the doc think Adcal should be taken in the morning? I know it makes it difficult sometimes to fit everything in but with the calcium tablets and the pred should be taken a few hours apart. And there is some evidence that reducing carbs in general and sugar in particular can cure reflux. Everyone's stomach contents are very acid, it needs to be to digest and absorb food properly and that is one of the causes of some of the side effects of omeprazole, it is so efficient. The problem is when you have reflux and stomach contents return to the oesophagus which, unlike the stomach lining, isn't designed to resist the acid. If you have no reflux it doesn't matter if the stomach contents are acid.
MrsO-UK_Surrey jean39702
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Flu is on the increase here as well with the authorities saying that the majority of those being hospitalised with respiratory infections have succumbed in spite of being vaccinated, the simple reason being that the flu virus has mutated rendering the injection useless.
Take a daily teaspoonful of Manuka honey (preferably strength UMF 15), and daily garlic (fresh if you can manage it!).....stay positive and, hopefully, well! Good luck.
tina-uk_cwall MrsO-UK_Surrey
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tina-uk_cwall EileenH
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EileenH MrsO-UK_Surrey
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MrsO-UK_Surrey EileenH
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pat38625 EileenH
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pat38625 tina-uk_cwall
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EileenH pat38625
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pat38625 EileenH
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EileenH pat38625
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pat38625 EileenH
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EileenH pat38625
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pat38625 EileenH
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EileenH pat38625
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Diana112 EileenH
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EileenH Diana112
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They definitely do NOT taste as disgusting as pred tablets you don't manage to get down in one! The worst is when you have to cut a pred tablet - taste foul and made the side of my tongue numb!!!!