New sufferer!

New sufferer!

Hello - I'm new to this site. I was diagnosed with PMR last August after five months of going back and forth to a GP at my surgery who obviously didn't know much about this illness as I had been telling her all the symptoms that I was suffering from but she didn't pick up on any of them. I eventually asked her if I could have my bloods taken and it was then they discovered I had PMR.

My own registered GP put me on 15mgs of Pred a day right away (thank goodness as I was in agony by then) and referred me to a Consultant at the Norwich & Norfolk Hospital who I saw some two/three weeks later and who said the 15 was too high and dropped me to 12 mgs daily. I had of course felt that a miracle had happened when I was first put on the Pred and continued with the Consultants cutting down regime (which she printed out) and was under the impression that in a year's time I'd be off the meds and be better! Of course not a bit of it as when I dropped from 8 to 6 at one point I had a relapse and phoned her Secretary who called me back later that day and said it's ok to go back up to 7mgs which did help. I continued with the cutting down schedule but in March when I got to 3mgs it has come back again. I called the Secretary again and was told I had in fact been discharged and would have to return to my GP to get referred again to see the Consultant. I was of course really upset at this news as I had not been informed of being discharged. However after another long week of pain I saw my GP two weeks ago who advised to go back up to 10mgs daily for five days and "then cut down again"! That's it - no come back for another blood test in a few months or come and see me again in a couple of months - no follow up at all other than "call me of you want to discuss anything".

So I thankfully found this site and today met up with a self help group in Norwich - MaryJane I believe you are one of the ladies I met today? I have also read the very good book by Dr Jane Gilbert which has given me more info on PMR. I initially thought it was an arthritis on the back I was suffering from but I know better now and I'm so glad I went along today to meet the other ladies who suffer from this horrible illness.

I'm going to try the "dead slow" method of cutting down as I think my regime was far too quick. I'm wondering if anyone else on here has tried the more slower method?

Linda

13 Replies

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  • Greetings and welcome Linda :-)

    If it's any consolation, your story is quite typical - both from a symptoms point of view and your GP's rather casual response.

    Just to say: you're in great and expert / trusted company here, with a wealth of experience and expertise at your fingertips. No doubt you'll get an avalanche of responses and advice / support very soon (esp re. steroid tapering / the DSNS method). Just watch and wait.... and also try to do some searching on the 'Topics' menu on the RHS of the forum main page if you have the time and patience. You'll find lots of answers there...

    As for me? Not an expert, I just try to do my humble bit to contribute on The Lighter Side... ;-)

    Good luck on the Journey

    MB :-)

  • A variation on a common story :-) To my mind and my part of thr country, doctors and rheumatologist get us off their radar as soon as possible. Someone will pic up on this to give more help. The forum has been a god send for me. I am sure you will get a lot of good advice.

  • Yep Pete, totally agree :-)

  • :-)

  • There are a lot of people on the three forums who have used either the "Dead slow" or a similar approach to reduction - and most of them say it has worked well for them and they haven't had any flares until they got to the lowest dose that manages the symptoms which is what you are looking for. The feedback from the Leeds clinical study which is using it is also good - patients are saying it was the best reduction plan they've had. A very similar plan was used in a NE hospital and the rheumy there was amazed how few problems arose.

    The lord only knows where your doctor got the idea that 15mg was too much to start with - it certainly wasn't from the medical literature! The most recent international recommendations say "the lowest effective dose in the range 12.5-25mg, never above 30mg and never below 7.5mg". 15mg was just FINE - providing it was enough for YOU!

    Never mind - you obviously now have a GP who is happy to let you get on with things and provide the prescriptions. That is by far the most important thing.

  • Well said PMRpro :-)

  • Hi Linda,

    Following may help explain a little, it covers both GCA and PMR, but once diagnosed the treatments are very similar, just different starting doses.

    This is what I send to newcomers, hope it will help.

    It's what I've gleaned from my own (GCA) and others experiences with GCA & PMR over the last 6 years. I have no medical training or expertise, except from a patients point of view.

    There's a lot of information to digest, so you may need to read it through a couple of times, save it, print it, whatever, and take your time to read other sites etc. Too much to take in all at once.

    Apologies if I'm repeating what you already know.

    PMR or GCA are not like most illnesses -take a course of tablets for a few weeks or months and they're cured. There is no cure as such, but the inflammation caused by the underlying illness can be controlled.

    Lots of us are never sure what caused the underlying conditions of GCA and/or PMR (physical or mental stress are favourites though) but having them means that your immune system is not working correctly and allows certain cells within your blood vessels to grow too much - hence the Giant Cell in GCA. That causes inflammation in your blood vessel walls and means that the blood, energy and oxygen does not circulate around your body as well as it should, so you get aches, pains, stiffness, weakened muscles and fatigue.

    In PMR the most widely affected blood vessels are those to your main muscle groups - shoulders, hips, knees. In GCA it usually affects the shoulders plus those blood vessels that feed your neck, head, and sometimes the Aorta. If only affecting your head it's sometimes referred to as Temporal Arteritis (TA).Serious sight problems can arise if the ophthalmic artery is affected and stops blood getting to the optic nerve, if that's damaged then partial, or all sight can be lost. If your Aorta is affected it can lead to strokes, aneurysm etc.

    The only drug that controls that inflammation is Prednisolone (Corticosteroids), as I said it does not cure the underlying problem of GCA/PMR, but it keeps the resultant inflammation under control. Pred comes in varying dosages, and can be either uncoated (which can be cut if necessary) or coated/enteric (which cannot). Unfortunately it does have some rather nasty side effects - sleeplessness, weight gain, depression, it can also increase the possibility of diabetes or high blood pressure, but not everybody gets all the side effects, and they can all be managed.

    Usually PMR and GCA go into remission, but that can take a number of years, around 4 seems to be the average, sometimes less, occasionally a lot longer. You have to tell yourself this is a long term illness, and accept that - it does you little good to say at the beginning I'm going to be off Pred in 3months, 6 months or even a year. That just puts you under pressure, and that's something you don't need!

    The initial high dose (PMR: 15-20mg, GCA: 40-80mg) takes control of the inflamed cells, and then you have to taper slowly enough to keep the inflammation under control, if you do it too quickly you may go below the level of Pred that works for you. It's a balancing act, you obviously don't want to take too much Pred, but you need to ensure you are taking enough.

    When you collect your fist prescription you should also get a Blue Steroid Card from the pharmacy. Once you've been on Pred for 3 weeks your own adrenal glands stop working, so you mustn't suddenly stop the steroids - anybody in the medical profession should be aware of this. Some people wear a medical ID bracelet just in case of emergencies. Look on line, or surgery may have leaflet.

    The usual plan is to reduce every month but, and it's a big but, what looks achievable on paper, in real life it's very often not!

    As I said most people have started at a bigger dose, and therefore the inflammation at that level is well under control, the art then is to reduce SLOWLY provided you have NO return of symptoms. Some doctors don't seem to get the 'slowly' bit! If you reduce too quickly, whether that time-wise or by dose you are likely to go past the level of Pred that can control your inflammation.

    If you remember the mantra-do not reduce more than 10% of your existing dose - it will stand you in good stead. So at 50mg that would be 5mg, at 20mg -2mg or 2.5mg (tablet size). Obviously once you get below 10mg, that will be part of a 1mg tablet, so most people find that cutting them in half (so long as they are uncoated) gives approx 0.5mg.

    Some people have problems reducing from existing dose to a lower one, and that's because your body needs to acclimatise to the new lower dose. So for a few days you may suffer steroid withdrawal (feel generally unwell, irritable etc) but it should go after about 3 or 4 days. One way of stopping any withdrawal symptoms is to taper over a few weeks, rather than an "overnight" drop. Say introducing the lower dose on 2 days during first week (although not consecutive days), maybe 3 days next week, 5 days next week, and then 7 days final week. There are many different plans, quite a few published, or devise your own - whatever suits YOU best. Just ask!

    Recommended time to take Pred is early morning, with or after food. However the cytokines that trigger the inflammation are produced around 4am; some people take their Pred around 2am so that by the time it is fully in their system (uncoated

    about an hour or two; coated about 3-4 hours) it's ready to fight the inflammation.

    Try and read as much as you can about your illness, the uk charity PMRGCAuk.co.uk has lots of information. You can find a link if you go to the home page of this site and scroll down, it's on the right hand side.

    There is a book by Kate Gilbert - A survivors guide to GCA and PMR on Amazon - either hard or e copy, just type in GCA or PMR in Books. The North East branch of PMRGCA also has lots of info, link from main charity webpage. You can also get information on the treatment suggested from British Society of Rheumatology (BSR) site, or patient.uk site has information leaflets aimed at patients and doctors. A little while spent searching the internet will give you plenty of reading.

    Look up 'Spoons Theory on web, (Butyoudontlooksick.com) it's not about PMR or GCA but another auto immune disease, and it will give you an insight into how to adjust your lifestyle.

    You do have to do your bit as well though, just because you feel better when you start the Pred, you are not back to normal, you still have the underlying disease there. You have to learn to pace yourself, that means resting. Your muscles are not as resilient as before (both from GCA/PMR and the Pred) so when you exercise - do gentle - Pilates, yoga, Tai Chi all good - no strenuous workouts or marathons! You need to let your muscle recover, and that now takes longer.

    Take more time planning, don't try and do half a dozen jobs all at once, or all on one day! Take any offers of help, even though it may go against the grain at first. Life can return to NEARLY normal, just in a slight slower lane maybe.

    As I said at the beginning a lot of information to take in, but hopefully you can come back to it as and when you need to.

    Please come along with any more questions, or just to talk. There's a lot to learn, but there's lots of people on here willing to help - mainly from UK, but also many from around the world, so you should get a response anytime.

    Take care.

  • Thank you so much for such a comprehensive reply to me! I've read it all with interest - thanks again!

  • Whatca fabulous summary! This should go to every GP and rheumatologist in the country!

    Thank you, Dorset Lady!

  • Hello Linda. Yesterday, I met you, at my first group meeting in Norwich.It was an interesting time hearing how fellow-sufferers are managing. With regards to the DSNS...DEAD SLOW NEARLY STOP METHOD, I MOST CERTAINLY WOULD RECOMMEND IT! Just wish I had known about Kate Gilbert's book, and this forum sooner. Have recently reduced from 3mg Pred to 2mg, using this method, with no hiccups along the way. After my Synacthen Test, Monday, and depending on the outcome, I will start reducing to 1mg. YOU ARE IN THE RIGHT PLACE ON THIS FORUM!!

  • Thanks for this! It was great meeting you all at the group - really feel now I'm not all on my own!

  • Hello Linda, and welcome! Your story sounds all too familiar - if the true effects of too quick a reduction were generally known and felt by the medics I suspect they wouldn't be so gung-ho! I was diagnosed purely on symptoms in September 2016, after suffering some 7 months. Blood tests were done, but my inflammation markers were very little raised so no definitive answer there. I was immediately put on 15mg, and no referral to a rheumatologist as the speedy relief from the pred really confirmed the pmr diagnosis.

    My gp sings from the same hymnbook: suggested I'd be on medication about a year, and should be down to 10mg within 6 weeks. If only... over a 8 months on, and I'm currently on 12mg. The biggest yo-yo was when I followed her plan in the early days to drop by 2.5mg each fortnight, and I ended up having to go right back to 15mg and start all over again. Since then, I've taken it very slowly but even so slightly overshot the right amount (which I think is about 11-11.5mg at this stage), hence I'm back at 12mg for a little while. What I would say is that I doubt a rheumy could do anything more for me so I'm sticking with my gp - as long as we don't part company on the right way to reduce. I really think that if you have a gp who is happy to go along with sensible plans for slow and gradual tapering you will be more than well served when you add in the wealth of advice and support available from this forum. The only other thing I'd add is that you might need to be active in making sure you get adequate checks along the way - generally it's been me who has suggested when blood tests should be taken, and I had to ask for a bone density scan in the early days (mainly because I wanted ammunition to argue against taking the suggested alendronic acid). Any questions, doubts or concerns you may have will I am sure be well answered by our fantastically knowledgeable regulars here.

    Good luck on your journey.

  • I too was diagnosed last year in June after many months of going back and forth to doctors who did not have a clue and prescribed me so many medications and not one worked. I live in the USA and ended up in the emergency room as I could not move and they took a pint of blood and ran tests and diagnosed me with PMR. 20 mgs of prednisone put me out of pain for the first time in months I was so happy that what was wrong with me actually had a name. I told the doctor that if I could actually move I would hug him...I now see a rheumatologist and am down to 8 mgs. I don't seem to be able to get to 7 I was taking 7 one day and 8 the next but day where I take 7 am in pain. Still very stiff in the morning but few hours later I am doing a lot better. My doctor suggested taking 5 mgs in the morning and 2 or 3 at night. For me this seems to be better am not as stiff. Have good and bad days but am hoping that it doesn't last forever. I head it can go as fast as it came so am keeping my fingers crossed. I love this site as have learnt quite a few things. I do think you have to come down very slowly from the prednisone. Good luck

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