PMRGCAuk
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Recently diagnosed with PMR, following self diagnosis, determination and persistence!

Following an op at Christmas, I experienced severe stinging in base of buttocks and hamstrings alongside pain in hips. This didn't go away so I went to see my husband's physiotherapist. Armed only with the information I had at the time she advised asking doctor for a hip X-ray, although we did not discount psychosomatic symptoms due to the trauma of losing my mum at this time as well. The hip X-ray took over five weeks to process. Meanwhile I wondered if our bed mattress was causing me problems, so spent a fortune on a new one! However symptoms were progressing faster prompting me to research the net.

I hit the jackpot when I came across symptoms for PMR in an article where a fellow sufferer also brought a new mattress and found other reasons for her symptoms. This really resonated with me. Reading on came information about GCA, which prompted me to pursue a diagnosis with a strong sense of purpose.

Returning to a different GP, new to me, I told him I thought this was what I had. He listened sending me for relevant blood tests. These came back within normal range, but fortunately doc said this didn't mean I didn't have PMR. He referred me to Rheumatology at hospital.

A week later I went back to docs in dire straits! My legs were like lead, the pain so great and wide ranging I didn't know what to do with myself. I couldn't bend my knees and had swelling around my throat.

He was in two minds. Whilst he thought it was PMR he couldn't be sure. We hadn't heard back from his referral made a month previously and bloods were not supporting diagnosis. He wrote me a standby prescription for 30mgs of prednisolone daily. However he stated he would prefer me to see a Rheumatologist before taking any meds. Given we had not heard from the hospital, my significantly increased symptoms I asked how to go about speeding up the process of diagnosis. He suggested a private hospital close to the NHS hospital he had referred me to.

As I do not have private insurance I tried to contact NHS hospital first. Fifty minutes later I was still hanging on waiting to be connected to the appointments department! I hung up and phoned the private hospital. I could have had an appointment the same day, but due to work commitments arranged for the following Saturday.

The consultant was thorough. He completed physical assessments strongly suspecting PRM. He wanted more blood tests and reduced the prescription by half! The blood tests were arranged for the Monday (the very next working day). The consultant rang me himself at 9.30am to check I understood and would be following his instructions. On Tuesday I started 15mgs of pres and by Wednesday the difference was remarkable! A miracle drug!

My consultant asked me to ring his secretary today (Friday) to let her know how I was basing this on a 90% improvement. He really stressed that I shouldn't be satisfied with anything less than 90% at this stage. In addition he is placing me on his clinic list under NHS at the local hospital who have still (six weeks on) yet to offer me an appointment for an initial consultation which is likely to be a wait of another three months.

Jumping the queue goes completely against my beliefs, but I could no longer tolerate the pain. I didn't really understand what was going on and was very close to going to A&E due to the swelling around my throat. So I console myself that, compromising my beliefs, meant that I didn't take up anytime in A&E unnecessarily.

I am under no illusion that the journey ahead may be long and hard (thanks to reading forums such as this I feel well informed) but wanted to tell my story to encourage others to save months of pain and anguish by; listening to what your body is telling you, accepting what your body is telling you, being persistent and finding a way through so that doctors and consultants listen, understand and intervene.

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If you have chest pain or signs of TIA you jump the queue whatever the diagnosis turns out to be - and potential GCA also counts as a medical emergency although GPs seem generally unaware of that. A routine referral can be anything from 3 months to 21 months depending on where in the UK you are. Your future appointments will be follow-ups - you have left a first appointment slot for someone else on that waiting list as well as not cluttering up A&E. No guilt needed.

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Thank you for your reassurance PMRpro. Best £200 I have ever spent! Now will be seeing the same consultant under the NHS. Unbelievable!

As you are a 'pro' can you tell me what I should expect in respect of treatment regimes? I.e. Monitoring visits, monitoring blood tests and frequency of these?

Thanks.

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Not a medical pro, a PMR pro!

I really can't answer your questions because it differs so much from doctor to doctor. But basically, if it is PMR it is pretty straightforward: you start on a fairly standard dose of pred for about 4 weeks and then reduce SLOWLY to find the lowest dose that manages the symptoms as well as that starting dose did.

Which is what your private doctor has done. 15mg is a common starting dose and if that works it saves reducing from a higher dose. I had a similar miracle with 15mg, from "stuck" to "mobile" in under 6 hours. There may be other bits of pain from what I call "add-ons" but the PMR should be pretty well managed by the sound of things.

Monitoring can be done by the GP - it is pretty simple as, like me, you don't have raised ESR/CRP to keep an eye on. Weight, BP, blood sugar and Hba1c and the general blood tests should be checked every few months. You will have eto monitor your reductions by symptoms - if they come back after reducing you have overshot and you go back to the last dose that worked. If you try to reduce in too big steps you may experience steroid withdrawal rheumatism - which is near enough the same as PMR. Which is a big incentive to reduce slowly with small step downs.

This is a reduction plan a lot of people have used and which is being used in a clinical study in the north of England:

healthunlocked.com/pmrgcauk...

It explains why and how. Other similar approaches are available.

Good rheumies and GPs know and acknowledge that everyone is different. Some people can reduce 2.5mg at a time, others are curled up in agony as a result. There is no way you can know who is going to be which. Nor is there any way to know who will have PMR for a couple of years and wander down the reduction with no bother and who will take 4 to 6 year - or even who, like me and a few others, will still be there in 10 years or more! Just saying - don't believe anyone who tells you will will all be gone in 2 years. Nor anyone who tells you you will be back to normal now you are on pred. Doesn't follow at all I'm afraid - I wish!

This link

patient.info/forums/discuss...

takes you to the front page of another forum. The second pinned post is our "reading list" all collected together for ease of reference (there we can't just put up links without approval). The "Bristol paper" is by a top PMR rheumy and describes a reduction that is fairly commonly used. But even that may be too fast - hence the "Dead Slow" approach.

Where are you? Maybe there is a local support group.

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Thanks again. I will check out links suggested. I do like to be in the know as it enables me to ask the right questions.

I am in Essex about 10minutes from Chelmsford and Basildon and 20 minutes from Southend and Thurrock.

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So will you be seen at Southend or Chelmsford?

pmrgca.co.uk/groups/

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Chelmsford

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Just received invoice for £170.00. So even better value than I thought! Every cloud really does have a silver lining eh?

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Hi Marilyn,

Glad to hear you have got a diagnosis and relief thanks to a switched on GP.

Some of us 'older' members, not necessarily in age or opinion, but in longevity of illness, didn't have a GP or any other medical practitioner that recognised the symptoms in the first place. Nor was there as much knowledge of GCA/PMR both on and offline as there is now.

Another common factor of GCA/PMR patients seems to be they are carers, which very often means you are so busy/concerned in looking after your loved ones' health that your own suffers, and you just assume it's what you have to put up with. It can be a very time-consuming job, and sometimes we don't have the energy to look after ourselves.

So if no-one, yourself included, has an idea of what you have it's very difficult to get a sensible diagnosis or referral to a consultant. Which is why, unfortunately, there have been, and probably still will be, late or mis-diagnosed patients.

Hope your progress continues. Please keep us informed.

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Hi DorsetLady. Was reading a post which was left hanging for three months so I asked if there was any more news. The member, Cinka, is asking for advice re GCA. Can you help?

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Where?

I've just checked Cinka's profile - all posts listed were answered with between 5 and 14 replies. One only has 2 replies - one from me and one from them but it was only asking how to find a post they had lost.

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It is member Mel-21 on Cinka post posted three months ago Advice re GCA

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Hi,

Have replied today. Not sure it's much help though, it does seem to be a nightmare for Mel-21. Plus did advise that sometimes replies to others posts do slip through net. Thanks for highlighting.

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You are so right DorsetLady!

My Mum had a fall on the evening I had my op in December so naturally I was more concerned about supporting her than taking post op care of myself. Hence for the first few months of PMR symptoms I put symptoms down to post op recovery and trauma / grief over Mum. I had even convinced myself all my symptoms were bereavement / grief related.

My Mum always told me I should look after myself more, as I am always putting others first. Whilst the latter will not change, I am heeding Mum's advice and fighting for my own corner just as passionately as I fight the corner for others. This includes hounding specialists to prioritise my husband for a transplant ten years ago.

All his tests results were showing improvement but the frequency of drainings were taking it's toll on his other organs. By asking specialist consultants and experienced patients about their journey, conditions and treatments I knew, even if the specialist consultants didn't, that my husband was on borrowed time. Again I was in their face (in a pleasant and educated way) so that they couldn't avoid listening, taking note and acting. My husband was given a second chance, thanks to his wonderful donor, and is doing really, really well making full use of this wonderful gift.

Determination, persistence, in an assured, non aggressive manner pays dividends in the outcomes this approach delivers, making it all well worth the effort.

So the message to members is value yourself as much as you do your loved ones.

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Hi again,

So pleased to hear about your husband, really great news.

Mine was ill for best part of 20 years with coronary problems, but we made the best of every day - you have too. He slowly deteriorated, but we were hoping for a resurgence when he had a new stent inserted at, but unfortunately although the cardiologist did a great job he succumbed to liver cancer which had gone unnoticed during all the "heart" rigmarole. Ironic really, but that's life I guess!

Attached may give you a bit more info and ammunition- should it be needed!

This is what I send to newcomers, hope it will help you understand your illness a little better, and enable you to control it rather than the other way round.

Apologies if I'm repeating what you already know.

It's what I've gleaned from my own illness (GCA, now in remission) and others' experiences with GCA & PMR over the last 6 plus years. I have no medical training nor expertise, except from a patient's 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.

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 in your main muscle groups - shoulders, hips, sometimes knees. In GCA it also affects the shoulders plus those blood vessels that feed your neck, head, and sometimes the torso (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, high blood pressure and hasten cataracts, 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 3 months, 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 first 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 doctors 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 daily 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 muscles 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.

Take care.

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Very sound advice. Thank you. So glad I joined this forum. The support from a like minded community is invaluable already.

Exercising pre PMR wasn't my thing! I notice some members have resumed their exercise activities such as golf, martial arts and / or serious walking. For me I am now able to resume light exercise (my norm) walking my dogs now that I can retrieve their poo!!!!! LOL.

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Now there is a criterion for improvement with pred...

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Well we all have our own goals in life!

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Indeed... ;-)

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Hi Marilyn1959

Many here will agree entirely that you certainly need 'determination and persistence' to not only get an 'official' diagnosis but to also 'live' with PMR and/or GCA. Like you I had to initially figure out what was causing my massive body aches and the 'penny dropped' after reading about the experiences of others with similar symptoms. I now wonder if it wasn't for the Net and access to quality information (which would have once been very difficult for a non-medical 'layperson' like me) - how much longer I would have had to struggle with what turned out initially to be PMR and then later morphed into (possible) GCA. Fortunately it didn't take me very long to 'convince' my GP and I had very fast 'miraculous' relief after 4 hours of Pred.

Also like you I had quite a bit of personal trauma for a couple of years prior to the appearance of my first major symptoms - the accidental death of my younger sister and some other unpleasant family issues. The stress and strain which so many people (women are as we all know especially 'good' at putting others first) have referred to as major factors influencing their general health can never be underestimated and I think deserves lots more serious research in relation to AI diseases generally. Anyway all good wishes and I hope your 'journey' goes as smoothly as it possibly can !

Best

Rimmy

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Hi Rimmy, I agree. The wait, without self diagnosing and acting on gut reaction would have been untenable!

I am so sorry to hear of your personal circumstances. It is already apparent that many of this community had a trauma before or around the time of PMR onset. I am convinced that the mind has power over the body that is sometimes out of our control unfortunately. In my case I deal with the trauma as it is happening and then go downhill a couple of months afterwards.

In my view Mental health and emotional well being is significantly under researched and significantly underfunded. If more resources were put into mental health, funding for meds could be saved. We live in a reactive society rather than a proactive one sadly. I am considering counselling to try to gain back some control.

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Welcome to this community. It's a good community but one that none of us would have chosen except for PMR/GCA. I hope your journey proceeds with steady progress.

I'm curious, did your blood markers ever go up or down?

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Thank you for your welcome Hindags.

I have only had results of two blood tests and no indicators were of particular significance, although one indicated slightly elevated calcium where I am normally slightly low - pre osteo. This was without taking any meds at all. Don't know if this means anything, as so long as docs have been satisfied I really haven't been worried about blood results so still a bit naive. Will need to take more interest now and get a bit more educated! Waiting on results of the blood test from last week ( pre pres) so will be interesting to compare C protein results as this is the only comparative data we will have related to my PMR journey.

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Marilyn

Well done for getting where you are today. I hope things go well for you from now on.

I don't know if anyone has mentioned, or perhaps you already know, but prednisolone can have an adverse effect on bone density, so ask your GP or Consultant about a DEXA scan before you've been on pred for too long, so you know what your bone density is now.

A blood vitamin D level might be useful and a prescription for a calcium and vitamin D supplement too. (My GP didn't do any of this and it wasn't until 9 months post diagnosis that I discovered I have osteoporosis!)

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Thanks Rugger. I have Dexa tests every two years as my mum had, and sister has, osteoporosis. Had last test about six months ago with pre osteo signs that had shown no deterioration over previous two years. I have also had bloods showing slightly low levels of vitamin D in the past. Was supposed to be taking over the counter calcium vitamin D supplements but didn't, yet no detrimental changes as a result, except for slightly elevated calcium levels with vitamin D levels norm. I am a bit naive about what results mean and have assumed that slightly elevated calcium levels signify improvement on previous result ? Consultant said he would probably be prescribing AA but in the meantime doc has prescribed Adcal D3 (one twice a day). Haven't started on these, as if I had followed docs previous advice would have been taking 30mgs of pred as a starting dose rather than the consultants dose of 15mgs. Reading posts, and experienced fellow suffers advice, it appears my gut instinct to hold fire on taking pred, until I had seen consultant, was spot on! So not sure whether I should start taking the Adcal or not, since I don't want to falsify any blood results consultant may wish to use as a baseline. I don't know when I will be seeing consultant next but seeing doctor in four weeks. What do you think? Any advice welcome.

You may have guessed I am hugely reluctant to take tablets at all, even paracetamol, since the side effects can cause so many other problems. Sadly severity and impact of PMR symptoms have given me no choice in the matter.

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Calcium levels in the blood are usually tightly maintained at between 2.25 and 2.5 mmol/litre but some calcium is protein bound and that is also significant. It varies with age to some extent and higher is not necessarily better, especially in older patients. If your vit D is low you are unable to absorb the calcium in your diet - so it can't get to your bones where it is needed to build bone which is an ongoing process, bone is broken down and replaced all through your life. If the breaking down is faster than the rebuilding - you can develop osteoporosis. This is especially the case if you are put onto AA, if the calcium and vit D levels aren't optimum, the AA won't work as it is intended to.

You are given calcium and vit D supplements when on pred because pred makes you lose calcium through the kidneys, having some extra seems to work to reduce bone density loss without needing to take AA. After 7 years on pred and only taking calcium and vit D I have had almost no change in bone density. In my personal opinion, definitely better than AA. Taking it won't "falsify" any blood results except possibly to improve your vit D level which is always a good thing.

Your GP wasn't really terribly far out - when he trained 30mg was probably the usual recommended starting dose. In the meantime it was reduced to 15mg and has been readjusted up again to "the lowest effective dose in the range 12.5-25mg, not above 30mg". Some people do need the 25mg.

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Thanks PMRpro. I will start taking it.

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