Hi All. I'm a male aged 69. Had a positive biopsy result on 30th May at Q.E. Hospital Birmingham. Very good in their treatment diagnosis & follow up. Currently taking 20 mg Pred. reduced from 40 mg in two 10 increments by my GP over 2 weeks.
Big emotional mood swings on 40. Loads of energy. Lack of sleep. Mad appetite. Some paranoia & irrational thoughts. Big mental relief on 20 mg. Pred.
Steroids cured my head,ear & tooth pain which other prescribed painkillers didn't touch. I had shingles over Christmas period & felt unwell Jan/Feb/March. Sore throat, earache, headache & aching teeth developed later. My dentist was 1st call & an X ray appeared clear. A root canal molar filling previously has caused problems & is now niggling on the lower dose. I am wondering whether to have it extracted! My hospital consultant is advising a slow reduction of 2mg/month & has referred me to the Rheumatoid dept for other possible meds to assist the steroid reduction. The steroids have also pushed me from borderline to type 2 diabetes so that's another tablet to take in the morning. No room for the cornflakes soon!! Great to express it in writing & I look forward to any advice on coping with the illness & the steroid problems.
Welcome pepperdoggie to this lifesaving site. I just wanted to say hello until more people see your post so that you feel "heard". I have had Polymyalgia for 13 months and during that time the wonderful people on this site affectionally known as the "Aunties" by another gentleman who is the forum's comic, will give you any help you may need. They are unstinting in their patience and advice and have a wealth of knowledge to impart. Far more help than most doctors. From your post you seem to have a good doctor but for managing day to day problems this site is magic!
I do find that a VERY speedy reduction for GCA and the further reduction from 20mg at 2mg per month is not what I would call slow! However - what speciality is the hospital consultant if he is referring you to rheumatology?
I personally wouldn't take other drugs at present - not until you find out if you have problems reducing. Some people don't. Using so-called steroid-sparers may work or they may not. If they work and you don't develop any side effects fair enough but otherwise you may add in another layer of side effects for no real benefit.
Hi PMRpro. Thanks for your welcome & advice. It all helps on the choices I may have.
The hospital consultant was an eye specialist who has now referred me to rheumatology. My GP reduced the dose rapidly because I was having big mood swings & felt quite unstable.
I'm going to send what I send to most newbies. It's a bit long, but hopefully gives you a good idea of what GCAs all about.
Would take advice about tooth especially if you are on Alendronic Acid. Hopefully as you reduce Pred, you may find your T2 diabetes improves, but what's another tablet between friends 😉
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.
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.
Hi DorsetLady. Thanks for so much information about GCA. I've saved it & keep rereading it. I'm quite an active impatient person & it's taking a while to sink in that this condition is a long haul that I can't just blow away.
Think many on here are active and impatient (guilty m'lud) - which is maybe a contributing factor to why we succumb - along with other things.
Doesn't help much at the beginning though, 2 things you HAVE to learn is being less active and patience, not easy! But then as my mum used to say "nobody ever said life was going to be easy" - and some days it's bl***dy difficult (the end bit's mine, not hers!).
You will be pleased to learn however, than men do seem to recover from GCA/PMR and deal with Pred better that women, so don't despair!
Please keep us up to date with your progress. Take care.
Hi. Over did it again today with canal walk & gardening. Great though. Yes I ought to think my way through this better. No despair. A quiet rage maybe! Thanks.
Actually should have said 3 things you need to learn - 3rd being maybe most important - PACING yourself.
Next time do the canal walk or the gardening, not both!
It not easy to restrict what you do, but you do need to get to grips with it, and the sooner the better. But don't despair we've all been there, trouble is you feel okay, and say I'll just do 10 minutes more, or walk another 100 yards - and sometimes that just too much.
Hello Pepperdoggie and welcome, glad you found us. Personally I would want to avoid a tooth extraction at your stage of things, let's just say it's a trauma you could do without. Toothache's miserable though but yours seems related to GCA. I can relate to your Pred side effects, I expect that's why they want you on a steroid sparing drug?
Apart from tooth trouble are you relatively symptom free now?
You've endured a rapid reduction of Pred from a relatively moderate dose of Pred for GCA. We advocate DeadSlowand Nearly stop as a very gentle way to get off and stay off steroids.
Let us know how you are getting on, there are very knowledgeable fellow sufferers on here.
Hi. Thanks for your reply SheffieldJane. Quite right. My GP had to reduce the dose. I was beginning to let fly with some attitude & person opinion that normally would have not bothered with! Plus other untypical emotional experiences.
Other than the tooth niggle & a slight jaw chewy ache I am lucky to have no new symptoms so far. Might be on the cusp with 20 mg at the moment.
• in reply to
hi pepperdoggie
Remember you said you" may be on cusp."
Don't rush to get down. I have PMR and started at 15mg...went to 8mg in 6 months and had to go back up to 15mg when symptoms returned and markers went up. Wouldn't want you to have to go back up following a speedy reduction especially with GCA ..eyes are very important. Better to stay in 20s for as long as you need to rather than the 40plus that didn't suit if you end up having to increase again.
I am taking one of the so called steroid sparing agents. Believe me it's more than 1 extra pill a day and thus far (6+ weeks in) the esr and crp have come down. but.. ..Symptoms same as were on straight forward pred with addition of 2 weeks of nausea and two weeks of raging headache and numb cheek/face. Now I have tummy problems. the nature of the agent is they suppress your immune system so you have to watch for infections. A potential effect on this one, mycoPHENOLATE IS that it may cause skin cancer and heart problems. I committed my self to three months on in it and if I don't feel right I will renegotiate.
I also have diabetes type 2. have had to go into insulin...which has made me feel better. and again an Other injectable weekly drug called trulicity can cause thyroid cancer...already have hypothyroidism so that didn't help mood!
sorry to grab into your post but I would hate for someone with GCA to be so ill again.
• in reply to
Hi. Poopadoop. Your meds don't seem much fun as an alternative to steroids. Already have atrial fib. & take tablets for high blood pressure.
Had operation for colon cancer in Dec 2015 & 30 weeks 5fu chemo treatment. Think that my immune system was shot by that.
Thank you for your experiences they will help me make choices on meds. I have hospital consultant appointments coming up in two weeks at the Q.E. The plan was to reduce by 2mg at start of August but after reading your & others comments I will stick at 20mg for the time being.
I hear what SheffieldJane is saying about the tooth extraction trauma. However, when a molar root canal got chronically infected and it had got into the bone without me realising, the extraction was sweet relief. The infection was no longer allowed to sit shielded from antibiotics and causing trouble. The antibiotics were just keeping it quieter but not getting rid of it. It took seconds to do and apart from a day or two of liquids it was ok. Pred and diabetes (if not well controlled) will make you more susceptible to infection so it's a toss up between having a potential reservoir of infection risk of infection from the procedure. Might be worth having a serious discussion with a dentist.
Hi. SnazzyD. Thanks for that. Great you found the solution to your tooth pain. It's difficult to know whether it's the gca or a molar that needs taking out. Not much confidence in dentists over the years for myself. Had a lot of drill, fill & sell!
It is highly unlikely the toothache is due to GCA. Sometimes a root filled tooth can be re-root filled and in some regions the NHS will pay for you have the treatment carried out privately by a specialist endodontist. It depends on various criteria such as whether you have other missing teeth. Ask your dentist or phone your local office of NHS England. Otherwise it is probably best extracted. If you are on bisphosphonates inform your dentist, but there is very little likelihood of any complications if you are taking orally rather than by injection and the advice to dentists is that they should carry out extractions in the normal way.
Hi Tonylynn. Thanks. It's not a toothache as such. More nervy niggle now. It's a tooth I could have done without years ago. Poor clearance with the next one causes some difficulty cleaning etc. May be longer term GCA than I thought picking up on this tooth. I don't know? Certainly could do without it if no complications! Another choice for myself it seems.
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