Hi. I am a new member and this is my first post. Diagnosed with PMR in March 2023, started on 15mg of pred on 31st March. It worked like a dream and within 48 hrs, my pain was down 70% and my energy was up 70%. I felt fantastic and within a month started slowly to increase my level of exercise and activity, so that by June I was swimming & doing pilates/yoga as normal, both I previously had to give up due to pain. I followed GP advice on tapering. After 4wks down to 12.5mg, then 4weeks to 11mg then decrease every 4 weeks by 1mg.
At 9mg, I was diagnosed with glaucoma and started on eyedrops, which having been borderline for a while seemed almost a foregone conclusion with steroids.
But my niggles really started about 2 weeks ago, when I got to 8mg, which is when I discovered PMRGCAuk and this wonderful forum with great info and advice, but of course we are all individuals and have different reactions to steroids .
I have had 2 migraine/visual disturbances in last 3 weeks. I have felt energy levels drop and fatigue can occur at the drop of a hat even when I have done little. Thought my blood sugar might be dipping and spiking, but I am not diabetic. Ended up with emergency GP appointment last Mon, had a range of blood tests on Tues including HbA1c and instant blood sugar and all is OK. Inflamation markers OK. BP and pulse all good.
Today, I am feeling stiff in my body. Having come so far all this is a blow. Can't get a regular appointment with GP until 20th September.
From what I have read, I may have tapered too quickly, but would appreciate advice.
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EnyaBlue
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sounds like overly optimistic with tapering and getting life back to normal - have a look at this - and as your appointment is another 3weeks ago you may need to go back to 9 or 10mg as 8 mg is obviously just a bit too low-
Thanks very much. I have read a lot of your posts and replies on here and saved some. They are all excellent. But there is so much to take on board and as my head is a little fuzzy too, then I need to take my time re-read and digest all this new information that is coming my way. I am learning fast now I have found this forum and also just bought Kate Gilbert book. But like others have said, when first diagnosed you get the impression that it will be all over in a year and that is clearly not the case.
I does take time to get your head around it, and the doctors [nor much of the advice on google, apart from here of course😊] give a realistic view of how long it may last, or what difficulties you may endure.
We tell you, warts and all, whether you want to hear it or not... but gently and with the best of intentions,, Stick with us, we'll get you through it...
.. and if you re-read the information in a few months, or even years it will make a lot more sense... and you'll realise how much you have progressed.
You are right about Dr Google, same tepid info which has probably gone through a risk assessment process and repeated on each website. I can understand why to some extent, but as a former Maths teacher, I understand that population statistics give you one view, but it is individual stats which matter to the individual and none of us is an average.
PMRGCAuk is terrific and I am going to tell my GP. You and others are doing a great job answering questions and it is much appreciated. So impressed and thankful. Thank you once again. 👍
I think that you are right in your assessment that you have tapered too fast . PMR is a serious systemic illness that must be treated with respect. Pred only deals with the inflammation, pain and stiffness, it has no impact on the disease process. On average PMR lasts for 5.9 years. The aim of tapering is to gradually get to the lowest possible dose that gives relief from symptoms as the disease chugs on. It also means that you have to curtail and pace your activities, even if you have achieved “feeling quite reasonable”. I would return to the dose you last felt comfortable at and rest there for a while. If you go too fast you can miss your ideal dose for the state of your disease.
I am concerned about your recent symptoms and would strongly advocate a thorough eye examination from a very well equipped optician or better, have a referral to an Opthalmologist. PMR is strongly related to Giant Cell Arteritis and any eye issues must be seen as a red flag, as sudden sight loss can be the outcome. So if this has not been dealt with, please initiate it yourself.
I recommend having a good look at FAQs on here to understand more about your illness. Best wishes Jane x
Thanks for your reply. I have check up with eye consultant in October, but will try to get it brought forward, but I have just seen a post on here that gives a link to a website with details of Opthalmologists in the UK who will see emergency eye cases and there is one not far from where I live
Hello EnyaBlue!Welcome to this wonderful supportive forum 🤗
I too was diagnosed in March and started pred 31st March 🙂
I've a different experience to you with tapering.
I'm v sorry to hear after such great progress you have had setbacks. From what I can see this is often the way of pmr. How are your eyes now? There's an illness called giant cell arteritis that we all need to be mindful of and do go toA and E if you get the symptoms.
I'm sure there will be others to advise you so much better than me.
You have done the right thing in joining this forum.
Thanks for your welcome. This forum is fantastic. I have read about GCA and am mindful of it. Reading Kate Gilbert's book, I have looked at the 5 main criteria for GCA and would say atm I only tick 1 possibly 2 of them, but I am definitely aware of the links with PMR.
Thanks. On Monday I was just passing GP surgery and called in to ask for advice as I was concerned. The receptionist did the right thing. I was seen first by a paramedic then by the duty GP as an emergency. He did all the right things and I got bloods done on Tuesday which all seem 'Normal'. But I am aware of the dangers of blurred vision, headaches etc due to health conditions that my husband has suffered from in the past including migraines.
I don't feel that fast tapering necessarily stores up trouble - if you are doing OK, then it it isn't a problem. What IS a problem is that it is too easy to overshoot even when you stay at a new dose for 4 weeks. I don't think you have been too fast - but you HAVE overshot the dose you need. To some extent it is inevitable because the process is called titration of the dose and you do it by overshooting so symptoms start to appear and immediately go back and redo that bit more slowly - just like in the chemistry lab at school if you did science - and that is how you get the accurate result.
I would go back to 10mg for a week or so and if you feel OK, try 9mg and then stay there. And don't let anyone tell you you should tough it out!!!!
Many thanks for your answers. Yes, I did do sciences for A'level so understand the concept of titration. In fact very few things work in a linear fashion and it seems that steroids are no exception. And none of us have the same physiology/biochemistry/weight/thresholds etc etc so what you have suggested makes sense and ties in with other replies. I will up the dose. Not sure whether I should go straight back to 10mg or try 9mg first 🤔Will have a think
PMR is very cunning, it lulls you into a false sense of security, so you get over enthusiastic and then pow it strikes! I think most of us fall for it. If you are new to the biard you may be interested in our gardening group for PMR and GCA sufferers. facebook.com/groups/6288051...
Thanks piglette. Yes, I was saying to a friend that I had been lulled into a false sense of security. I'm a big fan of gardening and also share an allotment. In June I was so pleased that I could dig again. But this PMR is a pesky beast and today it was enough to walk 10mins to the allotment, pick the produce and walk home again. But with everything I'm learning on here, I will just have to be patient and take things a bit at a time atm. Now having a lie down 🙂
I mirror your symptoms. Was on 15Mg in April and currently trying to hold at 4.5. Muscle aches ease by midday but lethargy and fatigue are constant. Am keen to come off steroids as my eyesight is falling. Like you my blood tests are clean. Stuck between a rock and a hard place.
Coming off pred doesn’t improve eyesight. However it may slow or stop the progression. I switched to HCL because I developed Macular Degeneration after eight months on Prednisone. My macular degeneration stopped its progression (even improved a bit) after the completion of the switch to HCL. Of course, a shot in my eye every eight weeks might be the reason it stopped progressing as well.
I think that shot may have a LOT to do with it! But it also depends on the reason for the poorer vision and some people blame pred for everything, If it is cataracts, they won't go away because you stop pred nor will they improve.
I think the shot definitely stopped, or at least slowed down the Macular Degeneration. At least the scans show that it has. And we will never know if the eight month of pred was a contributing factor to the MacD. I haven’t developed cataracts at this point.
Your experience sounds very similar to mine. We are the same age and I was a regular exerciser too. Initially all nearly back to 'normal' on Pred (15mg to start with) until I got to around 9/8mg then found I had to cut back on the exercise some more and rest more! If I feel tired now I have a lie down in the afternoon. Despite what the rheumatologist said, I have to taper much more slowly...1mg a month is too fast for me. Have had a couple of flares (one while travelling and probably overdoing things) and took an extra 5mg for a week or so, which works well despite being a bit frustrating.
Having started Pred in September last year I'm now on a 7 week taper from 6.5 to 6. So far so good but the lower I go the slower I seem to have to go. Have more feelings of fatigue but on many days I feel good too!
Wishing you well - you sound as if you're being sensible anyway!
Not sure the glaucoma is a foregone conclusion with steroids. I was diagnosed in R eye couple of years before GCA and two and a half years later, so far, touching wood, it has remained stable. Suggest you look into lazer before you get too long into the drops - some places do it on NHS now cause it's NICE approved, (with a wait, I guess) but also available privately. If it works you can live your life as normal with checkups.
I was diagnosed with glaucoma not long after PMR diagnosis and put on drops. At my next visit to the eye clinic I saw the top man who stopped the drops saying it was not glaucoma but that I had thick cornea
Hi enyablue. Like you I was diagnosed in March 2023. I am currently on 11 1/4 mg of pred and pain free. With exercising I am back in the gym, but only twice or three times a week and pushing half the weight in weights I used to. I am keeping a record and I am 7 weeks in and ok. I think the only way with PMR is to work way back slowly with exercise and pred, your body will tell you unfortunately with this condition if it to much, can’t instantly go back to how you used live 😩
Hi yes I do think you have tapered too quickly.I chosee to taper very very slowly when I got to 10 I have only tapered by .5 every 6 weeks so allowing my body to adjust with only one issue .I am now at1.5 but now having a few issues stiffness etc.I will be asking for a blood test before I taper any more.Anyway my suggestion is always to taper slowly.Like you I started on 15 .Good luck
Hi EnyaBlue - and welcome! Several of us seem to be in a similar position to your good self, so tis interesting. I was diagnosed in late March '22 and, because 15mg had no effect, was put on 25mg for a month, then 20 similarly, through to 15mg and, bump, down to 10mg. That's how my medical centre advised me to taper.
Since then I've twice been down to 8mg but am now at 11.5mg. I tapered extremely slowly from 10mg, as per advice from this forum, but no good. I have now developed, what appears to be carpal tunnel syndrome (CTS) in both hands, which leaves me in pain in both arms on waking (in fact I dread going to bed now). Am now having various tests for CTS - the pain in my arms feels like nerve pain not PMR.
I do sympathise with your feelings but you've done well thus far and am sure the advice given above will help you. Look forward to hearing how you're getting on and wish you the very best of luck on your PMR journey🥂
hi Enya Blue, you’ve had advice from all the (knowledge/experience) heavyweights on here … just to say I’m reducing Pred very slowly, have taken 3 years to get from 60mg to 3mg … one flare… but although latest blood tests were “normal”, I have permanent fuzzy lethargy at the moment, and some joint pain. Advised to keep reducing very slowly but no idea where I’m going with this …my advice is only yes, go really slowly. I reduce half a mg every 5/6 weeks. Dying to go for a long walk! Good luck x
Welcome. You may consider keeping a daily diary. You will find it useful to refer back to as it is impossible to remember everything that may come your way. It can be just a simple page with date, dose, how you're feeling and what activities you did during the day.
Dear EnyaBlue, I agree about this site -- it has been a wealth of reliable information and a shining light on my path to slow progress. It sounds like you are doing the right things by checking your inflamation levels--- I totally agree with DorsetLady's recommendations of checking the nature of your headaches, and visual disturbances--- in my tapering path, I have had various symptoms such as headaches that have lasted weeks and then disappeared--- i think now they were the result of tapering--- but it is really important to let your doctor know about them. When I had symptoms, I did not do any tapering even if my inflamation levels were "normal". Before I tapered I try to be at a "low normal" for me--- when I have tapered at a "high normal" it has not gone well. I am currently decreasing 1/2 miligram at a time and my body seems to tolerate that much better but I am at 3 1/2 miligrams now. Your doctor and the experts on this forum can help you, I am sure!!
Your challenges are not easy--- but there is hope!! stay with this group and you will get sound advice and support in your slow and gentle path!
I don’t have PMRG but my husband has. I am an old hand with steroids. When you get to a certain level and it’s different with everyone you get to a stage where everything comes back. Don’t get discouraged as it’s normal. I would be increasing my steroids by 1 my for a month. Then try reducing again. Saying this it’s wise to see your GP and discuss any problems with them
When you get to a certain level and it’s different with everyone you get to a stage where everything comes back. Don’t get discouraged as it’s normal.
That may be the case in some auto immune diseases, but not necessarily in PMR - if you are on the correct level of Pred for the disease activity- everything shouldn’t come back… It usually happens when the patient has been put on too fast a taper, or has been too active for the dose they are currently on.
It’s about finding that correct dose and as you say it’s so different for everyone. My husband is now on 1mg so doing really well he had some setbacks but he says he is very happy with that
It has nothing to do with cortisol - it is purely because the disease is still active and there is no longer adequate pred to manage the inflammation. Pred is not a cure, it is a management strategy to manage the inflammation and relieve the symptoms until the underlying autoimmune cause burns out and goes into remission. If it were anything to do with cortisol then there would be no flares at higher doses - as pred is a far more effective antiinflammatory than cortisol and overrides any cortisol role.
Thanks to everyone who has given advice and support and information on here over the last few days. It's been immensely helpful.As a result, I upped pred to 10mg on Saturday and my symptoms are changing, but am going with this dose for a week at least before coming to any conclusions.
Also, have just secured an appointment on Friday with Opthalmologist and will mention GCA, my eye disturbances etc.
So I'm following the advice that a lot of you on this forum with more experience of PMR have of this condition. Thanks again
Result of opthalmology appointment was that my eye pressures are down to 16 & 17 from 27 & 28 in about 7 weeks after using the prescribed eye drops. So that's good. I asked about GCA and told him that I had experienced eye disturbances, he said to speak to my GP, pointing to the side of his eye and saying it can cause blindness. I said yes, I know and could he examine me for potential signs. He said no, go to GP and get a blood test.
It seemed to me that as my appointment was for high eye pressure/potential glaucoma that is all he was concerned about. This was an NHS appointment which has been outsourced to a company, but he was definitely an eye doctor because he told me the hospital he was based at. My assumption was he was possibly doing a locum job for this organisation and had a fixed amount of time for the appointment. This is the 3rd appointment in 4 months and each time it's a different doctor..
I haven't had any further problems with eyes and feel much better generally now that I did as you suggested and upped pred to 10mg. Thanks for your support and advice. Much appreciated.
Good news about pressures, but not so good on rest of appointment - but probably for the reasons you stated.
Glad to hear the increase in Pred helped…. I’d be inclined to stay there until next appointment- and then restart tapering - telling GP the issues you’ve had, and remind them, the guidelines do say that from under 10mg, reduce by 1mg every 4-8 weeks depending on disease activity and patients wishes…. And that if necessary you like to take it slightly slower this time bearing in mind what happened before.
Yep. I'm staying at 10mg. Have GP appointment on 21st Sept and will tell her what I am doing and why.
I understand about tapering drugs slowly, but this is my first experience of pred. Have been tapering an SSRI drug for the last 3 years, believe me it is nothing like the advice given by GP or Nice guidelines or even drug company advice. But that is another story.
You can have GCA and lose your sight without there ever being any sign in the eye - only if there is chronic/longstanding impairment to the blood flow to the optic nerve will there be an effect on the optic nerve where it joins the retina, making it pale and swollen. That won't be there if the risk is of a clot blocking a narrowed artery.
My diagnosis earlier this year was PMR and I understand that this is related to GCA and that some people can have both from what I have read on here. I also thought I had read on another post that an opthalmologist is trained to look out for GCA when examining the eyes, is that correct?
I was told by the opthalmologist I saw about 7 weeks ago that my retina is good and there is no damage to the optic nerve, so my understanding is that I therefore do not have glaucoma. Are you saying that GCA can be caused by optic nerve damage, and/or blocking or another artery that links into the eye. Again my impression from other posts is that diagnosis is difficult even with ultrasound or a biopsy unless a giant cell is seen. Thanks for all the info, I am on a steep learning curve.
Actually it’s the other way around -it’s the GCA that can damage the ophthalmic artery which is a small branch off the carotid artery. It’s the ophthalmic artery which feeds the optic nerve -and if the artery is blocked by giant cells it cannot get blood through to the optics nerve..as I know from personal experience
You can see from picture the ophthalmic artery is deeper within the head than the other arteries which is why it damage cannot be seen by naked eye -unlike the temporal arteries. Despite what many think, the temporal artery is not the one that causes sight loss, it just the easiest one on which to carry out a biopsy.
Giant cells are spread randomly throughout arteries which often make them difficult to find in biopsy
They are trained to look for the effects of GCA on the retina but it is possible to have GCA without any such symptoms. Ultrasound doesn't require the giant cells to be see - it looks for changes in compressibilty of the artery wall. Just looking at the retina won't diagnose or exclude glaucome, it needs other tests too. The biopsy is looking for giant cells but they may not be present in the sample looked at for a few different reasons.
GCA isn't caused by damage to the optic nerve, it is the other way round, the optic nerve may be damaged by GCA. DL has explained.
Great information PRMpro and DL, and an excellent picture/diagram.
Final question, without wanting to be self absorbed or OTT about it, what do I need to look out for?
When I see GP in a couple of weeks, I will mention the upping of pred due to disturbed vision/migraine, return of stiffness/discomfort etc, but as recent CRP test and ESR plus other bloods are 'normal' I am not sure what else came be said at this point in time. I am now better informed and know that PMR is not a 'take this pill and all will be well type of condition' and like many others on here want to maintain health and fitness as best I can for as long as I can.
You need to proceed steadily with your taper - not too large steps down and not too oftem. Not more than 10% of the current dose is recommended and not more often than once a month. If PMR symptoms start to reappear, go back to the previous dose and then try a smaller drop once everything is back to well controlled.
Be aware of the signs and symptoms of GCA but don't be paranoid. Disturbed vision is an obvious but worsening PMR symptoms, sweats, feeling more unwell require some thought. If you aren't sure - ask here.
..as recent CRP test and ESR plus other bloods are 'normal'
Unfortunately that’s not as a definitive answer as some doctors is think - for a number of reasons,
they are being keep artificially low by the Pred,
who’s to say ‘normal’ according to the system are normal for you, the patient, bloods very often lag behind symptoms.
Symptoms which may or may not be GCA [and that’s the problem] - Most people will have some, but not all of these. The most common symptoms of GCA are:
headaches, often with severe pain and tenderness over the temples and the scalp – it may be painful to brush your hair or to shave. Headaches from GCA can cause pain elsewhere in the head too including earache or tinnitus
thickening or tenderness of the blood vessels at your temples
pain in the jaw or tongue when chewing
severe tiredness that affects your quality of life, otherwise known as fatigue
flu-like symptoms, such as a mild fever
sweats, during the day or night
weight loss
double vision
rarely, loss of sight, which can occur suddenly. This may be partial, but it can sometimes be total. It’s usually temporary in the early stages.
If you have any changes or problems with your vision, or jaw pain while eating, you should see your doctor straight away.
I always say, just be aware, but not paranoid. It’s always useful to keep a diary - not War & Peace, but salient points.
That is a great help. Thank you DL and PRMpro. Great advice as ever. And the list is very helpful. I'm taking a rest now whilst the sun is shining, hope you are too, this is our late summer and it's time to put our feet up. 😊
Interesting that many people mention things went wrong when they dropped below 10mg Pred, self included. Drs Quick and Kirwan advocate keeping patients at 10 for a whole year before futher drops. As this is a novel idea and no further research went into their findings, it hasn't widely caught on, but makes a lot of sense to me, I'm sure it would avoid a lot of yo-yoing for many people. researchgate.net/publicatio...
I'm sure it is because it stops doctors trying to force a reduction at a point where the underlying cause of the PMR is still quite active. Once you yoyo you are almost certainly in trouble.
Exactly, I have realised, by my own experience and being on this forum, that there is no point trying to reduce below the amount of steroids your body needs to control the inflammation. That will differ for everybody obviously and involves a bit of trial and error. I was started on 10 which worked well but then told to reduce by 1 a month, whihc uld have meant me getting off the steroids in a year, whereas even the limied guidance docotrs have is that PMR lasts 2 years. By the time I was down to 5 i could barely walk and in as bad a state as before I was diagnosed, but I knew no better and trusted my GP knew what he was doing.
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