I am new to this terrible illness,(if I have it,yet to be confirmed due to other complications.) but on thing O do know is that I am fast learning to respect this horrid drug called prednisolone,and very angry that it should be used in what seems to be an irresponsible fashion.Surely the medical people should be able to provide a stop gap medication prior to establishing what the problem is and dishing out this dangerous tablet.
Since December I have been on 15mg,20mg,60mg and now working my way down.I have reached 15mg and the shoulder,neck hand pain has come back ...... along with sever overnight headaches which I take Codein for. The doctor says my case is complicated due to Non H.Follicular lymphoma and recent bout of pneumonia.(two stays in hospital for that,) and pred' all affecting my immune system.
I need to learn more about pred' adrenal behaviour,how all of these things knit together including coming off pred 'too quickly.I can't get to see my G.P. because of the virus but I certainly feel that no one is interested. All I want is to find out what I have got,what medication I need etc.
I have piled weight on,got an horrendous moon face and cannot get a proper nights sleep.Five months ago I was a retired rugby player walking 5/6 miles five days a week,I'm lucky to make it to the bathroom thanks to this poison that I willingly stuck down my throat.I daren't start on my poor wife who I overheard crying to one of her friends about wanting the real me back.It really has been a shocking eye opener.Any advice,suggestions would be great . P.S. I have already considered the short rope option.(only joking,)
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yorkieme
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I am not sure I can give you any answers but just wanted to share my experience as it might help? One thing I have learned from this forum is the different medical experiences people have had. Despite my gp and I both being convinced that I had pmr I was only diagnosed after an exhaustive series of tests at guys and kings (I live in London). I was told that this was because pmr shares symptoms with many other diseases and that there had been so much over diagnosis of pmr and consequent over prescription of steroids that only a rheumatologist could provide a diagnosis. At the time I was in such pain that I was only too happy to take the Pred and I am pretty sure that I was told there were no alternatives anyway. I started at 15mg and now at 4.5 mg but continue to take a multitude of tablets to mitigate the effects of Pred. I have had no weight gain and no moon face but I definitely suffer from fatigue and stiffness in the first week or so after a taper down. The advice from my gp was not to panic but to rest and try to walk through any stiffness. Daytime naps, yoga and hemp tablets have all helped me enormously. Dexa scan have shown that my hip density is not what it should be so for that and many other reasons I am determined to get off the Pred as quickly as is safely possible. Had I known how difficult it would prove t get off Pred I think I still would have taken it. In the 2 months pre diagnosis I was practically bed bound and my husband said he felt he had lost me as the pain caused me to totally withdrAw. I wish you the very best and hope you can get some medical help.
Thanks for taking the time to reply.I can relate to so much of your story and my feeling is that after reading all the replies I will have a better understanding.I do know that every poster has a different experience/story but there are connecting points. and that helps. Take good care,especially right now.
Hello, I can understand your huge frustration which isn’t helped by the distraction of medics right now. Here are some questions. Have you tried to get a telephone consultation? We’re you given any sort of plan by anyone as to diagnosis or reduction of Pred? Or have your pneumonia infections got in the way?
What had the eye specialist said that made the doc think GCA?
If you do have either PMR, GCA or both, Pred is still the mainstay of treatment and if any suspicion of GCA exists it would be negligent of a doc to stick you on some “stopgap” just to get rid of pain while a diagnosis emerges. The only definitive tests are the artery biopsy or a specialist ultrasound, but unfortunately once you are on Pred a reliable result becomes less and less over time, especially on high dose. This is the trouble with GCA; you can’t risk someone going blind while you wait for the biopsy, that is negligent but it happens. Also, people often have normal blood tests and in your case your inflammation markers are probably being raised by other factors so are not reliable as a diagnostic tool either. So, as for many people, the only thing to go on is the response to Pred. This happened to me at 54 when I was put on 60mg and it turned my life upside down - normal biopsy and blood results.
The Pred is there to prevent damaging inflammation which in the case of GCA can lead to blindness and stroke. It is not a cure, it manages the effects of your body deciding for whatever reason to attack its own arteries. Just taking strong pain killers or roughing it out risks the inflammation not being tamed and in any case for these conditions, normal pain killers don’t help much. Reducing too fast risks re-emergence of the disease activity and having to go back up a dose level or two, so slow and steady is best.
So, side effects. Mood face - It’s upsetting but will go and is par for the course, as is the redistribution of fat to the tummy and back of neck. Weight gain and development of diabetes - This can be well controlled with an ultra low carbohydrate diet. Also super low salt will help stop the fluid retention. Of course the doc needs to ok this, though they don’t usually know about this approach and just see massive weight gain and diabetes as inevitable. Many people on this forum, me included, have done this very successfully, even with pre-existing diabetes. It also helps stop the hunger attacks if you get them. You should be getting checks on your blood sugars (HbA1c) anyway, every 3 months would be nice in your first year.
Sleep deprivation and mood swings can be troublesome and some find some medicinal help very beneficial, via a doc, so do try to speak to somebody. I existed on napping and avoided reading or watching anything emotive for a good year or two.
It is difficult but one has to make peace with Pred because it is doing you a big favour. Many many rage against it, you’re not unusual, but it is not the enemy here. I think it hasn’t helped that it feels like the docs have cast you adrift.
I’ll stop here, because you’ll get many other replies. It will get better.
Many thanks and kind regards,some very usefiul info' there for me as a learner.
It would really be helpful if you try and ask specific questions. I can't understand what your Dr is treating you for...GCA or PMR? Very different issues arise for doses at different levels. Without pred these vasculitis can cause other damage if not treated by pred.
You may be struggle with pred but for many on here with GCA pred has saved their sight, The drug is a miracle for many on here and gives their life back.
When steps are taken to manage side effects life becomes easier. Occasionally people suffer by reducing too quickly which is harsh on the body. The drs have to discount other diagnosis and to be honest headaches returning/occurring could be a sign of GCA so you really need to clarify what your Dr is treating.
If you have PMR then that alone limits movement rather than the pred, especially so early in your treatment. You have obviously gone below the dose that controls the inflammation. You need to rest, stop fighting, eat a low carb diet, and just relax. You need to discuss upping the dose until you get relief.
Pred cause random spikes in your blood glucose which is why you put on weight. If you adopt a low carb diet this lowers the intensity and length of these spikes and should control weight and some of the sweating and general.malaise. I can tell you as someone with diabetes high blood sugar makes you feel rubbish.
My message, if you have PMR or GCA them pred is your friend. It is at the moment the only successful treatment for PMR. And the first line treatment for GCA .
Take a breath, forget what you usually do in life...for now...and rest, gradually building activity up. You are living a different sort of life for now if it is PMR, one where diet, pacing and other lifestyle changes need to be made...anger and frustration are natural for some but NEVER help any health condition. In the meantime have a look at old messages. Good luck. 🌻
Yes, it seems that when people reduce too quickly with no advice on side effects management they end up with unmanaged symptoms and feeling the side-effects so there is no apparent trade off; it’s all bad, despondency all round.
It does all become muddled then doesn't it. That's what worrys me if no clear guidance given. It's hard not to panic and blame the wrong thing when a more systematic approach helps you identify what causes the problems.
Thanks to you and Snazzy.My GP is treating for GCA and the reason he put me on a high dose of 60mg .I had previously been to hospital with eye problems,(floaters ?) You may have found my problem,I was advised to reduce by 5mg/fortnight,but I have gone hell for leather reducing by 10mg in one week and 5mg in others,probably dropped total of 45mg in five/six weeks.Is this why the headaches and muscle pain are back do you think.
Just the quickly changing dose could be enough to cause the headaches and other pain - it is often called steroid withdrawal rheumatism and for some reason often mimics the disorder for which you are taking the pred in the first place. You needed that starting dose for long enough to get the symptoms well under control. Then we would never suggest more than 10mg a month even from those high doses - and 5mg every 2 weeks gets you to the same place with less discomfort. A reduction step really shouldn't be more than 10% of the current dose.
Thank you for the advice.I really should remember just how busy my G.P. is,I have a great relationship with him and I know for certain he would keep my best interests at heart.Time for me to calm down.
Quite possibly. When you reduce very fast you can get two things, withdrawal symptoms and re-emergence of the inflammation, both of which can make you feel wretched and sometimes can’t be distinguished from eachother which can be problematic. The idea is to reduce slowly enough so that what withdrawal symptoms you do get in the early days can go and then you wait to see if you’ve gone too far to hold the inflammation. You are aiming to get to the lowest dose that will hold your inflammation at bay. If you do big jumps quickly you don’t know with any accuracy where the step too far was. For example, if you drop 45mg in 5 weeks your step too far may have been 44mg or 29mg or any other number, so if you get a flare in symptoms your only choice is to go way back up in dose instead of a little bit to the dose just before problems started. You can end up having a much bigger dose of Pred than you needed which is a shame. Add to that all the withdrawal aches and pains and you have no hope in hell of knowing what’s what. This is a link for the updated guidelines, see table 2 for a starting reduction schedule. Just as an example, because my eyes and symptoms recovered in hours of the first dose I was on 60mg for a few days and then 40mg for 6 weeks. Then I could only tolerate 5mg drops down to 30mg and then 2.5mg drops etc. This is a suggestion and not everyone can go at that speed, I certainly couldn’t for the withdrawal symptoms alone, so it has to be tailored to the patient.
By the way, the adrenal bit won’t be an issue until you are below 10mg and if you hurry that bit will hit you like a train. From 7mg I was reducing 0.5mg per 6-8 weeks but other can do 1mg per month. Ideally the lower you go the slower you go for maximum quality of life.
I do realise that your current anger does stem from the fact you are on a moderate dose of pred and that is a common cause of such an effect. However, I think you are really rather overstating the situation: PMR is not, in the great scheme of things, "a terrible illness" and pred is NOT a poison or terrible drug that is used indiscriminately or irresponsibly, it saves lives and vision and provides most of us with a tolerable quality of life until the autoimmune disorder that underlies the symptoms we call GCA and PMR. It is a very POWERFUL drug - but that is another matter. It has been in daily use in the healthcare situation for well over 60 years - there is very little to be learnt about it. It has adverse effects, of course it does and some are unpleasant for some people, but so does every other drug listed in the British National Formulary. Even paracetamol or ibuprofen.
PMR is not a terminal illness, it does not cause permanent damage even though it may be rather disabling if you ignore common sense and try to carry on regardless. Undiagnosed and untreated GCA could result in cardiovascular events (stroke, heart attack) that COULD result in death - they are, however, relatively rare and the increased risk is in the first 6-12 months after diagnosis and initiation of treatment. In the vast majority of patients both will burn out and go into remission eventually, within 2 years for about a third, longer for others. In the meantime it can be managed fairly well with low to moderate doses of corticosteroids and lifestyle changes - although initially the doses may be higher, as they have been for you, but those doses are reduced to more managable levels within a few months.
Since you obviously did have some signs of GCA (you would not have been put on 60mg pred otherwise) perhaps you need to reflect on the fact that that potentially saved your sight - given in a timely manner, pred, and only pred, is guaranteed to prevent the irreversible total loss of vision that is a very real risk with unmanaged GCA. That 60mg pred and its effects are a small price to play for not being blind don't you think? We could give you links to posts here from the families of older patients who cannot join the forum themselves because they HAVE lost their vision, often overnight, because their GCA was not recognised and very high dose pred given. 60mg is the bottom of the dose range for GCA, many patients need 80mg and a few get extremely high doses i.v. in an attempt to save their sight that is already affected. Sometimes even that does not work. Once the sight is gone in one eye there is a 50/50 chanc of loss of sight in the other within a few weeks.
"Surely the medical people should be able to provide a stop gap medication prior to establishing what the problem is and dishing out this dangerous tablet."
If there were a stop-gap medication - as you put it - they would use it. But very high dose pred IS the stop gap medication on the way to lower dose pred to manage the inflammation. In the case of PMR it is THE medication. In GCA there is now tocilizumab for difficult to treat cases, ones that don't respond except to very high doses over long periods. In the UK funding for it is limited to difficult cases and generally for only 1 year - it costs IRO £12K per year. But it also has not inconsiderable risks for some patients, makes you very likely to develop infections and then you have to miss the injections until recovered. You are blaming pred for your infections - they are probably even more likely with tocilizumab. And it does not have the same immediate effect in reducing the inflammation that high dose pred provides so is not used on its own as an initial approach. Other medication? There isn't any - and before being surprised or angry about that, think about where the world is with regard to Covid-19: there is no reliable medication. Just time and the healing powers of the human body.
You mentioned adrenal function - at present that is simply by the by. Your adrenal function will currently be compromised as you have been on enough pred for long enough for it to be so. Before return of adrenal function becomes a factor you first have to taper your current pred dose to find the target dose: the lowest daily dose that manages the inflammation as well as the starting dose did. I only hear you talk about 5mg steps in dose - that is now too big a step, 2,5mg at a time my work but from 15mg many people find 1mg per month is quite enough to manage and avoid problems. And then you continue to try to reduce the dose slowly - the dose you need will usually lower as time goes on but the underlying autoimmune disease activity does tend to vary in the first 18 months in particular and as result so can the dose you need. If you reduce in too big steps or too quickly then you run the risk of flares of symptoms. But before that happens you must first get the inflammation and symptoms under control at your current dose. Only then do you enter the next stage of slow reduction to eventually get off pred. But that isn't going to happen immediately - and adrenal function enters stage right somewhere about 7 or 8mg daily dose.
If you want to be proactive in managing the adverse effects - how about starting by looking at your diet? One of the difficulties with chronic illness is the feeling of loss of control and dieatary management may help assuage that feeling somewhat. As has been mentioned already, it is possible to reduce the weight gain with pred by cutting carbs drastically, especially the processed variety and added sugar. For a lot of us we were even able to lose weight while still on pred if we were disciplined enough. Pred changes the way your body processes carbs and how the liver releases glucose into the bloodstream and also leads to excess glucose being deposited as fat in specific places: around the face, around the midriff and on the back of your neck. In addition you have had to restrict your exercise - and like all athletes who suddenly stop exercising you probably haven't restricted your diet. The result is weight gain. As a rugby player you know about discipline - treat it like training for a match. You can lose weight without increasing the exercise - it is just a bit different.
You are also very naturally angry because you are experiencing a bereavement, a loss of your normal way of life - and the current Covid-19 emergency will contribute to it. Most people are angry about that - you have a double whammy. Normally I would suggest seeking counselling but in the current situation I imagine it would have to be either online options or via video links. Maybe someone on the forum is aware of such options. But there are books and your GP may also be able to help.
You probably think I'm unsympathetic - but I really do understand where you are coming from. I'm providing you with some of the information you need to "come to terms" with this part of your rather unpleasant twist to 2020. But let's face it, we are all learning a lot about that in a lot of ways. Do ask your wife to read the responses you have had - she too needs to understand where it all stems from.
And I nearly forgot the thing I have said to almost every new patient on the forums for over 10 years: In a year you will look back and see how far you have come. No-one ever believes me at the time but most come back to the forum and say I was right, You won't see day to day improvements - this is a long haul flight for us all.
Great response,informative and reduces my anger.I do apologise for the rant and to a great extent it comes from ignorance of the illness and the medication,impatience is in there too as I want my/our active lives back.
Time for me to do some serious thinking,get real and look at what I can do to help my situation rather than work against it.Once again a very big thank you.
If you don't understand something you just have to ask here and someone will do their best to explain. It isn't entirely your GP's fault - if it really was GCA they would be entirely out of their depth and they should have treated it like they would have dealt with a stroke or heart attack, it is a medical emergency.
Primary care often have never seen a case before so you were lucky it was recognised as a possibility. And even rheumies don't really understand the ins and outs of reducing without too much difficulty. But we have all been there - and an unfortunate few have the t-shirts too.
I didnt believe pmrpro 20 months ago that things would change in a year and had a lot of tears but I can honestly say things are good now. Yes my life has changed but pred makes it a good life still and I am now down to 8mg and havent flared due to rushing things. I didnt do as pro and others said I should in regards to my carb intake and put on two stone by making my fridge best friend!! I have since started to lose weight. I still eat mirecarbs than I should probably but cutting back has made a difference and it will with you. Slow down and accept things have changed but that life does go on and you will develop a new norm. YBB
This might help you see it's hard to negotiate the changes you need to adopt for a while. It's the profile of a member who was very active when PMR started.
Thanks PMRpro! You’re shared insights and wise counsel via experience are much valued and appreciated! I’m learning so much from the forums that is assisting my PMR dance and most help from you! I’m reading everything you write...and look forward to a year from now! 😉👍🏻😉
I can understand your frustration at not being “diagnosed” - but some on here (PMRpro and myself included) have had to wait a lot longer than a few months.
As for Pred being used in an irresponsible way - if your doctor thought there was a possibility of GCA then he acted very responsibly - wish mine had considered that before I irretrievably lost sight in my right eye.
Anger is natural - partly due to the medication, partly to the loss of your old life - but the sooner you come to terms with that aspect the easier you will cope.
Others have given advice on diet etc, but can I can suggest you read this link - it might help you - and your wife (because she needs to as well ) understand your illness and way forward -
No need to feel humble (do Yorkshire men do humble? 😁) - anger and frustration are very normal reactions, especially early days. We’ve all been there - and having a good rant is very often recommended on here 🤣😂🤣. We understand - fully.
Any questions just fire away - but as I said acceptance (not capitulation) will make life easier for all. You might not like what’s happening to you at the moment - but there is no point in fighting against it - PMR has the upper hand - just work with it not against it.
Bit like the current COVID-19 situation - we might not like it but we have to “accommodate” it.
Just to add...in terms of sleeplessness, I hardly slept properly for the first 2 years of Pred. I was then given Amitriptyline ( 35 mgs) to take in the evening which helped enormously! It is a strong drug and has side effects but if I forget to take it, I always have a bad night. It made me feel more sane again!
I'm an ex rugby player too, and also a Yorkshireman. God's own county!!!
I was diagnosed with PMR over five years ago, and am now down to half a
Mil a day of prednisolone.
Although I have an excellent GP, I can honestly say that it is this forum that has helped most- notably PMRpro and DorsetLady in the early more difficult days. I have followed their advice and taken my time, so have had no flares.
It is all very trying and you will lots of patience - then more patience again!
Seems to me you have received really good advice. You can always come back for more if you need it.
Thank you for your response. Already I feel much better and that is entirely due to some of the harsh truths dished out in response to my initial post.There have been a few softer truths too but all in all a lot to digest and think about.
Dorsetlady clearly has a good sense of humour,seems I may need to reconnect to mine.
I think it was the shock that brought me down,this sudden intense pain to someone who thought that he had a decent pain threshold and the complete and immediate inability to walk the hills/mountains of Snowdonia,(I live in Deganwy,right at the foot of Snowdonia,) reduced to having to roll on to the floor to try and get up only to find I couldn't. Shocking really,and that's where my anger came from.
Anyway,once again thank you,looks like I have a lot to learn but equally some pretty good tutors. Take care.
I have stayed in various bits of Yorkshire....that were Yorkshire, have returned left and returned to being Yorkshire territory. I would have left if an opportunity came up but it just happened this way.
Thanks for replying. Yes, it surely is a big shock to the system, and the pain, pre pred, was intense! I couldn't even put my arm out to take a glass of wine.
Furthermore, like many with PMR, and I guess GCA, I had never heard of either condition, so I had a lot of learning to do.
You've had an interesting day, to say the least. I am sure you will be able to cope better now with all the knowledge you've acquired.
But at least I managed to grasp the glass in two hands!
Anyway, five and a half years on I'm down to .5mg a day, so hopefully looking to zero later this year - not far off the average, and, with thanks in particular to you, no flares along the way.
I've read with interest your story and the excellent replies. Poopadoopy, PMRpro and DorsetLady have a wealth of experience and it's well worth taking their advice onboard. This forum and joining your local PMRGCAuk Support Group really helped me when I was diagnosed in 2013. Back then I was a 51 year old high altitude mountaineer, marathon runner and senior fire officer (and ex-PE teacher). Health and fitness were my life and within a matter of weeks I'd lost 3st (11st down to 8st), in a wheel chair and bed patient. That year I was due to climb Ama Dablam (Himalayas), run my 5th London Marathon and 15th Great North Run that year.
However, I won't duplicate all the excellent information but will suggest some of the things that will help over the coming months. Listen to knowledgeable people, have good support mechanisms such as family and friends in place, listen to your body so if you're fatigued just lie down and follow the structured steroid reduction programme at no more than 10% at any one time. Take your steroids in the morning after you rise and rest for an hour to allow the steroids to work their magic. Most importantly, accept the illness, work with it and don't fight it.
I eventually looked upon PMR as a positive as it gave my body a break, improved my mental health, made me more humble and patient, and more understanding of peoples needs. I worked with the illness, took the pred, and also took Vitamin D. Believe you me, there is light at the end of the tunnel and you will come through this a better person.
As an ex-rugby player you'll realise and appreciate the importance of the positive benefits of health and mental fitness. Listen to your body and eventually you will be able to start gentle stretching and light exercises. I got great benefit from hydrotherapy, then light physiotherapy and attendance at a rehabilitation centre. I maintained a daily log book (pred, mental health, physical fitness, exercise, diet etc) which I used to assist my discussions with my rheumatologist and GP.
After 21 months I came off the steroids and have twice returned to both the Himalayas and Atlas Mountains, running over 250 parkruns, and other events such as several UK 3 Peaks. There is light at the end of the tunnel, remain positive, look forward to the small victories, set yourself little goals but keep listening to your body, relax, try to stay calm, listen to some good music and have a wee dram. Talk to people on Health Unlocked and touch base with your local PMRGCAuk Support Group. There is a lot of support and friendship out there.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Spacing the medication!!!
Blurred vision in left eye and feeling muzzy...
PMR, exercise & tapering
Well I'll be damned!
Not sure if I have PMR and my preds are not working
