To what extent do you agree? "I would rather take... - PMRGCAuk
To what extent do you agree? "I would rather take the risks of side-effects from medication than lower my quality of life with PMR symptoms.
PolywotsitPMRGCAuk team member152 VotersPlease select one:
Hi everybody. If you have PMR, please participate in this poll, as quickly as possible. We need to get some material to feed into a discussion among rheumatologists about the attitudes of PMR patients to risks associated with medication (primarily steroids) against the benefits of feeling better. Many thanks!
Kate
Hello Kate . I read your article in The Saga Magazine and I was very impressed with it . I have had PMR for a long time now ( 9 yrs ) . I have been on a topsy -turvy road with steroids getting down to 0.05mg a few times to be told this may be my dose for the rest of my life. I am now on 14.05mg and have to stay with this dose for a while at the moment .Whilst I was down to 5mg , flare -ups came along so that was when the steroids were put up again I have lived with this all the way through but I was told by a Gp last December 2012 that it was impossible for them to deal with my steroid reduction I felt devastated and begged to see a New Rheumatologist as the Previous one had given up on me as well. Its very hard to understand that so many people can reduce and others seem to have such a hard time of it . I have always trusted my medical team and have taken all the medications that they have prescribed to get better quality of life, getting lots of side effects on the way. I am now with a New Rheumatologist that I trust very much .This week I have started back on Amitriptiline 10mg going up to 20mg if I can and I am going to have an MRI scan at the end of November on my spine. So it is a long journey but I must keep believing that there will be light at the end of the tunnel one day. Sorry to go on but there seems to be a lot of New Sufferers posting at the moment and what I/they need with PMR is a lot of Patience and Good Medical Back Up trish29
Thanks Trish. We were pleased with it too. That article was the work of Patsy Wollacott, a journalist whose mother has PMR. It just goes to show how a little bit of personal experience, even at second hand, can make all the difference to understanding. x
Hello Kate , That Saga Magazine was given to me by my 93 year old friend who lost a sister a few years ago who had suffered with Pmr for a long time . When she discovered I had it and how I had flare-ups she said she wished she'd been kinder to her sister and said that she never really looked ill but was always tired and had lots of headaches, that's PMR for you. I hope that my MRI scan may show up anything that might help my Rheumy make any decisions for the future as the pain from the spine is definately aggravating the PMR pain. Keep up the good work Kate ,this is a wonderful Forum so much support from fellow sufferers and you and Celtic andPolka dotcom have lots of information for all of us that are still dealing with awful condition. thanks trish29
That's quite a sad tale about the friend with her sister, isn't it? But maybe quite typical. I was just thinking, has anybody ever suggested that you could go onto methotrexate to help you off the steroids?
Hello Kate.. I took methotrexate a long time ago and was on it for a long time. I went through a lot of side affects such as, nausea, migraines,and other nasty stuff, I persevered for a long time but was taken off it by my Rhuemotologist at the time because it affected my Liver. During the 9 years I have had PMR I have tried so many medications Azathiaprine was another one. I have been down to 0.05mg a few times but hurdles have got in my way like flare-ups or a virus ,and then you have to start all over again. I am now with a New Rheumatologist and a week ago I started back on Amitriptyline 10mg. I feel a bit better in myself but even this medication gives me muzzy heads . I am determined to give anything a try.. I am quite concerned that I am due to have a flu jab in about 10 days time and for the last 2 years I did get side effects after the jab but both GP and Rheumy think I should have one. I will start to try to reduce the steroids again shortly but I will take it slower this time around ,until I get my MRI scan done. Best wishes trish29
I asked my Rhemy this question. I was on Methotrexate many years ago for arthritus, and It helped me, and stopped it from spreading. My Rheumy said no to methotrexate as it is a strong medication, and one has to have a blood test every month to check the liver.
Is that money talking again?
The secret is when reducing, is very gradual reduction. the slower the better, as this will fool the body that is accepting the correct dose
Hello estherdevers, thank you for your reply . I know about the slow reduction plan and it worked on me for about 3mgs ,then I picked up a virus and it all went pear-shaped again.. I will start on another reduction plan in about a months time and will take it slower with Xmas around the corner. My Rheumatologist is OK with this. I see my Gp tomorrow and will see what he has to say . Thanks. trish29
I have been on steroids for 18months after being diagnosed with GCA. I have tried several times to reduce my dosage, but find that the slightest stress aggravates the problem. I can deal with the pain fr from PMR and and fybromyalgia and the side effects of the steroids but the thought of having a stroke is more frightening. .I find that most of the medical profession do not have enough knowledge of these conditions and are to ready to stop the steroids. What are you supposed to do/
Hate having PMR, hate taking steroids because of the side effects, but would rather put up with the side effects of the medication, than live in pain and discomfort, steroids do help, unfortunately I did develop a DVT, doctor thinks it was due to steroids, and inactivity due to leg pains,
I felt I had no choice but to take the steriods. I was not able wash or dress myself when I was at my worst. Could you feed back to the rheumatologists that could they think beyond just the steroids and consider dietary advise and exercise programmes adapted to suit people with polymyalgia and osteoporosis. It was only when I changed my diet (anti inflammatory) and took up gentle exercise and yoga that I finally felt that I had turned a corner. It took 4 years to find out about the diet and the exercise. Since I adopted these interventions last years my CRP has dropped to 12 ESR 23. I am currently taking 4 mgs of steroids and reducing my dose at 1/4 mg over 7 weeks. My symptoms are about 80 per cent improved. I feel there needs to be a more holistic approach to managing this disease. It was only the web page that pointed me in the right direction. Greater levels of multidisciplinary support needs to be provided by health services
It is a love hate relationship with steroids; love them for keeping me out of pain, but absolutely hated the side effects. I was lucky that my PMR subsided after four years, and I am now able to continue my life without steroids. Fingers crossed that this continues to be so. Still get very fatigued though but I can put up with that
I am in the process of reducing my tablets from 25mg to 10mg over the next 6 weeks at the moment I am only having an annoying side effect of itchy rashes. So I have been lucky at the moment with the steroids.
Hated the thought of taking steroids and the side effects, but if it keeps the pain of PMR away and also saves the sight in my remaining eye, I will tolerate them. It's a pity my GP didn't give them to me sooner then I wouldn't have lost my sight.
Hi All
I developed PMR in 2006 and was put on 30 mgs of pred for a year then came down gradually to a maintenance dose of 10 mgs, which just about controlled my pain along with opiate patches. However 8 weeks ago i developed severe pain in my temple region both sides. I was commenced on 60 mgs of pred for two weeks then reduced another 10 mgs for 2 weeks and am currently down to 30 mgs where i have hit a brick wall in that the pain in my temple region has come back.
I have an extensive med history, short bowel syndrome due to a to a blood clot in my small bowel in 1983, causing 12 ft to be removed. As a direct result of surgery i have developed megaloblastic anaemia treated with B12 injections, malabsorption syndrome and numerous ops for recurrent bowel obstructions. Over the last 10 yrs, hypothyroidism, mini stroke, osteoporosis, fracture thoracic region, degenerative spinal probs, history of prolapsed discs, long term chronic pain etc.
Two of my consultants have recently written to my GP requesting a referral to a rheumatologist which he is refusing to do atm, on the basis that there is only one specialist locally who is sceptical about diseases such as PMR/GCA and is likely to dismiss this diagnosis as quote "he is only in his comfort zone with text book conditions such as rheumatoid arthritis." My GP whom i have been with for only a year likes to be in control of all my care and meds with my opinion accounting for very little.To date we have not actually discussed in any real depth what PMR/GCA is; treatment options and possible side effects and implications of steroid treatment or the disease its self. I have elicited most of the info myself from this wonderful website!
As a point of interest can i only see a Rheumatologist in the Health Authority where i live or can i ask to be referred elsewhere?
I have gone from an active, healthy, happy person, to one that feels my life is ebbing away with constant pain, poor mobility, memory fog++, loss of a wonderful career in nursing, feeling socially isolated & at a loss at what to do next.
Kate please tell those rheumatologists from me that yes we as patients are well aware of the dangers of steroid medication and it's scary stuff but until they themselves experience the side effects of this awful disease then taking the steroids is worth the risk as it least it helps me get out of bed in the morning.
More importantly they need to take a much more pro active approach to patient care and look at their patients holistically, rather than the current situation of being under several Consultants who are only interested in their own specialty. This only serves to cause confusion by being given conflicting advice, opinions and ultimately very fragmented care for many of us dependent on their input.
I wholeheartedly agree with Faygirl, that a multidisciplinary team approach to care by involving patients in discussions and decision making, particularly for those of us whom have diagnosis's that fall outside the realm of more well known conditions can only be a positive way forward.
Good luck Kate and all the best to the rest of you out there still suffering.
Cezzie x
If you are unhappy about Dr and referral , make a stand and complain to your local Health Trust, and demand specialist advice. NHS, Its all about money you know
Yes, if you are in England, every area should have its own local Healthwatch organisation, which should be doing just what it says on the tin - watching.
Hi All,
This is a very thought provoking poll. Too bad it did not allow for comments to qualify the selection.
For example, my choice was 'agree'. But here are my qualifying comments, based of course on my own experience.
I have chosen to be on prednisone, knowing full well the risks and possible side-effects. It has given me back a life.
I also chose not to take fossamax because of the potential side-effects which can be devastating. I have also chosen not to take naproxen because it hurts my stomach. And so on. The point I am making is that I have made informed decisions about the medications that I take to manage this condition. (of course one has to have an MD who will prescribe for the condition correctly and extend to you the courtesy of being an adult consumer able to participate fully in one's own well- being).
And I do agree with Faygirl's advice about anti-inflammatory diet, and gentle everyday exercise. The combination are not to be underestimated, and it is something you can do for yourself, everyday, as best you can... Keep moving, and eat well. Sort of a twist on 'Keep calm and carry on', but not as catchy.
Anyway, I wish all of you wellness, and may God bless.
Dorothy
Thanks Dorothy. We really value these comments, they add some 'qualitative' substance to the numbers. We really want to be able to give people clear advice about an 'anti-inflammatory' diet. However, the problem is that there is almost no reliable research evidence on the benefits or otherwise of any kind of nutritional change. So as an organisation we are not in a position to endorse anything. And why no research evidence? You guessed it - because research costs, and turmeric farmers can't afford to fund research projects. While huge global pharma companies can. So bringing sufferers together so that they can share experiences is one way forward.
When PMR hit me I went overnight from a busy life to struggling for ages to get out of bed and get dressed. I was completely housebound. Thank goodness for my wonderfully helpful husband otherwise I might have starved. The pain was dreadful and lasted all the time. It was such a struggle to move. I was very frightened of taking steroids and all the other medication but felt that I really had no choice. Having been treated throughout by my GP I feel that more support in the early days would have helped when I was shocked to be diagnosed with a long term illness which I had never heard off. A 10 min appointment is not long enough in these circumstances. In fact I only started to get better when I changed GPs and found one who was more supportive and who offered some advice on exercise and diet(to control weight and keep healthy rather than reduce inflamation) and who has generally been interested in the impact of the PMR on my life.
Hi Kate,i voted Disagree,i can manage my pmr most times with rest and painkillers,but after having 3 hip operations and expecting another and all because of Prednisolone and Methotrexate i am getting a little tired of the medication.
Gosh, don't blame you! All the best for a full recovery.
PMR hit me overnight. I woke up unable to move and unable to reach for the phone on the bedside table to call for help. I was terrified and had no idea what was happening to me. PMR was diagnosed but I was scared of long term steroid use and tried to manage without... After three months in helpless agony unable to move unaided or dress or feed myself I had no choice but to give in and take the steroids. Even with help the simplest movement had me in tears and I couldn't take any more and my husband could not bear to see me that way. The pred gave me back my dignity...unfortunately it thinned my bones in the process. I hate the effects of the pred but I doubt I would have survived this long without it. It is a necessary evil...and I will be glad to see the back of it.
I agree with Rockyandzeus. I take pred, but by injection because steroid tabs make me suicidal, and mtx, but am refusing to take alendronic acid - and I think my response to the survey would also be 'qualified'.
I have the good fortune to be able to have nutritionist - she has answered questions that the NHS do not have the time or, sometimes, the experience to answer. She would prefer me to be drug-free, but is working with me whilst on the drugs as I was so ill I needed urgent help. I am so grateful for the drugs and my excellent Rheumy, who would not put me on steroid until she knew what she was giving them to me for (meant much pain and angst going through all the tests whilst having no idea what was wrong with me, but worth it).....but do not want to continue on them - and some, like AA, I will not touch with a barge pole because of long-term effects. The nutritionist is balancing my body and thinks that the slight osteoporosis I have may have been caused by my body fighting itself and not absorbing what my bones need for health (But this is a judgement that you need very clear advice on and based on tests and the person's history, so not something everyone should rush out and do please!!). The Rheumy has recently increased my dose of mtx - and I'm now getting horrid side effects, so am going back to the dose I can handle. I think you have to balance out what you are prepared to take in terms of pain and lack of movement versus drug amounts that have side-effects for which you end up being given more drugs to counteract!
Now that I suspect I'm getting some life back I feel strong enough to take on board more holistic things that will not work so fast, but ultimately will not damage me further. The changes made to my diet to date have been wonderful and I don't want to go back to having processed food, sugar or caffeine, even once 'better' - I feel too good and know these damaged me! I also grit my teeth (sometimes literally) and exercise, exercise, exercise - all in small doses (in the early stages of the condition it was a daily shuffle up and down the hall), but I do feel better overall if I can do this - sitting around makes it all so much worse. Drugs alone cannot do this for you. I don't care whether there's scientific evidence or not, if the experiences of many real people can show that holistic things work...does it matter if it is all in the mind as scientists say? Isn't looking after the mind important too - and even mood can have a big physical effect??
So, my attitude is take drugs if you have to for a short while - but chemical drugs long term are not a good idea. Far better to look at the personal core reasons for the condition and do something about them. GCA may be different though - as eyesight is so very precious......maybe people with GCA would give a very different answer to those of us with PMR??
maybe if there were more research instead of just looking at meds, smart scientists could figure out what this disease really is.. everybody on this forum seems to have a slightly different illness. do we know if there is a progression, what else works besides the dreaded pred and so on. will diets help as some here say. is it because so few people have PMR? i spent over a year getting tested and having drs say we don't know. finally a rheumatologist told me what it was and treated me with pred. but the side effects were horrendous and when my blood tests were normal he took me off. that took 18 months. i'm still not well but out of pain. stiffness and swelling and fatigue and muscle weakness have not gone away. Been almost 3 years now. Still can't bend to dress or walk instead of shuffle. What the heck is this PMR thing? Why do scientists look for a pill instead of a reason == sorry i'm very bitter that smart people can't look beyond pills etc I know this won't kill me but it has wrecked my life
