Alternatives in medication

Hi

I'm an icelandic woman and was diagnosed probably having pmr a year ago. Then it was so bad that I could hardly walk. I was prescribed prendisolone 50 mgr for a month and then reducing the dose little by little. In the period I had this big dose and until about 25-20 mgr I did'nt feel any pain but felt ill anyway. I felt depressed, irritable, my eyesight became strange and I often felt very feelble, like my leg could'nt carry me among other things. Now I' getting almost as bad as I was in the start of taking pred a year ago but my legs are better and arms and shoulders worse. Now I fear that my doktor insists that I start taking pred again. I cant think of taking iit so now I ask you if you know of other alternatives for me. I´m 68 years old, married, have a good family and economy. Furthermore I´ve got lots of interests and my main hobby is painting, reading and used to play golf and exercise which I can´t anymore.

17 Replies

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  • Hi vatnajokull, I'm sorry you feel so bad. It sounds like you were given a dose which is usually for people with Giant Cell Arteritis, or GCA, a related disease. Most people with only PMR are started on about 15, sometimes 20, because we should respond well to that dose if it's really PMR. I'm not surprised you don't feel well now after such a rapid taper. I'm sure the experts will be along to offer some advice about how you might do better with a different type of schedule and dose for PMR. There really isn't anything else that works. I can only give you my experience. I was also getting to the point where I found it hard to perform daily activities. Finally after over a year PMR was diagnosed and I was started on 15 mg. I was at that dose for about five weeks, then started to taper by 1 mg per week. When I got to 10 mg I found I had to slow down the taper and started what we call the Dead Slow Nearly Stop method. Over the past year I've managed to get down to a really low dose. It hasn't always been easy, but feeling pretty good lately and side effects I had earlier have gone.

    You may be able to play golf again some day, but in the meantime you can help keep up your fitness by walking. Some people like to swim as well, but swimming is not as good as walking and other weight bearing exercise for the bones.

  • Hello vatnajokull

    I'm so sorry to hear you feel so poorly & as HeronNS says that is a very high dose for PMR & I'm sure PMRpro will reply to you re this.

    I felt very unwell with PMR at the beginning, I too had barely any strength in my legs, could hardly get out of a chair & even looking at the stairs made me despair, I couldn't dress myself or dry my hair. It is the most miserable of conditions & I too am having problems again at the moment.

    I really think you need to see a Specialist and soon, was it your GP (Family Doctor) who diagnosed you & prescribed the very high dosage?

    Best Wishes & keep us updated as to how you are doing? 💐

    PS

    My eyes were affected when I was on high dose steroids for a flare. My optician made me some 'middle' distance specs as it was close to (but not reading) that was my issue, they were a great help!

  • @vatnajokull

    Hi, I am in the USA. I am 67 and although we are all experiencing things unique to ourselves I want you to know you should be well someday. I was misdiagnosed about 13 years ago and went into remission until this year in May. I was finally diagnosed this August. The pain was crippling and I have such sadness for losses I suffered this past year and a half. I know now the lesser pains I had were related and building up to this dreadful flare. Now 6 months later I can do a lot just not as long or as well but I am at 9 mg Prednisone and soon to drop 10 % . My hair is falling out and my mind is not as sharp but I didn't feel as sick today and believe it will burn out and I will see it coming the next time and it will never have to happen again. I wish you well too. It won't have to happen again.

  • Hi all, strange how PMR follows a pattern for us all isn't it? I had a bad fall in May 2015, multiple bruising all over my body as well as injuring my wrist, knee ankle and breaking two ribs, I thought I had healed quite ok after this but never got back to a total feeling of wellbeing. This feeling got worse and to add to it I started with severe neck, shoulders and arm pain a few months later and I started to really struggle with mobility and overwhelming exhaustion. I had numerous tests at the hospital but it took until Jan this year to be diagnosed with PMR. Steroids were started immediately but now nearly 12 months later my mobility is worse as osteo arthritis is now present in my knees, back and hips, the pain of the PMR and the OA merge together so I can't really tell if the PMR is improving. I am still on 15 mg Pred daily , i am still working it is a struggle but I need normality in my life! Lovely lady from Iceland I agree you were started on a mega dose of Pred so understand why you are feeling the way you are! This is a strange illness , good days bad days. I have now accepted my limitations and have had to change my life accordingly, I am 61 years old but never felt old until now! The support from my partner and wonderful son has been fantastic I don't think I would have coped with the last 18 months without them, my son is so positive and supportive. He always gets me to see the positive side of what's happening and helps me adjust to the changes. I wish you all the best and remember you are not alone on this journey, this site is full of like minded people who really know what you are going through. I have learned more about PMR through this site than from any of the numerous medical people I have seen. I wish you all the best you are a strong brave lady and we are all here for you xx

  • Hi all.

    Thanks for answering me. And yes I was treated for Gigant cell athritis in the beginnning. That was the main reason for such big dosage. I will be seeing my specilist soon and I´m going to tell him about this website. Have you been prescribed Alendronat to prevent you getting osteoporosis? I have and my specialist stopped that because I´ve got Osteo arthritis as well in my knees and my left jaw which is very bad and this medicin can cause decay in the jaws ( strange). Some weeks ago it was seen by Magnetic Resonance Imaging of my jaw that something is not ok so if you are taking this medicin be aware of this. I´ve got fibromyalgia as well but it´s like I don´t feel it so badly as before after getting PMR.

    Thanks for your support and I 'll let you know about how things are going.

    Best whishes.

  • So did you have a diagnosis of GCA or was this a preventative dose? I've heard of at least one other person with PMR who was given a high dose to prevent GCA, although she had no symptoms of GCA, and she also is having a very hard time tapering.

    There are a great many things we can do to help our bones and avoid any of the, to my mind dangerous, OP drugs. I'll private message you the little reading list I've accumulated over the past year or so.

    Make sure you get Vitamin D3 and Vitamin K2 as well as enough magnesium and calcium. Most other micronutrients will be available in a balanced diet. Weight bearing exercise, as simple as walking, helps keep the bones strong, and there are techniques for guarding the spine against compression fractures. You can also keep your sense of balance good through activities like tai chi and yoga, as falling is the single most important risk for fracture.

    It's possible that looking after your bones through diet and exercise will also help you feel better generally. I suspect that my trying to treat thinning bones the natural way has also contributed to my reasonably successful control of PMR.

  • My family doktor was almost sure that I had GCA beacause I had swelling in the temples and pain, and PMR too. But he did´t send me to a specialist until 5 months later. It is very good to know about alternatives in keeping my bones strong, I take magnesium, calcium and cod liver pills. Thank you for your advices and I fully belive that natural ways as you describe is very important for getting better from illnesses and prevent getting many of them.

  • Hi Heron NS. Had PMR since April. Started on 20 mgs had tapered to 11 in June with no problems. Then there was a GCA concern so GP put me up to 40 for a fortnight, Then down to 20 for 8 wks. A GP put me down to 17.5. Then saw rheumy who put me on 15 for a month and then lower to 12 for a month. So far on 15mg no problems. GCA symptoms only lasted a day - went went physio treated my neck. But I have had 3 spinal compression fractures in the last 3 months so I'm very interested about the techniques for guarding the spine against compression fractures you mention. Please could you say where I can find info about them. Thanks. Kay

  • I was able to attend a bones clinic at my local hospital. There were presentations by several experts, including a physiotherapist. She talked about simple things we can do. For example if you need to pick up something low down don't bend your back, instead move as though you are about to sit in a chair. Without stressing the knees this puts the weight into your legs instead of your spine and you can then pick up something small. I find this very useful when feeding my cats, for example. The usual advice - don't try to carry heavy things, and whatever you do lift and carry hold it close to your body. Place grocery bags on a chair rather than the floor or counter so you have to neither bend nor stretch to unpack the bags. That's what I remember off the top of my head. I also have for many years done exercises to strengthen the muscles which support the spine, and you'd need to get a program tailored to your needs from a physiotherapist. But there are some pretty good general exercises available on the internet, particularly the sites which urge natural rather than drug treatments of osteoporosis. If one is vulnerable, however, I would definitely recommend getting a professional to prescribe the right exercises for your particular condition. One thing I learned from my physiotherapist was that I had "bad tone" in my back muscles. This meant they were very tight, even spasmed. I was unaware of this. She has used a couple of techniques including "dry needling" - google it - to make the tone more relaxed and normal. She said that the muscles can get so tight they can cause fractures in vulnerable people. I found this an alarming bit of information so I guess I'll be getting those back muscles checked on a regular basis!

  • Those are good suggestions! Thank you very much.

  • Do I gather you have stopped taking prednisolone? And - as is to be expected - the symptoms of the PMR have come back?

    I'm afraid the bad news is that there isn't an alternative that works in PMR besides the various forms of corticosteroid: prednisolone, prednisone and methyl prednisolone. The DMARDs used in rheumatoid arthritis may help to reduce the amount of pred needed slightly but it isn't certain and they don't work on their own, only together with pred.

    However - the good news is that if it is PMR you absolutely don't need 50mg - and no wonder you felt so ill. The 50mg dose is for another related illness, giant cell arteritis, which can affect the optic nerve. Without the high dose there is a risk of blindness. The recommended starting dose for PMR is much lower, 15-20mg, and then you reduce to find the lowest dose that gives the same result as the starting dose. PMR is a chronic disorder: every morning a new batch of the inflammatory substances is shed in the body and a new episode of inflammation happens. You need just enough pred to deal with this new daily inflammation on an ongoing basis so they symptoms are at a level you can live with until the underlying cause of the symptoms we call PMR burns out and goes into remission. For 75% of patients this happens in between about 2 and 6 years. Then you will need no more pred.

    This is a link to a post on another forum which has a collection of links to reliable information about PMR.

    patient.info/forums/discuss...

    In it you will see a heading "Bristol paper". I suggest you show this paper to your doctor - it is written by a senior rheumatologist and a relatively young consultant and is aimed at non-specialists to help them care for their PMR patients better (it was presented at a meeting for general practitioners). If your GP won't listen - you really do need to see a specialist rheumatologist. Apart from anything else - PMR is just the symptoms of an underlying disorder and you need to be sure the others have been ruled out. Having started you on such a high dose the view is a bit clouded, lots of things respond to that sort of pred dose.

    If there is anything you do not understand or other questions - do come back and ask. Someone will have already experienced it and can tell you their experiences.

  • Thanks for your concern I´ve printed out and saved the Bristol paper.

  • Hi PMRpro.

    I want to ask some questions about the Bristol paper and more.

    As I understand it people should´nt be giving predn unless there is a medical proof for them having PMR or GCA . And that low dosis of pred cure the symtons of PMR and that if I take a low dose of predn and don´t feel better then the diagnose is wrong.

    One more thing I wan´t to know is this: is predn curing symtoms of diseaces but not the disease it self. The reason for askings all this is that I had pred prescribed in low dosins before I had this big one and already then I felt agitated, irritable, had bad concentration, suicidal thougts almost every day and had hard times to cope with my life, all this on low doses of pred. This affected my familylife a lot.

  • There is no medical proof for a diagnosis of PMR - it is a purely clinical diagnosis: on the basis of signs and symptoms. Not even the blood markers of ESR and CRP are conclusive as about 1 in 5 patients have levels that remain within the normal range. GCA is similar in that there are no blood tests that are definitive. However, if they do a temporal artery biopsy and it is positive - that is 100% proof that it is GCA. Unfortunately though, if it is negative, that does not mean you don't have GCA, it only means that they did not see the giant cells they are looking for in the histology laboratory. If the symptoms are sufficiently strong they doctors often treat for GCA anyway - the risk of blindness in not doing so is too great.

    Pred doesn't cure PMR - PMR and GCA are the result of an underlying autoimmune disorder which makes your immune system unable to recognise your body as "self" so it turns on the body tissues and attacks them as if they were invading cells, like it does with bacteria and viruses. This causes cell damage, inflammation and swelling and, as a result, pain and stiffness. The pred relieves the inflammation - so less swelling and pain. that is all it does, it doesn't do anything to the real illness, there is nothing to manage that directly.

    Usually the symptoms of PMR will respond to a starting dose of 15-20mg in the vast majority of patients. If there is a dramatic response to that sort of dose then most doctors would accept that PMR is the most likely diagnosis - but it isn't certain and it is sometimes disputed nowadays. But there is no other better test. If your response is small, it makes sense to try a bit more, up to 25mg, but not any higher - other things will respond to high doses. They should be kept for when the doctor is confident that the symptoms are of GCA. If you give the patient too little pred then it may not be enough to reduce the inflammation enough to make a difference. On the other hand, a study in Italy showed that 75% of patients would respond well to 12.5mg/day within a month - the lower the dose, the longer it will take. People who are small and light with less body fat will respond quicker than a large person. But most patients are impatient - they want quick relief from their pain and stiffness.

    There are people who have had a good result with 10mg pred - but that is unusual and not recommended. You need enough to make a difference and it is felt to be better to start with a dose that will work for almost everybody and then work down rather than the other way round.

    Does that answer your question? Is it clear? Do say if it isn't.

  • Thank you for very informative answear. If I come to think about something else to ask I will do so. I consider my self very lucy to find this site, none like this in Iceland.

  • Aren't many anywhere in the rest of the world either! We have 3 different ones in the UK.

  • Unfortunately, there is no other treatment for PMR than taking steroids - the answer is to find the right level of Pred to mask the pain

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