I started with pains shortly after changing my anti-coagulant from Warfarin to Rivaroxaban; pure coincidence or did the combination of drugs I take trigger PM? Who knows.
I was put on 20mg Prednisolone and relief came after about a day. I occasionally get upper arm pain, but not the intensity it was before I was diagnosed with PMR. I don't exercise enough and have some leg aches but again nothing like before medication. I'm currently on 10mg prednisolone a day. Next week I'll go down to 7.5mg. My !st ESR test = 130, the second after 10days of medication was 83, then a month later 29, a month after that 26.
The medication is working, the ESR is coming down. I've read that PMR normally lasts between 9 months and 3 years. How will I know when it's left my body? I know I have to keep taking the pred, and Calceos, and I'm having some bone density tests soon, but if the tablets work how do you know when it's gone? I've only had it for 5 months so far.
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Thomas45
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Well - I've certainly never heard the 9 month figure! And I know plenty of people who have had it an awful lot longer than 3 years!
You have got to a stage (10mg) that causes many people a lot of trouble to get below. The top experts have for years said that the reduction rate shouldn't be more than 10% of your current dose and that means at 10mg a reduction of not more than 1mg at a time is recommended. The rheumatology group in Bristol who have done work on reduction rates under John Kirwan keep their patients on 10mg for a year before continuing the reduction and in so doing reduce the rate of flares from 6 out of 10 to 2 out of 10. Having had repeated flares trying to get below 9mg it is a concept that appeals to me greatly believe me!
You find out if the underlying autoimmune disorder that causes PMR has gone into remission by reducing the dose of pred and seeing if it doesn't come back - there is no other way just as there is no other treatment besides pred. As you reduce there are two possibilities of pain returning: the PMR returns because the dose is too low to control it or you develop pain that is very similar as a result of removing the pred too fast (similar to many other drugs).
You might be fine at 10mg and not at 7.5mg - so how do you know which is which? Pain due to PMR flaring up tends to start after a few days or even longer and gets worse with time. Pain due to pred withdrawal starts quickly and may improve over the next couple of weeks. The trouble is, if you are dropping 2.5mg at a time you may have got to a stage where you would be fine on 8mg but not 7.5mg - yes, 1/2mg can sometimes make that much difference. Many of us have found that reducing 1mg at a time or sometimes even less makes it much easier - and you are less likely to miss the dose you are seeking, the minimum needed to control the symptoms. I go down 1/2mg at a time and have got under 9mg for the first time in over 4 years. I've had PMR for 9 years altogether, 5 years undiagnosed.
Once you are down to 5mg you are looking at 1/2mg at a time, because with each reduction you increase the percentage drop if you stay at 1mg at a time.
It seems we are all very different. I know a woman who was diagnosed immediately after the symptoms began and started her preds. She then walked and walked every day, come rain and shine and stuck to a healthy, anti-inflammatory diet; she gradually reduced the pred over 6 months. After this 6 months she went into remission and a year later is still free from symptoms. This is a very unusual case I admit but it just illustrates how different we all are and while many have it for many years some are lucky and get over it relatively quickly. I agree so much with PMRpro though that SLOW reduction is the key. I was diagnosed less than 2 weeks ago, am on 20 mg pred still and the pain took days to go away (still aches first thing in the morning) so again that's different to most, who experience relief more quickly. Good luck. I hope you are one of the lucky ones!
If there isn't a dramatic response to 15/20mg pred (70% improvement within 24-48 hours) there has to be a question as to whether what you have is really PMR. The pred trial is the final is it/isn't it test and works for the vast majority of patients - if you "fail" the group in Bristol is of the opinion that other options need to be considered.
As for the lady and 6 months - there are some doctors who add a criterion of "pain and stiffness for 3 months or more": there are things that look like PMR but are caused by something else and they often resolve if left alone. It is one of the problems with there not being a conclusive test for it - it is a matter of opinion. And any doctor who tells you "your blood tests show you have PMR" doesn't know what they are talking about. ESR and CRP are both very non-specific and are only one of the pieces of the jigsaw.
I agree, Badgergirl. I would like to know more about this woman.
I have GCA and the macrophages are greatly enlarged, which causes swelling in the arteries, which becomes very dangerous. I am thinking that PMR is similar.
I am getting a sense and I hope I am wrong, that I may be dealing with this for the rest of my life. I do not like what prednisone does to my or anyone' s body. It eventually causes the adrenals to shut down. If this happens and can't be reversed, the treatment is a low dosage of prednisone to keep cortisol in your body, (so you continue living and your organs don't shut down from a lack of cortisol) but from an artificial source : the predinsone that you take.
I have gotten the medrol down to 5mgs's per day. Sometimes the fatigue is overwhelming and I realize that probably the adrenals are not producing cortisol. I take ginseng which stimulate the adrenals to work and I slowly gain more energy.
There have been days, when waiting for a prescription to be refilled, or I can't get to the pharmacy, when I don't take medrol. When I feel fatigued, I take the ginseng and slowly feel less fatigued.
I have spoken with doctors of Chinese medicine and some from China. One said that in China, when this disease is diagnosed and they don't have access to medrol, they use high doses of ginseng to treat this and it seems to work. I found that very encouraging.
As the disease goes into remission, the ginseng does stimulate the adrenals to produce cortisol on their own, without the "push" of prednisone present (suppressing them). This seems to make more sense to me, as I look at this, (the Chinese method) as possibly being a part of my life for at least a few more years.
Everyone has to look at their own situation and make their own choices. No recommendations, here, but would say look at everything. It is your body and you have to live with it and this disease for awhile.
When I have a flare, I take the high doses of medrol as the doctor says to do. Often I have insisted that I take 20 mgs instead of 60mgs. I know that if I take 60 mgs for four days or so, I will have great fatigue as it is lowered. The 20 usually deals with the enlarged macrophages, which is GCA and I can deal with the lowered amount of fatigue, after the flare.
I am also using the anti inflammatory diet. I am very interested in this woman who is off the prednisone, walking, and using the diet. The diet is very positive for this, I believe.
I went off it last week for a day, ate bread and a pastry, at a holiday lunch. I felt awful, later and the next day.
Want to keep this disease as much in remission as possible, so will stick to wonderful vegetables, fish and sweet potatoes and other substitutes for bread. I have a little bit of cheese about once a week, and no more dairy. I take calcium and vit. D. supplements and fish oil supplements.
Worrying that the answer to the question posed, is that we may be dealing with it for awhile. Think that the woman who walks, as you have explained, Badgergirl, may have one of the best answers. Thank you.
"people with autoimmune diseases such as rheumatoid arthritis or Crohn’s disease should not take Siberian ginseng.
Source: Siberian ginseng | University of Maryland Medical Center "
they also say:
"Corticosteroids (such as prednisone): Siberian ginseng may interact with steroids."
I've also seen warnings for Chinese use of ginseng but can't find them at the moment.
Pred doesn't simply cause the adrenals to "shut down" - it's a bit like the central heating thermostat: when enough of a corticosteroid is present in the blood the adrenals know they don't need to make any more, just like when the room temperature is right, the central heating doesn't run. A small number of people suffer from a deterioration in their adrenal function as they get older - it isn't just the pred that leads to it.
My understanding from nutritionists and a doctor of Chinese medicine from China is that that prednisone is out of the body in 24 hours, at most 48 hours, unless you have had a large dose, 20mgs to 120mgs. When it is out, the use of ginseng to help the adrenals work, is safe, it doesn't interact with the prednisone, because the prednisone is no longer present in the blood.
The adrenals shutting down is very dangerous. And often they are not "asleep". They stop working, they stop producing cortisol. Sometimes they restart, but not always. I have read some horror stories from people who have stayed on prednisone for several years at their doctor's suggestion.
Cushing's disease can present and then Addison's disease. There are patients in the U.S. who have stayed on medium to low doses of prednisone for over a year and then had to deal with Cushing's syndrome, and sometimes it leads to Addison's. In Addison's, fat has dedistributed to often form a hump on the back, jowls in the face, thin arms and legs, and usually heaviness in the central body. Fatigue is overwhelming, because the adrenals are not functioning.
The current treatment for this serious disease is low dosages of prednisone for the rest of the patient's life. The adrenals are no longer working or are functioning at such a low level, that they do not produce enough cortisol for the healthy functioning of the major organs. Without cortisol they, the organs, the kidneys, the spleen, the heart, will begin to shut down. The patient can die from these organs not functioning. The GCA PMR "cure" has caused this. At present, the doctors deal with this by using extrenal cortisol, prednisone or another form of cortisone. This means that for the rest of their life, these patients will be on cortisone and have to suffer with the side effects.
There is actually very little actual ongoing research on GCA or PMR, the doctors prescribe the prednisone and they feel they have succeeded in treating this serious illness. And we are left to our own resources. It has happened to many. In China, where many cures happen without the drugs we rely on in the U.S. and western countries, they use herbs with much better, less dangerous long term effects.
Why use artificial cortisone to stimulate your adrenals, when you can use an herbal remedy which will help them to work as they are intended to work without artificial cortisone? Once the initial flare or incident has occurred and is over. This makes more sense.
In the U.S. there are some trials for remedies instead of cortisone or prednisone because of its dangerous side effects. Methatextrate is one with aspirin and no prednisone or no aspirin and very much lowered dosages of prednisone. There are biological which inhibit the growth of killer t cells which really cause much of the damage in GCA. I don't think you take prednisone at all with these biologics. These need to be looked into because they attack the cause of the GCA not just the symptoms.
In the U.S. health can be more like an industry. i.e. -- You are in menopause, .... "here have some premarin," your doctor offers, which actually uses horse urine for the hormone replacement. I am not a horse. I remember taking it and feeling, whoa very, very different. My boyfriend noticed it. I stopped taking it. I later learned that it could cause cancer. I am glad I switched to the plant based oil of evening primrose and black cohosh, something the doctors poo poohed, until the cancer statistics came out. I made it through menopause not using horse urine, but evening primrose, no cancer. Doctors when they were prescribing premarin were "solving the problem", "go home, take two aspirins and call me in the morning," That's ok. Primrose has it over horse urine. Thanks.
The prednisone we are taking as a "miracle cure" as premarin was, is actual prohibited by sports teams. It is illegal to take, partially because of the unusual results it makes in the body. And no one really know what these mean or if we should be taking this stuff on a regular basis. Maybe once in awhile. If the major sports teams are prohibiting it, I am not thrilled when my doctor, says it is safe for me except for the Cushing's syndrome, rashes, staying up nights, red cheeks, etc., then extreme fatigue, as if I am recovering from cancer. If it isn't safe for major athlete's -- -- I am researching and looking. Doctor's are not gods and they do not have perfect knowledge and sometimes they have stopped "looking for knowledge".
Thank you, doctor, as you drive off in your expensive car to your expensive home. And you don't take my calls in the morning. Your secretary does and sometimes you return my calls and sometimes you don't. You are a busy very person, making a three figure salary. I have a severe illness and I don't want more of them, Cushing's Addison's, so that your life is easier and you can concentrate on putting your swimming pool in and where you will be sending your children to college. Not that I don't want you to have a good life, but I want one, too.
I also understand that in China, they actually use high doses of ginseng to treat GCA with good results. The Chinese have been using herbal remedies to treat illnesses for thousands of years. Why shouldn't we learn and include their knowledge also?
I have switched to a rheumatologist who trained and worked in Russian and then emigrated here about ten years ago. She is expert in this and is willing to work with this method. She is an expert in her field and she does not have a seven bedroom home with 5 bathrooms. She has a small office in NYC and she runs it as a clinic. I have gotten the most understanding there and very good advice. She says I have Reynaud's in my hands. None of the doctors at the high profile hospitals or practices, I was seeing for the initial diagnosis of GCA, even noticed or looked at my hands. She is treating the Reynauds. We have to open our eyes. These are not miracle healers and there is no Santa Clause. These are very serious illnesses. I don't want to be tethered to a cortisone for the rest of my life if I can help it, because it makes my doctor's life easier. I am careful.
The prednisone is out of our blood in at the very most 48 hours. When there is fatigue, ginseng helps gently for the adrenals to work again. We have to get them working. They are not always "asleep". The body doesn't work like that. They may well be no longer working. We are then in trouble. Trying to stay out of trouble, alive and functioning as best as possible, is what we need to do.
I am well aware of what research is going on for PMR and some of your facts are wrong.
Apart from any other consideration - for the majority of us outside the USA our doctors do NOT make large amounts of money out of us, that is one of the advantages of our medical systems, whatever their downsides. They are not an industry. If your doctor is making money out of what they give you - what are your other suppliers doing? I don't imagine for a moment that your nutritionist provides their services free. And I don't know about the USA but in the UK anyone can set themselves up as a "nutritionist" and charge for advice - I don't imagine it is any different in the USA judging by some of the celebrity nutritionists who have appeared on UK TV in recent years. Most of them have an agenda: to sell their products to aid your "healthy" lifestyle - at inflated prices.
Prednisolone is excreted within a few hours - but you are taking it every day so it is back the next day and the effects that lead to interactions can remain in the body for a long time. Cushings is the "disease with the hump" and is due to the excess amounts of steroid leading to many patients putting on weight which goes to specific places (midriff and back of the neck in particular) under the action of pred. We do not develop "Cushing's disease" as such, we develop Cushingoid syndrome - there is not a lot wrong with the adrenal glands but the dose of pred we are on provides the excess. Addison's is the opposite, occurring when the adrenals produce too little cortisol which isn't replaced. Yes. in some patients the adrenals do not start working after they have been weaned off pred - but they are a small minority and it is possible they had adrenal problems anyway.
The steroid drugs athletes take are body-building steroids, anabolic steroids - totally different and dangerous in a different way. Artificial cortisone does not "stimulate" the adrenals, quite the opposite. Methotrexate is not a biological drug and has been the subject of a few studies which have pretty much shown it doesn't work in GCA/PMR. There have been other small trials, one using leflunomide which is used in RA which looks promising and more work needs to be done. Anti-TNF agents have been trialed - and one was stopped because they caused more harm than good. Biologicals are wonder drugs - but they can be extremely dangerous too and cannot be used in some groups of patients. That's why you have to have testing before you can even try them in RA.
No there is no cure at present for PMR, all that can be done is manage the symptoms until the underlying autoimmune disease goes into remission. The only option for that at present is pred or wait - which actually is what our grandparents had to do. Our expectations of a standard of living are higher - whether that is right or wrong. If you leave the body in a constant state of inflammation you are at a higher risk of heart and arterial disease and cancer so the use of pred is probably protective there. If you do not treat PMR your are at a higher risk of developing GCA - and then you must use high dose pred as the only reliable option to prevent blindness.
I realise you find a benefit from your therapies - I have only replied here because the other side must also be presented and with correct facts.
I am glad that you are aware of the research for PMR and I am glad that there is research going on. Unfortunately, it seems there are not many studies going on for GCA. I think there is one at Hospital for Special Surgery, NYC, which is trying one of the biologics which is meant to stop the growth of the killer t cells at the cellular level, which is one of the problems with GCA, and the fact that due to the giant macrophages, the cell walls actually burst.
And what you have said, is true. There are problems with the biologics. I believe they are working on the problems. I am going to try to get into the trials for the biologics, because I understand, that, in the U.S., that is one of the few ways you can actually have them prescribed.
As a paralegal, I have worked quite a bit in med mal, (and I do like and work with doctors, not trying to always "sue" them), so I have medical knowledge, studies and understanding. One thing I have learned, and not everyone has to do this, but the patient really needs to be "involved" (If there is cognition) and know, question and hopefully be part of the decision making process concerning his or her own health. Possibly because America is still such a young country, there used to be this idea that anything the doctors said, was -- "it". We sort of revered them. I don't think we can afford to do it any longer.
If the form of medicine practiced in England (and my mother's and my, relatives are from England) is not an industry, that is very good and good for people with health problems, it would seem. It seems a step forward. I am glad for you.
The nurtritionists I see are with a women's health initiative. I pay them nothing, but the health initiative pays them a salary, which is much, much less than if they were in "private" practice. The neurologist I saw a few times who highly recommends the anti inflammatory diet was "private", well paid (I have medicare and medicaid, so, at this time, I do not pay him, the state does) and was also a researcher. He gave me free vitamin samples and said the research he was doing was showing that wheat, gluten, milk and some other foods were causing inflammation in his research subjects. He took no payment for giving me the anti-inflammatory diet he and his fellow researchers had put together. He was one of the doctors who helped me finally get the true correct diagnosis of GCA and probably helped to save my eyesight. The hospital that "missed it", for 5 long months, was Mount Sinai in Manhattan, a world renown hospital. Not good.
I understand that methetextrate alone will not deal with the GCA or PMR, but used in combination with medrol, the medrol can be reduced and the inflammation stays down, which is the result desired. It is called a "steroid sparing agent" and it was one of the first drugs given to me, when I began to react to the high dosages of prednisone. I still take it with folic acid and I can keep the medrol down. Methetextrate has side effects, but it does not to my knowledge negatively affect the adrenals as medrol.
The Cushinoid syndrome or true Cushing's is no little thing. I have heard horror stories in the U.S. from people whose adrenals did not "restart" and for the rest of their lives they had to deal with medrol or prednisone to have some cortisol in their system. I have had it, the Cushinoid, and it is an incredible fatigue.
Yes the prednisone is excreted in a few hours and I appreciate and applaud the fact that you are a physiologist. First of all, I am giving my information, how I dealt with it, what happened with me. What I am saying/suggesting (I have no medical degree and this is my information only) is to begin to use the ginseng when after 24 or 48 hours when the medrol is out of the body. As the adrenals seem to restart (the fatigue is not as bad) do this maybe for a few days. if a flare or any of the dangerous symptoms recur, stop the ginseng, wait for it -- to be out of the system possibly a day and then use the medrol.
As you have said, there is at this time no "cure" for the GCA PMR nor even a good "agent" that deals with the cause of the inflammation. The prednisone treats the symptoms. It treats them well yes, but we have had other times in history when a drug treated the symptoms and people got very sick in other ways. I hate to use this example, but at this time I can't think of another -- I don't know if this happened in England, but we had thyialomide (spelling ?) given to pregnant mothers for morning sickness. It treated the symptoms, but many gave birth, very unfortunately to babies with deformities. Prednisone is wonderful, but we need our adrenals. If the gentler Chinese ginseng ups the cortisol,in the body naturally, through the adrenals themselves -- after the initial inflammation is down, due to the prednisone, trying the ginseng may give better long term, quality of life, results, for now, until we have something which deals with the cause of GCA, PMR. That is my point. "Quality of life" is a somewhat relatively new term that our doctors are trying to include, which we appreciate.
Apparently Chinese doctors who have been practicing for years, in a very old culture do use ginseng for this ailment, not together with prednisone. Their claim is that people with GCA are treated with ginseng when the doctors do not have access to prednisone. I am quite obviously not giving medical advice, I am sharing what I have learned. My nutritionist insisted I speak with a doctor of Chinese medicine before she agreed to this way of including herbals. I found a doctor of Chinese medicine in Flushing, NY and I found an interpreter. We spoke for an hour. I asked him three times if they used ginseng in China for GCA, three times he said, yes, they did. He said, through the interpreter, that often they had no access to drugs such as prednisone. I asked him if it dealt with the GCA, helped it. He said yes. We, in this country, have very little access to what is actually happening in China. He was newly over here. He was treating Chinese people for their illnesses when I spoke with him. I took my information back to my nutritionist at IWD, in New York, the women's group I am part of. She said "let's try it". I have. I feel better, I still have my sight and much, much less fatigue. I believe my adrenals are working.
My mother lived for five years with this disease. She was 70 when diagnosed and at 75 she died from a heart attack. In the U.S. at this time, the morbidity of GCA is 5 years. Because I am relatively young, 62 for this disease, they say mine may well be longer. I wonder if my mother, who never had heart problems before taking the prednisone and she was a stickler and stayed on the prednisone, exactly as they said, until the day she unfortunately passed away. But did she pass away from a heart attack, due to the prednisone, which can happen.
If ginseng can help me avoid this and prolong my life, I will try it. I am not urging anyone to do this, but I have found in the U.S. there are very few with GCA and many doctors do not know, what they are treating. They refer to the rheumatologists, who again, because mostly very old people who are dying from many things, unfortunately, are somewhat cavalier about GCA. "Just take the prednisone and you'll be fine" is what I have gotten.
Until I found this wonderful doctor from Russia who does not treat like that and has treated many cases of GCA. She knows what it is, what to look for and listens. She is fine to "try" this with the ginseng. But always if there is a flare, off the ginseng and back to the medrol. fine with me. I want to live. And I would urge anyone trying to this to always keep medrol with them, I do. And if I get sick on a job or traveling on the subway or through Grand Central, I will get a cup of decaffeinated tea and take one and when I get home, I call one of the four good doctors I am now seeing.
Sorry about the rant about U.S. doctors, but having worked in NYC it is unfortunately true. They are not necessarily "bad" people, but I believe socialized medicine is much more civilized and makes much more sense. can not tell you how many times I suffered through migraines with over the counter tylenol because I could not afford the expensive migraine medicines. I can now. But I clearly would much rather not have GCA. And I support "Obama Care". I don't know if you have picked up on the pretty terrible political battles over what the Repubicans have termed Obama's version of socialized medicine, which is what it is. It has passed both houses, but putting into action has not actually happened and may not.
Thank you for your input.
Wish all success and survival with these rare diseases.
If your mother had GCA years ago then it is likely it was the GCA that contributed to her death since it causes considerable cardiovascular problems. You are causing problems for yourself if you are yoyo-ing your medrol dose going on and off it.
And if you have worked in paralegal circles you should realise that a primary problem with doing research using other drugs for GCA is that it is known that, with all its problems, pred does prevent blindness when used properly in GCA. There is no way you can do a double blinded trial - the patients given the "other" drug would be at so much risk of going blind that it would be non-ethical and highly unlikely that permission would be granted.
If you find these things help you that is fine - but it is not something that I would wish to play about with. I have never been particularly impressed by the US medical system that so many claim is the "best in the world". Your comments make me even less enthusiastic.
Agree, PMRpro. I am even less enthusiastic about the level of care in the US now than I was before, which wasn't much.
As someone who is steroid dependent it would seem that in America I would be considered to be on borrowed time. I don't look it, and ......er......I don't feel like it either. Neither am I treated as such by the various consultants that I see.
I have seen Chinese doctors when I was desperate at the beginning of all this and the three sessions I had with them, due to a lack of suitable translators, could have been filmed as a comedy. I finally decided to make some enquiries and discovered that they hadn't a clue what I was talking about and were treating me for a stomach problem. A lot of money wasted.
I do not claim to have a medical degree or any other kind, but due to my several careers I have gained a considerable amount of medical knowledge which would not be available to the ordinary lay person. I would suspect that my knowledge places me on a par with you, Whittlesey, or possibly higher. And I would not play about with things not completely understood and which may be detrimental. Incidentally, my GP or primary care doctor is from Germany where they have a much greater incidence of both PMR and GCA and I have complete trust in her.
You may be right about the "borrowed time" situation in the U.S. I felt that way, too and that's not good.
unless you can get one of the better doctors. This is the third rheumatologist I have seen. The first was just a few years younger than I am and became so noncommital about it, that I wanted to say, "hey I don't feel good! I have a serious illness! " I would call at night with one of these headaches, unsure what to take or what to do, and she would not return my call, sometimes until several days later. And these doctors have several secretaries and are not seriously overburdened. I asked to be tested for diabetes, which Prednisone creates a risk for and I had some of the symptoms. She tested me in the late afternoon and said my blood test was fine and I didn't have it. I went to my women's initiative and asked for the same test. They took both urine and blood during the entire day. She said I was borderline and hopefully by lowering the prednisone and restricting sugar could avoid it.
After being hospitalized and being diagnosed with dissecting arteries, cartoid and vertebral, I changed to another rheumatologist. He was in his 60's nice and "don't worry" joking kind of guy. He wanted to increase the dosage of medrol to 20 perday for a month or so and "see". He treated many very old people who had many illnesses, GCA was one of them. I was "lucky" he said.
Well, not feeling all that "lucky" I sought another rheumatologist. I didn't want to go back up to 20 mgs' then suffer the fatigue when it went down after they had "seen".
I found this woman, I don't remember how. Her office is in a pricey part of Manhattan and she has patients from all levels, including feminists and people making good salaries, and immigrants. She has three offices: Manhattan, Queens and Brooklyn. I didn't have to explain GCA to her, my problems with medrol, any of it. She did a thorough examination, said I also have Reynaud's in my hands (?). She wanted to start with intramusucular methatextrate as a steroid sparing agent and keep the medrol way down. We didn't have to "see" she said. -- no 20 mgs. necessary. I discussed the ginseng and she said as the medrol is lowered, we can try this. She practiced in Russia for many years, then came here, when Russia "allowed" people with Jewish heritages to leave if they wanted to. She did and came with her daughter who is a few years younger than me and her husband. My sense is (from the long years in legal, etc.) is that she is a good doctor. No nonsense, but she wants people to get over these diseases.
With the intramuscular methetextrate and very lowered medrol, anti inflammatory diet, I feel much better than I have since being diagnosed. will keep with this method. If I can get the medrol lowered to maybe 2mgs, then I will use the ginseng.
Understand about the Chinese doctors. I have been careful. I will be seeing one, Monday, who is a few blocks away. Will go over the information with him, as I did in Flushing, NY. The woman who greets you as you go in, speaks English, very well, so I may get more information. Much of these are herbs, they have used as medicines for centuries. I don't think they should be discounted.
I obviously will not substitute ginseng for prednisone should there be a flare.
My mother's death raised some questions, because she had never had heart problems. She apparently died of a heart attack and it was the first time she had a problem with her heart. This was after 5 years of taking prednisone. My brother and I let it be. She was 75 and had had some realtively good years after the GCA was diagnosed and the prednisone was lowered to 4mg per day. That question remains open.
As to "trials" yes I am in agreement with you. They might be difficult. The medical community's attention to ethics in experimentation, is admirable in this decade. Unfortunately that wasn't the case in the U.S. in the '40's '50's. We experimented on syphillis by letting poor black men in the south suffer with it, without treating it when the treatment was available. Those were our 'double blind' trials. Barbaric. We have other horror stories. In this decade, I understand there are protocols, which conform to the Nuremberg Code, now, an accepted norm of practice, which is admirable.
However, there have been many findings on herbals doing what drugs do, but without the debilitating and possibly lethal side effects. Premarin/oil of evening primrose (I understand there are also some biologics that are being used). Statins for cholesterol/fish oil. There has been very little study on GCA. Prednisone is a cortisteroid with very strong and negative side effects. If, after the initial treatment with prednisone and blindness averted, the inflammation, down, an herbal such as ginseng has a similar effect on the body, as low dosages of prednisone, but without the negative harmful side effects, why shouldn't it be tried?
Otherwise one is confined to a lifetime of prednisone -- used to be a lifetime of premarin ? no longer on the premarin. If it doesn't need to be -- I believe that is where some of the work needs to be done. I understand that a double blind study might not be able to be done. Unless possibly it was tried with PMR, which while serious, will not result in blindness. If it works with PMR symptoms, it may well do the same with GCA, which is similar. I am not a researcher and of course they would have to work with these studies.
In so many other medical fields, including stem cell replacement and research, we have made the living condition, close to that which it was intended to be. Why should GCA and PMR be different?
One of our medical goals in this century seems to be -- less dependence on strong drugs which have serious lasting side effects. Ginseng has been used for centuries in China to treat GCA with good results, they say. It may be of benefit, here. ?
I'm willing to try, with always a backup of medrol with me and my cell phone to call my doctor if any of the alarming side effects happen.
Thanks for your input. Understand your concern.
Medicine isn't that bad here, but if you don't know what you have, sometimes it is more difficult than it should be.
Thanks PMR pro. I did not finish reading the above post because it scared the hell out of me.
I have been on prednisone up and down from 50 mgs down to twenty for years ...I get below 20 down to 10 crash and burn then back to 20. I am at present at 18mgs and because my labs are off my doc wants me to stay here until more blood tests next month.
Yes I have developed the bumps on either side of my neck on top of my shoulders but all the other treatment like methotrexate almost killed me. I have never felt so ill in all my life.
Thanks for always posting facts and not just your opinion.
As to the poster I would like to say when you start getting the bad side effects it is scary enough. If I tried ginseng which I have done prior to GCA and PMR it would not be beneficial to me as when healthy it caused me issues.
Each of us is different and our paths are not always identical. I want to know about my illness but only enough to get me by.
HI...love your writings. Nick here,, hello from Toronto. I see you have Reynauds, my hands are constantly cold and I have the same- I have been in Pred for 2 years, I have pain like PMR but still not sure if its PMR. So is Reynauds related and can you tell me good supplements for it?
Walking is generally considered to be the best exercise for a PMR diagnosis in the early stages - it can be customised to fit everyone. At various times it's been a struggle walking for 10 minutes so you do need to persevere. Even after all these years (12 diagnosed, at least 2 undiagnosed and I am being cautious here) and having picked up a laundry list of other goodies along the way I still love to walk although I still can't keep going for more than a few minutes.
When I was diagnosed there was so little information out there about causes and consequences, possibilities and probabilities that I think we steered through it all by the stars alone. Anti-inflammatory foods/diets/regimens had not been invented and even if they had I don't think I would have taken the plunge into uncharted seas.
If you make good use of the therapies available now it will not be such a rough ride for you, but above all else, don't let it frighten you. If you once get frightened about PMR or GCA or Prednisolone you will have a harder journey.
I agree with most of your points Polkadotcom. As the prednisolone dosages were being lowered and I began suffering a lot of fatigue and my doctor at the time, said I seemed to be suffering from prednisone induced Cushing's syndrome. I researched it. We have a wonderful midwestern doctor who publishes specifically for women and her advice seemed the best on Cushing's. And it was what you have said, "yes, walk as you can - exercise as you can." If you get tired or fatigued, stop. rest. rest for as long as you want or need to. Try to change your diet to include foods that will stimulate your adrenals to work.
I have followed this advice and it has been the advice that works. Cushing's is nothing to fool around with. The feeling seems similar to those who are using chemo and radiation for cancer, you are exhausted from no external reason. If you honor your feelings and understand your illness as Christine Northrup suggests (she is the midwestern doctor), you can slowly overcome, deal with this and your adrenals will again begin working. The anti inflammatory diet, hopefully keeps the GCA from happening or results in less "flares" so your life is better. The GCA may be for life. So we deal with it.
This idea that the adrenals are like an electrical heater with a thermostat is not how the adrenals operate. A better analogy is like a nerve that is not working. Medicines can make it feel better, but it will not again, be the nerve it was. You have lost its function. And that is the reality with Cushing's. And it doesn't have to be. go very easy on the prednisone and slowly cut it down. And then help your adrenals work again. There is no electrical thermostat in the body, that at a certain temperature begins working again. That is an elecrical aparatus and our bodies are not that. They are very different. Believe we should survive this in the best shape we can, with as much working as possible.
Thanks for your post. This seems very much in line with Christine Northrup's work and suggestions.
I am well aware the body is not an electrical appliance - I do have a degree in physiology for my sins! It was an analogy to illustrate how the presence of pred in the body suppresses more being produced - just like the thermostat perceives there is plenty of warmth and you don't need more. The body doesn't care whether the corticosteroid it senses was naturally made in house or bought in - whether it is cortisol or pred. The effect is much the same and the adrenals can go back to normal once you stop taking pred - but they do take some time to recover. The adrenals also work less well as you age - and taking pred does not alter that fact. Most of us develop PMR in our 50s or older so by the time we are weaned off pred we would probably be experiencing some lack of function anyway and there is some evidence that many people with such diseases have some adrenal under-function.
I have no idea what your doctors in the US do - but everywhere I have come across treatment of PMR the idea is to do just what you say: you start with the lowest dose that works for the majority of patients (15-20mg) and reduce that dose steadily to find the lowest dose that works. For the vast majority that is under 8mg/day - or less than their body would produce naturally and the side-effects are far less.
Of course we could say "pred is too dangerous, I won't take it at all" - and remain in our rocking chairs, in pain and unable to do anything, at risk of even worse illness. I do know about that - for 5 years I managed mild PMR with no medication before it went mad and I couldn't get out of bed and spent a lot of time sitting - because I couldn't stand or walk. Six hours after taking 15mg of pred I was back to normal - and after a rocky 5 years I am down to 6mg, have been Cushingoid and am no longer so having lost 13kg in weight whilst on pred and feel great.
Oh yes, I forgot before - if you have fatigue it is more likely to be the underlying autoimmune disease than the pred, ask anyone with an autoimmune disease. When I was Cushingoid I didn't suffer with fatigue as much as I had on no pred.
Don't believe everything you find on websites on the internet.
I have read your post. And yes, you have made one of your points, well. We are all different and this hits us differently. I am sorry for what you experienced with PMR. truly. And what you experienced sounds terrible and very difficult. I understand what you are saying about you handled it.
Mine is almost mirror image -- opposite. I was having terrific headaches, some vision problems and fatigue. And I kept "dealing with it" migraine medicine, which helped a little tea, coffee and "pick me ups". And I was somewhat dealing with it. doing per diem work and working on a non profit we have formed, for no pay for myself.
But then at night -- after "dealing with it" I was getting horrible headaches, sick to my stomache, etc. One night I was talking to a friend and he said, I wasn't making much sense. I said, "really" because we were talking about one of our issues. I got pretty upset (stroke ?) and called the EMS. They came and took me to Mt. Sinai hospital where my doctors were. After about 18 hours in the ER - a neurologist took my history. When I told her my mother had GCA she seemed interested, because they couldn't figure out the nature of the headache, loss of some sensation on my left side. The MRI had sowed no stroke and no brain injury or problems. She admitted me. I believe she wanted to do a biopsy for GCA. I was showing a high c reactive protein, but low sed rate. In the room, I asked for some cortisteroid for intense headache, which I thought was a migraine, because these had helped before. He gave me one. The neurologist then came in and said she was sending me home, because the cortisteroid would prevent a true test for GCA.
The headache clinic at Mt. Sinai refused to test for GCA. It was 5 months later that I was tested with a positive reaction, the biopsy for GCA. Almost from the beginning I had bad reactions to the prednisone. I finally settled with the medrol, nexium and benadryl. I had a flare and one of my other doctors told me to go to another hospital not Mt Sinai. I went to St Lukes. They gave me, every 6 hours 120 mgs of prednisone, After two days of this I got very sick, to my stomache, my cheeks, chest were red. felt horrible. I said I would take one of those shots a day, not every six hours. They finally agreed and two days later released me. I went from 80 mgs a day to 20 mgs a day, at home, in about a month and a half. I saw a specialist who taught at Mt Sinai. He was a nice man in his 70's who was concerned.
I was beginning to get very fatigued. Much more than with the initial disease.
Just incredibly fatigued. I remember one day I needed to walk 6 blocks. I walked two and looked ahead and thought to myself, "I can't do it, my body, my muscles will not do this". I leaned up against a building. I did it, but very slowly. Something was going on, not the GCA.
The rheumatologist said I was showing Cushingoid symptoms due to the prednisone. We lowered it slowly to 5mg with the agreement that it would have to go up if the symptoms came back. Was taken to the hospital three times for what seemed to be heart problems, but actually showed that three of my ateries were dissecting. GCA can become systemic, I understand. The treatment -- asprin and medrol. I agreed to the higher dosages of medrol. I believe my arteries are somewhat ok, now.
As they lowered the medrol, the fatigue came back, really badly and it was the most severe fatigue I have experienced. I am, as you were, PMRPro, before taking the prednisone, in the chair, for awhile.
Through studying, speaking to many doctors and nutritionists, we have come up with this method with the ginseng and it works. As the medrol leaves my body and then in a day or two this horrific fatigue sets in, I take about three small bottles of ginseng during the day and the fatigue is not debilitating. I am out of the chair.
So, two people with very different reactions to the disease and the prednisone. I am glad it has worked for you and hope it continues to do so. For me, at this point, it is a last resort. I am glad you seem to be through the worst part of PMR. Now, this works for me, with the GCA. I have to have my hip replaced and I hope the inflammation from this, going away, will help.
So much of this seems to be new territory and not always the "expected" or tried true works.
Thanks for your input and I hope in a few years we all speak of those "days" of getting through this, because we are at a better place., with these "rare" diseases.
all my best,
Whittlesey
p.s. on the "internet" -- -- no worries. have been careful with it, for awhile.
Good Morning Thomas45 .I hope your condition only lasts 6 months I was told that mine could last between 6 months to 2 years and it would FIZZLE but 9 years on I am still struggling and taking 14 mg steroid. I've always been told that ginsing doesn't work with the Pred..I suffer from a lot of Fatigue but slightly less since I have been taking Amitriptyline for the last 5 weeks. Hope all goes well for you. trish29
Thanks for all your comments. i tend to use my phone to reply rather than my PC. My phone went wrong and I've had it replaced and only just got round to getting up-to-date with this forum.
I'm still on 10mg. This last week I've had a period of extreme tiredness - go to sleep for 6 hours, wake up, have a hot drink (in my case caffeine- and coffee-free Barleycup, as coffee is a trigger for tripping my heart into fibrillation; caffeine may also be a trigger).; then within 10 minutes go back to bed and sleep 8 hours, be up for a few minutes and then sleep again. I've had some pain in my shoulders and upper arms. Annoyingly I have an unrelated problem which manifests itself with pain in the upper part of my right thigh and knee, and a loose right kneecap. I'm having physiotherapy and doing exercises for that. I'm sure it's the culmination of years of driving with my legs fitting either side of the steering wheel due to having very long legs.
As we go into February I'll be going into my 8th month of PMR. I am seeing my GP to get the dose of prednisolone down more gradually.
I've actually heard 6 months to 3 years as average -- and I do know someone who had it 6 months (a medical specialist so this was definitely the right diagnosis). My understanding is this (short duration) is more common for men.
I went from 10mg to 7.5 myself without issues and after that, did 10% reductions. I was on fairly fast reductions (every two weeks) from 15mg to 7.5 but it took me much longer to get down to 0, after 7.5. In all, it took me two years, but for the final 3 months or so I was only on 2mg or lower, going down to .5mg and used the alternating technique to work down. You'll know you are ready to come off preds when you stabilise at only .5 or 1mg for a month or two, pain is gone, and your rheumatologist signals it is OK to come off. Some people need a maintenance dose of 1mg or so daily it seems, sometimes (my aunt does).
People's experience varies widely with this condition but most need 15-20mg preds to start, need to do very gradual reductions, and will find dropping below 10mg the trickiest bit in part at least because the pills don't come in small enough sizes! Get a nice sharp pill cutter from the chemist. I had one bad flare that in retrospect seems not to have been connected directly to the PMR (swollen and painful knees) -- an orthopedist who has had PMR himself -- he's the one who had it 6 months -- felt the knee issue was already there and the PMR just placed too much pressure on the system. It improved by adding a little ibuprofen daily (on medical guidance as you don't usually want to take lots of these drugs that are hard on the stomach, together).
I fully believe doing as much exercise as possible and watching diet makes a big difference. If I swam a mile my pain would nearly disappear for hours and hours afterwards -- highly recommend swimming.
I'm now nearly a year off of preds. My rheumatologist feels I had a one-off experience of PMR due to stress or some triggering factor. But who knows -- I will always have to keep an eye out for its return, or GCA.
I read some recent research that indicated that being overweight is one of the risk factors for PMR for preds not working as well and PMR lasting longer. So I do think there's a package of elements, genetic, lifestyle, general health, etc that contribute to causing its onset and how long it lasts.
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I had one bad flare that in retrospect seems not to have been connected directly to the PMR (swollen and painful knees) -- an orthopedist who has had PMR himself -- he's the one who had it 6 months -- felt the knee issue was already there and the PMR just placed too much pressure on the system. It improved by adding a little ibuprofen daily (on medical guidance as you don't usually want to take lots of these drugs that are hard on the stomach, together).
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