Hello. Love this site. I'm from Michigan in the USA, and we don't have anything like this that I can find. I was diagnosed in May 2013 and a been on prednisone all this time I just had a flare. So back up to 15 mg and reducing again. Im not so much in pain as this stubborn feeling of the flu. To much time in bed for any QOF. I to excersise daily but than my life quality goes down and find myself napping or just lazy. Thanks for being here
Hi time you said Hi! No - there used to be a good US site but it got invaded by something nasty and most of the members at the time came over here or to one of the other UK forms - we have 3. This was the first, 5 ladies "met" here and formed a charity which has given rise to 2 other forums. All 3 are very different in character.
Have you seen my reduction scheme which I have posted a few times and it, and another version, have allowed quite a few people to reduce successfully.
Look forward to hearing more from you!
Eileen
Hi twigjean I too am from this side of the pond - we are from BC Canada & my husband has been dealing with PMR for over 3 months. He has refused to go on Prednisone since everyone we have read or talked about have never been able to go off Prednisone for any length of time without the symptoms all reoccurring. Have been trying to find anyone where this is not the case. One fellow that lives in our town has told us he has been on it for 8 years & has tried to go off several times but the pain & inflammation returns. He usually maintains at 5 mg but often has flare ups such as you & has to go back to as high as 20 -25 mg for a time. No one seems to have any answers as to what causes PMR or what will cure it. We are trying natural treatments in hopes we can share with others a safe alternative way to treat & cure it. Will keep all informed of our efforts, successes or failures. And yes Natural methods are not cheap but to date we are just under $3000.00 for the treatments & meds my husband has had in the last 3 months. But he is now not in need of any pain killers has no side effects & inflammation is greatly reduced. So hope & pray this continues & he can hold of treatment of Prednisone in favor of actually healing his body & or the cause of this horrible affliction.
Darlene - we can introduce him to quite a few people who have reduced their pred and belong to "Club Zero". Some had PMR, others had GCA, some had both.
The underlying cause of PMR will often eventually go into remission itself. You have a choice of waiting or using pred to manage the symptoms - and some long term consequences. The main cause of these "flares", return of the symptoms, is reducing the pred dose too fast or too far. Done slowly and carefully most people we know reduce to a low dose of pred and the majority get off it altogether. But PMR is NOT a 2 year story as many doctors suggest. Often it takes longer. It is a story requiring patience and not something that can be rushed.
Of course noone has answers to the why and wherefore of PMR - the techniques needed to investigate autoimmune illnesses are new and many still in development. I can't think of an autoimmune disorder where they can say 100% why and only a few where there are adequate drugs that deal with that cause. And they are still very risky and expensive. If you manage to find something that is wonderful - but since PMR can also go away on its own you will not be able to claim that is what did it until many more people have tried it successfully. I wish you luck.
Another Canuck!! I am also from BC Canada. This is a wonderful site and the stories people tell of their experiences with PMR are all different, some very positive and others continue to have symptoms regardless of what they try.
PMR is such a diffiicult disease in that it seems to affect everyone differently. I was lucky in that I was diagnosed in March of 2013 and am already down to 4mg & 3mg. I was good until I got to 5mg then had a bit of a problem decreasing after that. In my last post I was going to try to alternate the 4mg & 3mg for a month before going to 3mg but that was very short lived. I was impatient and it didn't pay off so I am now using the formula Eileen posted and I'm not having any problems at all. Thanks again Eileen for all your great info
I want to get off prednisone as soon as I can and I'm well on the way.
This is "kismet" or whatever you want to call it but my husband and I came to Mexico for 2 or 3 months and I decided to find a yoga class here, I found therapeutic yoga to be helpful when I was at home so wanted tocontinue. A friend referred me to her yoga teacher who is from Quebec, Canada. I e-mailed her with my concerns about the class being too difficult with my PMR because as all of you know, when you overdue it one day you're down for days. Her response was, OH MY GOODNESS, I had that condition in 2000 and have never met anyone with it before or since. She is aware of what I can do and what I can't and I'm really looking forward to her class. She has on prednisone for a year and weaned herself off very slowly. She has been totally off the prednisone for many years and has had no flare ups. Maybe it's the yoga??
I also have a male friend that has PMR and he is no longer taking prednisone nor are his father or uncle that also had this disease.
We all do what is best for our own bodies. They are the only ones that can truly tell us the way to go. I thought you might like to hear there are people that were successful in getting off the prednisone and go into remission.
I'm going to one of them soon
Hi...Darlene. I assume he isn't in a great deal of pain or he wouldn't object to the preg. I was diagnoised in October and put on 15mg and it was like a miracle in less than 24 hours I could move again. I'm down to 10mg now and I am going to try going slowly down as was suggested here. Why are men so pig headed? Good luck.
Hi Twigjean......I'm from the USA too and so very happy to find this group. I'm like you with not very much pain unless I do too much and it takes me a few days of being lazy to recoup. It is so good to know that we are not alone and I thank this group for that. I live in the center of New York State. Wonder if our super cold winter affects us?
Hi ladies glad you like this UK site all of us in uk on site think this is an informative site ,we have saying here, it's best thing since sliced bread,which I consider this site to be since I found it .Here we have fibromygelia is it the same your describing,which begins with a severe flu that never goes 2 friends of mine got it 8 years ago and still have the symptoms to this very day,within 20 minutes of doing anything they are wiped out,their lives have completely changed to what they can and can't do.All began with a virus I wish you all on this forum a speedy recovery from the south coast of Dorset UK
Hi Darlene
"He has refused to go on Prednisone since everyone we have read or talked about have never been able to go off Prednisone for any length of time without the symptoms all reoccurring."
It isn't any fun embarking on steroids but for me they turned out not only to be a life-saver in giving me back some quality of life after being in bed undiagnosed for many months, using wheelchair and ambulance to travel to hospital, but the steroids also saved my eyesight as when eventually diagnosed with PMR, the linked condition GCA had also joined in the 'fun'. I started on 40mg of Prednisolone in 2006 and came off them in 2012 when PMR/GCA went into remission. Many other people we are in touch with have managed to get off steroids in around 3 years, and I have also met some lucky people who have come off them in a year to 18 months.
In its mildest form it may be possible for people like your husband to cope without steroids for PMR but please be aware that untreated/uncontrolled inflammation carries a higher risk of contracting the linked condition, GCA.
I hope he continues to improve.
Hello Twigjean...
...and all you ladies with PMR (I assume we're mostly women here?)
I'm from the UK but belong to a US-based health forum as well as this one. I find both very helpful in different ways, and full of caring people sharing my symtpoms. But then I have so many autoimmune conditions that I have to spread myself thinly!
Like you, when I first got PMR I had flu-like symptoms but was mainly struck down with horrendous fatigue attacks day after day, and spent large chunks of my mornings napping.
Prednisone does do its job, albeit with difficult long-term side effects. I've been on it in various doses for 8 years now, mainly for RA and my bones still hold my flesh together and though my skin is thinner, as is my hair, my spirit is good and my energy levels are in full swing.
There are supplements you can take to diminish the side effects of the steroids, at least so I understand. So far, so good.
Take care, all!
There are several illnesses, probably all autoimmune, that commonly start with a "flu-like illness". PMR and GCA may start with you feeling flu-ey and it is mentioned as one of the presenting symptoms. It didn't start like that for me - my first sign was it being very uncomfortable to raise my arms above shoulder level. I usually sleep with my arms above my head - I couldn't. It progressed with thigh pain when exercising and general stiffness. But I didn't specifically feel "ill" and for many people it starts with suddenly being able to get out of bed!
The typical presentation of ME (Myalgic Encephalopathy) or what is commonly called chronic fatigue syndrome is of a flu-like illness which persists for about 6 months and then intense fatigue remains. Fibromyalgia is another with commonalities. Myofascial pain syndrome picks up the trigger point foci of pain too. MS can appear similarly at first. There are others, including several inflammatory arthritises such as psoriatric and rheumatoid arthritis.
But only PMR is characterised by the fast and notable response to a moderate dose of pred - there should be an approximately 70% response of the symptoms withing 24-48 hours to a dose of 15mg/day of pred (exceptionally 20mg) and this returns in the same time frame if the pred dose is removed. The Bristol group under John Kirwan uses this as a diagnostic tool: other similar presentations do not respond in the same way and require more investigation.
I fully understand a desire not to take steroids - it can be done if the PMR is mild. But for many there comes a point where the alternatives are being a total invalid in constant pain that does not respond to normal pain relief or taking a moderate dose of pred. And, as has already been mentioned, you are at an increased risk f developing GCA - there there is no alternative since the choice is stark: take high dose pred or go irreversibly blind. Long term moderate pred is a doddle compared with the doses needed there, believe me.
The stories you hear about pred are sometimes based on the early days when it represented a miracle. Wheelchair-bound cripples stood up and walked. They probably had PMR. But the doses used then were enormous and did come associated with massive side effects. Other stories are associated with long term use of higher doses - as found in severe asthma for example. My 14 year old granddaughter takes 40mg/day on a irregularly regular basis after a severe attack - sometimes every 3 or 4 weeks. She will need it for life - I hope that will be a long time - and she will almost certainly suffer severe long term problems. Without it she would be dead.
The reality is that pred is one of the most commonly used anti-inflammatory drugs and has been in use for a very long time so the risks are well known. It is there are new magic drugs for RA but, although for the people in whom they work they are a miracle, they have some pretty devastating side effects, cannot be used for everyone, often stop working after a few years - and we have no idea as yet what they do when they have to be taken for years.
There are ways of dealing with many of the side effects - one very simple one is to reduce your carb intake drastically and that helps reduce the possibility of diabetes developing and weight gain. No one develops all 82 documented pred side effects, some develop very few or even none. The vast majority are mild at PMR doses and reduce as the dose falls. I put on weight with one and my hair was like a bird's nest. I've lost the weight and my hair is as thick as it was before - but curly again! Everyone is different - and you don't know how it will affect you until you try.
The bottom line remains: how willing are you to spend possibly years in constant pain and dependent on others?
I did't make myself clear. In the beginning, I had pain and stiffness in my legs, over 2 1/2 months it travel to my shoulders and my hands. Prednisone was then my relief. After my flare, i'm back up to 12 1/2 mg. and I feel flulike most of the time and am extremely tired in and out of bed most of the day. So my question is after 10 months is anyone else as tired as I am and have flulike symptoms. I can't tell which is the PMR or the prednisone. It seems like my rheumatologist goes by the book and offers me no answers to how others feel with PMR.
It seems like from this form everybody has different symptoms is this the case. Thank you.
Twig
I think the basic PMR symptoms are fairly much common but with twists and minor variations. And if it is PMR we respond well to pred. Some people become pain-free, most do not but it is livable with. Pred usually makes people feel better not worse - in fact one GP told a patient recently "of course you feel better on pred, it's a boost" or words to that effect! There are differences between people with PMR and people who have had GCA - that may be what you have noticed.
It was certainly quite some time before I felt really well - but I certainly didn't feel so fatigued I had to stay in bed as much as that even pre-pred, all 5 years of it.
Have you any other symptoms? What has the pred got rid of? Feeling as poorly as that suggests to me there is something else going on. One possibility would be a progression to GCA because that dose isn't enough to prevent that. Or another autoimmune problem. However - the pred deals with the physical symptoms, the muscle troubles, it has no effect on the underlying autoimmune problem and if that is very active it could still leave you feeling pretty wiped out.
twigjean - can you describe your "flulike symptoms"? For instance, along with the extreme tiredeness, do you have head/eye pain and are you having night sweats. I ask because these were among my symptoms when diagnosed with GCA, a linked condition to PMR. If you do have these symptoms, then your present dose would not be sufficient to control the amount of inflammation that is causing those symptoms.
Having said that, flares in PMR are quite common in the first 12-18 months of treatment.
Also, I'm wondering whether following your increase to 15mgs you stayed there long enough to properly get control of the inflammation again. Did your present symptoms disappear when you returned to 15mgs and before reducing to 12.5?
Thanks for everyones help. Okay my last CRP was 2.1, my rheumatologist just ticked me back up to 12.5mg. Medicine here in the states is probably different than in the UK. I will see my rheumatologist again in two weeks. When I was diagnosed I had all of the general autoimmune tests done and everything was ruled out. I reacted to the prednisone immediately and the pain was gone. As time goes on I seem to get more and more tired and that is what concerns me. Since my diagnosis I have had two eye exams, both of which were okay. I have had a few piercing pains in my head but they're only transdent, I have discussed this with my rheumatologist and he says it is not temporal headaches. My pain is well controlled I just feel flulike and tired, the flulike is slightly nauseated and the generalized achiness of flu not the pain and stiffness of the PMR. fortunately I do not think I have GCA. About the night sweats yes I have had a few of drenching sweats less than five since January I would say.
Again thanks