Suddenly 2 days ago lots of large blue veins appeared on my chest, one running across the left side more or less from my shoulder across my clavicle and down a bit. But lots appeared on my breasts. They were there in the evening and much less visible in the morning. Back again at night tonight although not so many or as visible. Anyone know what is going on? It was like I had been scribbled on with a thick blue pen!
PMR diagnosed July 2014. Started Prednisolone 15mg to great effect. No pain now, just the fatigue, breathlessness and denseness. Now reducing down to 11mg slowly.
Hi sheila, I can't help you with that one either, but like you I have noticed my breasts have lots of tiny veins on them. I went to the dr only a couple of weeks about something completely different and my Dr examined all around my breasts for the other thing I was complaining about and she never said anything about my breasts. I've put it down to the weather, and the prednisone but definitely pay a visit to the gp just to ease your mind. Regards, christina
I too get these veins coming up in my legs. I find they are worse if I wear socks or tights. Just wondering (sorry to be personal)! if loosening your bra might help. Have you been wearing a new one perhaps? As Christina said perhaps it is the cold in which case a thermal vest may help. Good luck and take care, Debbie
Like the others Sheila, I don't know exactly what is going on but I was told by my pharmacist that polymyalga is a vascular (vein) condition so this would make sense. Please check with your doctor. I have a lot of pain in the back of my legs and I do believe that it is caused by my varicose veins although they are not strongly visible.
I must admit that I am still confused about PM. Although vascular in nature it is also associated with our bones and muscles. As I have said before, we are the pioneers in this area and hopefully we will find a commonality amongst us as doctors do not know for sure what causes it nor have they a cure. But, on the positive side, I personally know of at least 3 people who have come through this to the other side. By that I mean they are totally cured. Apparently, it disapates over time. So, to all of you I say stay positive and hopeful!
Your pharmacist is right it is a vascular condition - but in GCA it is arteries not veins that are involved and it is very likely the same in PMR. Giant cells only appear in arteries that have an elastic layer in their walls - and PMR and GCA are very closely linked.
An underlying autoimmune condition causes your immune system to not recognise your body as "self" and attack various tissues, primarily artery walls probably, also very likely in the microcirculation (the very small blood vessels) which reduces the blood supply to the muscles and that is being studied at present. It doesn't affect bones, just muscles and tendons and the synovium in joints.
The autoimmune disorder does generally burn out and go into remission - you can't really say it is cured because there is always the potential for it to reactivate and cause a second bout. In about a quarter it burns out in a couple of years or less - but these patients are at a higher risk of relapse than others. About half get off pred in up to 4 to 6 years and the rest need some pred for longer, sometimes even for life. It isn't know whether the autoimmune disorder fluctuates, dying away and then resurging or whether it stays steady but it does appear as if it may go up and down - so you can have a flare that is too much for the dose you have been on for months and you need to increase the dose to cover it. The most common cause of a flare though is reducing too far or too fast - hence the reason we emphasise SLOW reductions.
Research last year found that white cells called neutrophils are heavily involved in GCA and some other forms of vasculitis, it is likely they are also something to do with the mechanism of PMR - and that also suggests how pred works in PMR and GCA since it is known pred acts on the neutrophils.
Hi Linda Good to read your story. The last 3 I've read were totally scary (relapses more horendous than the original symptoms). I am looking for someone who has healed using natural remedies (turmeric, Udo's oil, apple cider drink and avoiding wheat coffee and alcohol)
Then you are really in the wrong place on this forum - almost without exception the discussions here centre on the use of pred.
The stories you refer to were probably what happened when a patient tried to reduce the pred dose too far or too fast - pred is the only reliable way of managing the symptoms until the autoimmune disorder goes into remission. Which it does in most cases sooner or later. But since that is what happens when you try to ditch pred too quickly it seems pointless not to mention it if that has been someone's experience as a warning.
The way this site is run and moderated means that all alternative approaches are directed to that section of the site - not my rules, by the way. If that is what you are looking for then ask in that forum.
But PMR generally burns out in a few years - you can try managing it with alternative therapies in the meantime. I coped for 5 years without pred before it suddenly got far worse. I never had a day without pain, I had a very restricted lifestyle. It wasn't from choice - it wasn't diagnosed. Life with pred has been far more pleasant altogether. In addition, leaving inflammation uncontrolled in your body can do all sorts of damage leading to long term vascular illnesses and increasing the risks of certain sorts of cancer. It isn't as simple as pred is bad, no pred is good.
Hahaha... Eileen, I certainly will. They don't look like varicose veins by the way. I thought it strange that they are there in the evening and nearly gone in the morning. It was very alarming the first night they appeared but they haven't been so bad since, so I'm no longer so worried, although I will mention it to the doc next time I go. Seems pointless to go if they aren't there to show her...
Thank you Debbie. I wear a thermal vest and I don't think its to do with my bra, but then I dont know what it could be... It affects a big vein below my shoulder as well. It was alarming but it has never been as bad since. Very odd. Maybe try taking bra off in the evening, just to test it.
Hello Eileen and Pam, just to add to this debate. An elderly lady (she was 78 at the time) at church told me that she had PMR and it was about 2.5 -3 years before she was well again. Her Dr actually diagnosed PMR yet she never took any medication, why? Because her Dr didn't prescribe any for her. She said that her symptoms were exactly the same as mine and she did have bad days but on the whole the pain and stiffness annoyed her! go figure that one out, but her story does remind me somewhat of your 5 years Eileen before your diagnosis.
as for the natural remedy approach. When I was diagnosed and prescribed prednisone I immediately got on line to firstly see what this PMR was all about and how long was I going to have it for,etc. I then looked up prednisone and cried and cried. I told my husband that there was no way I was going to take this poison for the duration of my condition. (I've always been a bit like that, always preferred a natural approach if at all possible) so again I got online to research natural remedies for PMR. There were many sites that claimed they had the winning herb or the winning ground nut oil that would resolve all my problems. However, I then researched all the so called miracle cures and they all came back negative, and some came back with actual Heath warnings, so what medication have I been on for the last 16 months, prednisone, because at the end of the day it's the only drug that works wether we like it or not. Christina
That happened to me over night. Veins across the chest, shortly after starting Prednisone. Thought it was just an age process but I was only 58. After reading about GCA on this forum, I figured it was GCA trying to rear it's ugly head.
Blood pressure normal. I have a machine at home and check it now and again. Re temperature, I was very warm. But then I am when I'm in bed too and they lessen overnight. Weird!
Yes they are still here - bright blue veins all the time! Just plain ugly. Seem to get worse as time goes on. I have to wear clothing that covers my chest because I am embarrassed. They are so obvious.
Eileen, I need to thank you so much for the information you have provided me on PMR and GCA. You seem extremely knowledegable on the topic and have really opened my eyes! I don't know whether you are self educated or possibly have worked in the medical field but I have learned so much from your post!!
What annoys me is the fact that, here in Canada, doctors either don't know anything about the disease or only tell us what they want you to know. After being professionally weaned off Pred. over a period of months, my rhemitologist said that she no longer needed to see me unless there were new developments within the next short while. She gave me a requisition for blood work should I have the pain again... otherwise, she was closing the file on me. Almost immediately after taking pred. my count of sedimentation went within the normal range and has remained so. The doctor was/is relying too heavily on the blood work and count only! When I told her that I still had pain that "almost mimiced the poly pain" she looked at me as if I was crazy!!
She never explained how PMR could affect the body like you have in your reply i.e. muscles, veins, tenddons and very small blood vessels. This is all new to me and I realize that I need to take charge of my own health and not rely on the doctors! She, I think, was of the train of thought ....only tell me what I needed to know....nothing more.
I must explain something about my fear of pred. I was born with scoliosis (curvature of the spine) and as I get older, like everyone else, I am starting to shrink. I have been taking drugs to offset the loss of bone density due to pred. as well as calcium and vitamin D. However, I am now pre-osteo and I truly fear what the pred. will do to my back if I continue to take it. I am by no means a whimp but I do try to do everything in my power to stay as healthy as possible. When I read that I could be doing a lot of harm to my body by ignoring the pain and refusing to take pred. I was horrified. I had no idea! I thought that because my pain was tolerable (compared to the original pain) I just needed to weather the storm and it would eventually stop because of the few succsessful cases I had heard about. I guess I was truly naive.
I am now told that I need a hip and knee replacement and I have wondered about how this will react or possibly flare up the PMR. I appreciate your advice and background knowledge on PMR and will continue to research it myself now that I have a better understanding of the illness.
I must also say at this point that I, in no way, meant to belittle PMR. It was just that I had heard of at 3 cases within my small circle of friends and/or acquaintances that had mothers or grandmothers who seemed to recover and I was only meaning to share and give hope to some of the ladies in this group (not realizing that it can be dormant for awhile but also has the potential to resurface).
Thanks again Eileen and all the others who have shared your experiences with me. It certainly helps to know that I am not alone. Linda
Thankyou Linda - I studied physiology at uni, worked in the NHS both before and afterwards, in the labs where blood tests are analysed and also as a research physiology technician. I can read a medical science article as well as most GPs and having worked as a translator for many years am also used to putting things in clear and simple English. I've had PMR myself for over 10 years, I found this forum nearly 6 years ago while researching what it was that I had and have been involved in the NE PMR/GCA charity ever since.
I didn't take what you said as belittling at all - I was just explaining that in most cases PMR does resolve eventually - but it is rarely the 2 years so many doctors quote!!
I know 2 ladies who have had hip replacements while still on pred. Both subsequently have got off pred, almost as if the stress of the hip pain was making the PMR worse. TKR is another matter - I don't know anyone who has had PMR and TKR although there is a very active TKR forum on this site with some lovely ladies on it!
If the medication you were taking to improve bone density hasn't been fully effective, have they not considered a different substance? If bisphosphonates are used without optimal calcium and vit D levels they don't work and it isn't uncommon even though patients were taking calcium and vit D - if their vit D was low the 800 IU isn't enough to sort it out. It does say it very clearly in the data sheet but many doctors seem blissfully unaware that they should check calcium and vit D and correct any deficiency first. For example, Forteo can be used then - it actively builds bone. Maybe worth discussing with your doctors?