Veins have appeared on my chest

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... 

I will take a pic next time it is bad. Don't worry, I won't try to post it here, but take it to the doc...

Spoilsport! I'm sure I've seen photos posted in other forums (should that be fora??????????)

Related to temperature? Blood pressure?

hehe...

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!

I started prednisone in Jan at 20 mg. I am just starting 12.5 today. Am one time there was mention of a schedule for reducing dosage, a tapering. Can't find it. Could you point me the right direction?

You will find it in the replies to this thread - just scroll down past the post with all the links in it:

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

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. 

Whatever next!...

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. 

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

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?

 

Hi Linda did all 3 people use prednisone? Do you know of anyone who 'came out to the other side' without using prednisone? I am using a drink of apple cider with water in AM. Turmeric root and eliminating sugar coffee and wine ( but I do indulge occasionally) have noticed a slight improvement ( more movement in arms, sleeping better)

 

Hi Pam

All 3 ladies, I believe, had been on prednisone although I only knew them indirectly.  For example, my periodentist asked me how I was doing and then told me her mother had suffered from it but was doing fine now.  I am not sure that everyone is aware of the fact that they are not cured but that PM only goes into remission.  That is something I have learned through this wonderful group of ladies who are also fighting PM.  How are is your pain level using Tumeric root and apple cider?  

Hello Eileen

I am brand new to this site but am so glad I found it.  Like everyone here I am concerned about living with this disease of PMR.  I am 68 and have always been very physically active with weight lifting etc.  The 25th of Feb 16 I did some yard work all day basically and went to bed tired but not unusual for me.  The next am I couldn't tie my shoes or brush my hair and was in considerable amt of pain.  I'm single so I drove myself to Urgent Care.  The 3rd visit (due to no relief with muscle relaxer) I asked for Prednisone after researching the internet. Within hrs I was getting relief with pain and stiffness.  Got in to see a highly recommended Rhumatologist and blood work confirmed PMR.  she put me on 20mg for 3 weeks and then cut back. I had swelling and confusion, rapid heartbeat  and cut the dose myself to 10mg in the am and great improvement.  But this is the 2nd week and my first symptoms have returned not as bad but all the same places. Shoulders, hips, thighs neck.  So I increased  a little 2.5mg this am.  Like everyone else I am scared of the Prednisone and also added Adrenal support Herbal capsule 2x da and so I'm wondering if maybe this is the problem.  Has anyone had trouble with an interaction of the adrenal support herbs with the prednisone? I'm confused as to why the pain and stiffness has returned. 

Thanks

Carol

Carol

In case you haven't found this 

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

here's the link so you can read some good and reliable info about PMR. I suggest you post this as a new thread because this one is very old and most people won't get notifications of the post as they aren't following the thread.

Don't be scared of the pred - the side effects will improve as your body gets used to it and you reduce the dose - but you cannot reduce in big steps like that without the syptoms coming back.

The symptoms are caused by an underlying autoimmune disorder - your body's immune system isn't able to recignise your body as "self" and it is attacking your tissues as if they were invading foreign bodies. That causes inflammation - leading to swelling and pain. The pred relieves the inflammation and so helps the symptoms. 

To start with you need to clear out all the existing inflammation - which is why your rheumy gave you 20mg for 3 weeks. Then you will reduce the daily dose to find the lowest dose that will manage the new inflammation that happens every day. The pred hasn't cured the illness, nothing can do that, but it is there to relieve the symptoms until the autoimmune disorder burns out and that can be anything from a year or two to much longer. You won't be on pred just for a few weeks and stop I'm afraid. This is a chronic illness and you are here for the long haul.

In that link I gave you you will find a link called the "Bristol paper", it explains how to go about managing PMR for GPs but it is fairly easy to understand I think. In the replies to the thread you will find a very slow reduction approach which many people on the forums are using and it helps avoid this return of symptoms as you reduce.

In the Bristol paper they start their patients on 15mg and keep them on that for 6 weeks before reducing to 12.5mg for another 6 weeks. If you have tried to reduce from 20 to 10 after just a few weeks it is probably far too soon and there is still some inflammation hanging around - and every morning another batch of inflammatory substances is shed in the body and causes more. If the bucket of inflammation fills up it spills over and causes symptoms again. You will feel best if all the existing inflammation is cleared out and you are on high enough a dose to deal with each day's new lot. Go too low and you will have pain again sooner or later.

If your blood tests were high before pred then it is worth having them checked every so often. Really you should stay at your starting dose or the next one down until the markers have stopped falling and are steady - then there is a minimum of inflammation in the body and you can try reducing to a lower dose. After a short time on pred your body has become used to it and for some people their body protests if you remove their "fix" in too big steps. That's the idea behind the "Dead slow" approach to reduction. Top US experts said years ago that a reduction in PMR should never be more than 10% of the current dose - 1mg is well below that at 20mg but at 15 it is closer to the 1.5 it should be. It may sound slow but a steady reduciton of 1mg every 3 or 4 weeks is faster than trying a bigger one and having to start over. It is also not good to get into a yoyo-ing pattern with the dose.

The "adrenal support capsule" really isn't worth your money - they are not what you need. As long as you are taking above about 8mg of pred your adrenal glands don't need to make more of the natural corticosteroid called cortisol and a very complex feedback system controls that so encouraging them is pointless. There may be something in the capsules that isn't mixing well with the pred but I don't know.

Also - just because you feel better it doesn't mean you can go back to your normal level of activity - your muscles are still intolerant of acute exercise and need some TLC. You have to find your limits - and they are lower than they were - and stick to them. Avoid the actions that make the pain worse - I couldn't do cleaning, it made my arms and shoulders hurt. Do things in very small bites and rest between times before doing more.I'm not saying do nothing - I'm saying keep it gentle and avoid too much carrying weights. You will manage better later - but first you have to give your body a chance to start to heal itself.

This sounds like great advice. Thanks so much!

Carol

Does Prednisone cause breathlessness, heart palpations, and spider veins all over my face and chest? I was diagnosed with PMR last January and am presently on 15mg ... Doing well with the pain. But, geez, the side effects are no fun. Still soldiering on! Frances

Pred can cause breathlessness and palpitations - but so can PMR. Spider veins I can't speak to, no idea at all. But the palpitations can cause breathlessness if they are an arrythmia - and they DO need to checked out. I have atrial fibrillation - caused, the cardiologist believes, by the autoimmune part of PMR.

What dose of pred were you started on if you are still at 15mg after 7 months? 15mg is a usual starting dose.