Last time round I seem to remember taking it early in the morning, with a little bit of food. But these days I take my thyroid meds, as recommended, early in the morning, on an empty stomach, then wait an hour before eating. This is so the thyroxine absorbs properly. So is it OK to take pred at night? Or at lunchtime? My PMR is back (after 2 years) and I am taking a short course of pred, staring at 10mg and tapering down. But now i'm in a dilemma over how and when to take it. My doctor says it doesn't matter, but I think it does! I have read that prednisone interferes with the absorption of thyroxine. Any advice appreciated. Thanks.
Hi chico, sorry to see you back with PMR again.. as you can see I'm still here, into my 5th Year!!!
If you take Pred at night you could possibly be up all night! I do not have an answer as I do not know about thyroxine. Maybe go half way and have a mid morning snack and take Pred then...
Hope the short course works for you x
gentle hugs, LynThanks very much lyn. How come you are still here after five years?! Did the PMR not get cured and go away?
OK, best not take the pred at night then. I really thought someone here would know about this because thyroid disease is sooo common, especially in women over 50, and there must be so many of us with thyroid and PMR. Oh well!
Cheers
No!!! I have not had any break in this PMR. I have been up and down. I was at 4mg Pred and 200mg Plaquenil then got a T10 wedge fracture from Osteoporosis. Then the pressure was on to get off Pred so MTX was added and Tramadol for the painful fracture... After 4 months of reducing Pred slowly, I was getting stiffer and more pain but I did stop, even thou my ESR & CRP were climbing up! 3 weeks later I was almost an invalid, in pain with extreme stiffness in my knees and arms, was awful! Could hardly get on and off the toilet etc.. ESR at 78 CRP at 38 so back on 5 mg Pred. Amazing this relatively small dose did the trick in only a couple of days! I feel I am one of the people who may need a maintenance dose of maybe 4mg Pred.
When to take Pred for you? Maybe post in the RA forum. They are a lot more active and they are often taking about Thyroid issues.
Hugs, Lyn Hi Chico,
It is ok to keep a small amount or thyroxine out of fridge, so i keep a few beside my bed or in bathroom, so as soon as i wake i take thyroxine, and before i know it ,30-40mins has passed (or longer if I have had to do a wee at 5!!!!!) and then have something to eat and pred.
When I was in middle of PMR. I think I was taking everything together asap......maybe that was why it has taken me 4 yrs to say i am really well. (Off meth last week and now on 2 1/2mgm pred) It is much easier to do all at right time when feeling well.
love Zali
Thanks for that, I do the same, wake up early, take my thyrox and then go back to sleep, ready for breakfast when I get up! So OK then, I will take pred with breakfast. Not that I want to take it at all! lol.
Lyn, that's awful that the PMR has been with you all along and terrible that you have had a broken bone. I hope that the 5mg will maintain you now and that you can get some relief. Last time I took pred I found 5mg to be a very good dose.
Chico Just read your post, I have taken thyroid med. for 30 years. My rheumy said was always best to take pred, 7 am and wait 6 hours and take thyroid meds.
So, thats what I do, seems to work well. I was diag. with pmr. April, 2010. pmr was
slow coming on, then one morning I could not turn over in bed or pull my covers up, this
has been the most life changing time for me. I have always been healthy but I didn't
listen to my body, had lots of warnings. I think stress causes our adrenals to say, I'v
had enough! The sun is shining, its cold,,,our cold is 48 degree, I am in the USA.
Thanks to everyone that post their experiences about pmr, and gca, it has been most
helpful. This is my 7th month on pred. I started with 15mg. tapered to 9 so far...having pain in upper arm, scalp is getting sore and my temples ache. Rheumy said as long as sed rate is down to 30 not to worry about gca,,,well, I'v had all the symptoms except the killer headache, hope he knows best.
Have a Great Day,
KaCee
KaCee - if you have sore temples and scalp, whatever your rheumy says get it checked out, especially if you have any blurring of vision. Not everyone has raised ESR with either PMR or GCA, not everyone gets a killer headache - and it's too late once you are blind, there's no getting it back. It is also possible to develop GCA whilst on steroids if the dose is a PMR one.
Sorry to sound dramatic but one visit too many to the ER is better than one too few. Rheumys often get PMR wrong so I'd be even less confident with GCA!
MrsE
Hi KayCee
MrsE has given you best advice here - if you have any doubt at all that you may be suffering from the symptoms of GCA then do go and get it checked out immediately. I have both PMR and GCA and pre-diagnosis I experienced sensitivity around the temple area and some difficulty with focusing/blurring of the vision. Watch out for any jaw pain when chewing as that is classic proof of GCA but as not everyone gets all the symptoms and there is such a high risk of losing one's eyesight which cannot be recovered, if it were me I would have no hesitation in hot-footing it to the emergency department - I would rather be seen as a nuisance than risk losing my eyesight! Although you are already taking Prednisolone, the 9mg dose you are on at present will not protect you from GCA, the starting dose for which is 40-60mgs (I started on 40mgs). Sorry if this sounds scary but there are people around who have sadly lost their eyesight due to undiagnosed GCA. Very best wishes and I do hope you will be given the all-clear and will go on to make a good recovery from PMR as well.
KaCee...I live in the USA also, where some things are done differently, so it definitely helps to read all the advice and have a rheumy you can trust. A "frequent" test for GCA here is to have temporal artery biopsies. Because I had the jaw pain, my rheumy scheduled one with a surgeon right away and put me on 40 mg of prednisone. That sounds scary, but since you're asleep, it is totally painless. And the possibility of blindness is far scarier! Fortunately, I do not have GCA, but the biopsies contributed to my peace of mind for sure. I wish you - and all of us - the best on this weird PMR journey!
HELLO EVERYONE,
THANKS SO MUCH FOR THE INFORMATION ON GCA.
I WILL POST AFTER CHRISTMAS, BY THEN I SHOULD KNOW MORE.
THANKS AGAIN AND EVERYONE HAVE A MERRY CHRISTMAS AND A HAPPY NEW YEAR!!
KACEE
reply to Ms. E and annuf,
Hello, still trying to find a doctor that will listen, I was diag. with pmr, apr. 2010.
Been on Pred for all these months, down to 7mg. daily. My temples still hurt,
now I can't chew on the left side without excusiating pain. Doctor said could
be trigeminal neuralgia. I am so worried its gca,,, where in the usa, can I go
where they will listen. also, the temperal artery biopsy will not be accurate if
you are already on prednisone, after 14 days. I have been on pred almost a year,
so the biopsy would not show positive,,,the neurologist and eye doctor told me this.
My rhuem, base everything on the sed rate, mine is a high normal 30 after 11 mo. of
treatment for pmr.
what to do, and where can I go?
thanks, Kacee.
Kacee - I honestly don't know what to say to help you except to repeat the fact I quoted today : approx. 1 in 5 patients with GCA (and PMR) will present with normal ESR and CRP values. Did you see the link to a New Zealand site which Rick posted for Winnie in the last few weeks? The doctor who wrote that quotes this figure - it is an article about GCA mainly and by a doctor so maybe if you downloaded that together with the GCA diagnosis and treatment guidelines off the UK PMR-GCA northeast support site and went to a good ED you might find someone who will listen. We could certainly do that in the UK - GCA is a medical emergency and any patient who already has PMR is at a higher risk of developing GCA so we would be listened to at an emergency department.
Have you any other symptoms besides the pain on chewing (does it stop as soon as you stop chewing?) and the headache? Neck pain, dizziness, ear problems, blurred vision, spots in your vision? Does your tongue hurt, throat? Why is it trigeminal neuralgia that the doc thinks of rather than GCA? I don't think if it were trigeminal neuralgia the pain would stop but I don't know much about it.
The only thing I can suggest is try another doc - they could at least try a short high dose trial of pred to see if it helps with the pain as I don't think a neuralgia would respond whilst GCA should. I'm so sorry - it must be really worrying and frightening for you.
MrsE
[QUOTE=KaCee10]
reply to Ms. E and annuf,
Hello, still trying to find a doctor that will listen, I was diag. with pmr, apr. 2010.
Been on Pred for all these months, down to 7mg. daily. My temples still hurt,
now I can't chew on the left side without excusiating pain. Doctor said could
be trigeminal neuralgia. I am so worried its gca,,, where in the usa, can I go
where they will listen. also, the temperal artery biopsy will not be accurate if
you are already on prednisone, after 14 days. I have been on pred almost a year,
so the biopsy would not show positive,,,the neurologist and eye doctor told me this.
My rhuem, base everything on the sed rate, mine is a high normal 30 after 11 mo. of
treatment for pmr.
what to do, and where can I go?
thanks, Kacee.
[/QUOTE]
i looked up the TMJ symptoms and they seem closely related to GCA symptoms.
I'm not sure what you can do except as mrsE suggested print off some data and go see your dr again or a second opinnon.
Since i've been diagnoised with PMR and GCA the pain in my teeth and mouth is very painful, my whole mouth heats up and the jaw , teeth, tongue adn throat ache .. it really screams in pain. I don't think its the high dose of prednisone causing it cos i had this pain on the smaller dose. i see my rheumy on the 31 march and it will be interesting to see what he thinks .. might be tmj after all , who knows!
How are your eyes? do you get that cotton wool feeling on them at all? is your eyesight worse or unchanged?
Its all a bit of guess work for us all isn't it ((hugs))
Winnie152011-03-17 18:48:50Winnie - I wouldn't be surprised if the mouth and eye discomfort/pain is associated with the GCA and the inflammation isn't yet under control. So don't reduce your steroids until you see your rheumy unless you can talk to him personally and he can give a good reason for it. Diagnosis by remote control is NOT a good idea in GCA, unless you are erring very firmly on the safe side.
MrsE
Ms.E, Winnie everyone all the messages on this forum have been so helpful.
Wanted to update.
This will be short due to pain in left side of my head, temples, jaw and tongue, I can
hardly talk. My rheum. said he thought it was trigeminal neuralgia, he said my sed rate
had reduced from 98 to 29 in 11 months, and that would not be possible, if this was gca.
The neuro, in his office said he thought was nerve pain, and they only give medication for
that...well, I told him I did not want to take a powerful drug, that takes 4 months to
control the pain, I want it fixed, not a band aid. Left temple, jaw, left side of tongue, the pain when I try to chew on left side is unbelieveable.
This all started when he reduced my pred from 8 to 7, I have a call to his nurse to see if I can increase pred for short period to see if it helps,,,Ms. E, thanks for giving me that idea, hope I hear back from them today. I was doing so good, then first of Feb. I was taking
pred at 5 am and could not chew my cereal on the left side, called the Rheum. nurse
said she would tell him, no call back, this got worse and now here I am. My appt. is
the 31st. In the states, things seem so different from the UK, etc. If anyone knows
a specialist in this field, please let me know, I will go any where. ,hopefully in the states.
Hope I get to increase pred. and see if I get better, my son thinks I will since I was
doing great until reduced to 7. I played golf first time in 18 months, in Feb. Short drives
but you have to start somewhere...lol.
Thank you all,,,yes I am from the South. Just a southern girl that has hit a hugh bump
in the road...I'v always talked, as a Realtor you have to,,,well thats not happening...
Have a great day, be blessed.
KaCee
KaCee10,
A lot of people here, well-informed people such as MrsE and MrsUK, have said that just because your blood test values are low or normal doesn't mean you don't have PMR but I'm not sure about GCA .
You've probably checked various online sites for trigeminal neuralgia, but here's one in case you haven't --Mayo Clinic. http://www.mayoclinic.com/health/trigeminal-neuralgia/DS00446
Do any of the symptoms sound like yours? I thought that trigeminal neuralgia involved a tic--do you have a tic on one side of your face? (tic=involuntary movement). On the other hand, I haven't heard of GCA making people unable to talk--still, it's nothing to mess around with.
I'm sorry I can't be of more help. It just sounds so painful. It doesn't sound like a good time to reduce the prednisone but again, I'm not a doctor.
Good luck with this. The main thing is not to panic. I'm glad your son is looking out for you!
freesia
freesia2011-03-23 18:25:50kaCee that pain you ar describing is the same as mine. I don't reckon mine has anything to do with prednisone but rather GCA or nerve pain. I see my specialist on the 31 march , so that will be interesting. Theres no way i'm doing anything with my dose until i see the rheumy and get advise and guidence from him.
today was the first morning i had absolutely NO pain in my face/jaw/tongue etc ..its just started up now. Was awesome to have 8 hrs painfree!!
Winnie152011-03-23 18:34:18Winnie,
I also had several hours pain free, but started up late in the am. Our facial pain
sound the same, have you noticed any certain things you are doing such as chewing,
drinking, any movements that start the pain? My first pains were at 7, I woke up late
and was taking pred. and trying to chew my cereal when wow the jaw said No!! lol
What does the pain in your tongue feel like?
I have a call into my Rheum. to ask if its possible for me to increase pred. just
to see if it helps.
Has anyone heard what my eye dr. told me about the temp. biopsy, he said that if
you have been on pred over period of time, that the biopsy will not come back positive
due to the fact the pred has removed the cells, and at that point you have to go on
symptoms. My rheum. bases all on sed. regardless. I think that is so wrong, my son
said we are looking for a new doctor.
Yes, I agree with Ms. E, and all the clinical studies I have read that say, 1 out of 5 will
not have an increased sed rate with gca.
PMR has taught me patience, Prayer has taught me more,,, With PMR, I wonder
where did this monster come from. Stress over 20 years,,,could be.
Have a good day, everyone be blessed.
KaCee
freesia,
I am not very good at explaining this pain,,lol,,, I don't have a "tic", just pain
on the left side, temple, jaw and tongue...its usually when I eat, talk too much
and sometime I do nothing and it starts, today was when I was having breakfast
and taking my pred. The jaw and left side of tongue pain started, temple is also
involved big time.
No one in my family has had pmr, no facial pain, I just get confused and wonder
what really causes all the pmr, and gca's. Maby stress, pushing my body when I
knew I was too tired, adrenal's, etc.
I hope everyone has a good day, I am so greatful for this site.
KaCee
mine is my right side and gets worse when i've chewed or talked ..
the pain in the tongue is a hard one to explain, its like i've burnt the sides of it with a hot drink.
today i have woken with no pain, although now i've just had breakfast the tongue has that sore burnt sensation. My eyes feel sore and fury and i wonder if its the prednisone as it can alter the pressure in the eys apparently.
the last 2 days i have massaged the inside of my mouth, with a clean index finger i gently massaged and stretched any sore points and found that it gave me relief.
as for what has caused PMR and GCA in my life i can point it toward stress, they say it can be from our immune system not working properly .. i had glandular fever when i was 20 so my immune system was compromised at a younger age and i've always struggled with colds etc. But i have also had a lot of stress in my life and i think it probably caught up with me and said enough is enough.
About the temporal artery biopsy: the perceived wisdom is that a biopsy needs to be done within a week to 10 days of starting steroid treatment as - as the doc rightly says - the pred will lead to the disappearance of the giant cells they are looking for. In fact, some studies have shown there is still some evidence after up to six weeks, and presumably at the high doses which have to be used for temporal arteritis to abort the risk of loss of vision. Furthermore, even done immediately, the biopsy may not show any cells as they are not evenly distributed along the artery wall so may be missed. So the clinical picture (the symptoms) is very very important at any stage.
I don't know what happens when the pred dose you are on is low - you would think that if the dose is low enough to allow the GCA to develop that there might be some cells to be seen. Certainly, being on a lower dose of pred (by that I mean the sort of doses used for PMR) is NOT enough to prevent the development of GCA - and we are told that patients with PMR are at a much higher risk of developing it and to watch out for the symptoms. Again, the symptoms can be as variable as those of PMR - by no means everybody suddenly gets a terrible headache or visual symptoms. One lady on the UK forum has just had her pain at the base of her neck and other strange sensations dx'd as being GCA and realises now how much had crept up on her over a couple of months as it has all disappeared with the 60mg of pred she was immediately put onto. Nothing was textbook GCA and it didn't start suddenly.
Personally, if I was having jaw and tongue pain after chewing or talking I'd prefer to have the suspicion of GCA being the first thought and a trial of high pred being tried for a few days (it's done often enough in other illnesses such as asthma and gastriintestinal tract inflammation) rather than something like trigeminal nerve syndrome being brought into the equation. Fair enough otherwise but if you have PMR you are not just another patient come in off the street! One of the clinical symptoms mentioned in the guidelines for the dx of GCA is jaw and tongue pain after chewing or talking, usually bilateral but may also be only on one side. I rest my case!
all the best
MrsE
well i've been on the 60 mg pred for a week today and although my GCA symptoms have improved they are not totally gone. Still having the tongue pain and temple ache, and have spent the last 2 days in bed exhausted. i guess it takes a while for GCA to come under control yet some people report that once they start on the high dose of pred the symptoms go away immediately, i'm not so lucky ..roll on 31 st.
Winnie152011-03-25 15:49:09Hello Winnie
Although the WORST symptoms of GCA can disappear quite quickly after starting the high dose steroid treatment, unfortunately it takes much longer for a complete resolution, and, like you, many of us have to resort to our beds when exhaustion strikes and that is very common in the early days, particularly if we have overdone things on a better day. We all discover the need to pace ourselves so that we don't cross that fine line and overdo things which just results in payback.
As you are finding, both PMR and GCA are very frustrating, debilitating and long-term conditions and as we gradually adapt to that situation and learn to 'go with the flow' and understand that life as we have known it will be different for a while we eventually get on top of things......and you will!
Best wishes,
Hi pearl
yes i did over do it this week .. and paid for it, hopefully i learnt from it too.
Have spent today in bed and let the family fend for themselves, and tonight i am feeling better.
I must remember to PACE myself.
thanks for the reply and encouragement
Ms. E,
Thank you so much for the information, I feel as you do, and I am going to
get my feelings heard Thurs. with the rheum, I feel I definately need to try the
increased dose of pred. just to see if it works....if he says no, I have another apt.
scheduled 2 hours later with another doctor,,,, I have knowledge about pmr and gca
and I do not wish to continue my approach to the rheum. as "just what ever you say."
I know prednisone is my lifeline at this point, so better get my refills ...lol I will
post on Friday the outcome...
Thank you again,
KaCee
KaCee - good luck! As I've said before - they get paid by someone to see you, they can at least be polite about it and not quite so arrogant.
MrsE
Hi everyone, hope you are all having a good day.
Here is my update,
After MRI, lab work, the pain in jaw and left side of tongue is still driving me batty.
Rheum. lowered my pred to 6, I tried that for a week and really seem to be worse, so
I take 7 and 6.5 trying to get to 6. He just does not get it, and the gp. does not
want to make waves. Rheum, said your sed rate is down to 23 and thats great, so lower
from 7 to 6. My bone dens. was normal when I started on pred. but now I am
osteopenia, which is fine line to osteoporosis, My cholesterol is up to 311 total, but
my hdl was great at 111. which gives me a ratio of 2.8. But, the gp, said if I don't
start statin drug soon, I could have heart attack or stroke. He said the prednisone
raises the total cholesterol, and all the dieting and exer. will not help, until the pred
is out of my system, So does anyone have the cholesterol problem, if so what did
you take to lower it, Besides armour thyroid for 30 years, pred, is the only drug I have
taken, so I know very little about meds. Any ideas on the cholesterol and the osteopenia
I sure would appreciate, Exercise is out, I just appreciate being able to due my
daily task, I remember this day last year, I could not turn over in bed or pick my
feet up, dress myself or brush my hair, could not raise my arms,,,,wow, just typing
this makes me so greatful for my pred, even though I am now having side effects.
The MRI showed a looped artery touching a nerve that the rheum. said could
be cousing the jaw pain, but not sure. I'm in pain so I am just rambling on, so
I will go. I still feel gca is causing the problem, I think the artery may be swollen
due to gca and touching the nerve is why it is worse with the lower dose of pred.
It all started when he lowered pred. to 7, that should tell him something.
Anyone taking cholesterol lowering drugs with pred. if so please let me know what
kind....THANKS, AND BE BLESSED. I appreciate all the messages because I know
of no one with pmr, except my invisible friends like MsE, etc, thanks to all of you.
kaCee
Hi kaCee,
Sorry to read of your troubles. I'm going back on statins along with Pred. Three months ago I was happy to get off of statin drugs (Lipitor). I was on 10 mg Lipitor every-other day prior to that. Today I went in to see my GP and get the blood test results taken last Friday. In just 3 mos, my cholesterol jumped from 185 up to 224. HDL is still ok at 53 (was 52) and my ratio now is 4.2 (was 3.6). Also, Triglycerides are up to 169 from 138. So, I have to go back on Lipitor. Since I had a flare up with my PMR while NOT being on statins, we don't think the statin is the cause of my PMR. True, statin drugs can cause myalgia in some people, but not everyone who takes a statin drug develops myalgia. For the next 3 mos. I'm going to take 10 mg every-other day. We'll see if that will be enough.
I told the Dr. that the timing of my blood test last week was terrible. Since the 'flare', I couldn't exercise any more, I was out of town visiting the kids and grandkids for 10 days before the test so didn't eat right. Hopefully now that I'm back on the treadmill and doing some exercise, I'll be able to lower the LDL and triglycerides... along with the low dose of Lipitor.
Hope you start feeling better soon.
RickF2011-04-15 12:22:07KaCee10, I'm sorry for your pain and your rheumy doesn't sound too good, I hate to say it. Sometimes we know what is happening to our own bodies better than the doctors. It sounds like the rheumy has a plan regarding medication, and he or she isn't taking how you feel into account. When I tried to taper, I got down to 6.5 mg; my body just wasn't ready and I soon was in agony. With regard to GCA, my rheumy said if you experience eye/vision problems, take 60 mg of pred and head for the ER. Has your rheumy discussed a plan of action with you, if your vision should start getting weird? Of course, there are all those other symptoms, one or many of which can precede the vision problems so I think there's a warning--like your jaw and tongue pain. Stay aware. I'm not trying to sound scary but as MrsE and mrsUK have said, it's nothing to fool with. I wish I could help you more.
freesia
This is such a controversial thing and even the docs disagree big time. I've been thinking about how to post all night! First - I'll remind you I'm not medically qualified, I'm a scientist who knows how to read publications! And what I'm putting here is a summary of facts from studies that have been published.
First: the pred reduction and ESR - it is accepted by the top experts in rheumatology that the only guide to the pred reduction being right is the patient's experience. The ESR and CRP do not necessarily reflect the disease state. That means the bloods may look fine - the patient, however, does not feel fine. They need to go by the clinical picture - the symptoms. About a fifth of patients with PMR and GCA never have elevated bloods - these docs would never diagnose it on their standards.
Now to the cholesterol. There are two sides to this. When statins were developed, as with all new drugs, a lot of clinical trials were carried out and it was on the basis of the figures quoted by the drug companies that the recommendations were drawn up for their use. They reported a reduction in the likelihood of a patient having a cardiovascular event within the next 10 years - i.e. if someone had a high cholesterol level they were at risk of having a stroke or heart attack and taking statins reduced that risk by an amount. The figures were there, no dispute about that, and statins were launched. They make a lot of money for the companies because of the amount that are used, all over the world.
Later, some people started looking more closely at the figures and realised that, although the companies had tested the drugs on men and women, all the results quoted were for both genders combined. They decided to look more closely at the results for the different genders and found that there is a difference between men and women in the effect that statins have. They have a slightly bigger effect in reducing risk in men. What is more, they reduce the risk in men who have a high cholesterol but who have not yet had a stroke or heart attack as well as in men who have already had one or the other. On the other hand, they found a difference for women who have a raised cholesterol. Women who had already had a stroke or heart attack could reduce the risk of another one by taking statins but there was no change in the risk for women who had a raised cholesterol but no previous history of stroke or heart trouble.
So - if you are female and have no history of cardiovascular problems you should be looked at differently from someone already with heart trouble.
The story is also not simply raised cholesterol = heart attack or stroke. You may be at more risk with a normal cholesterol if you are also diabetic, obese, smoke, have high blood pressure, take no exercise or have a bad family history. On the other hand, you can have a slightly raised cholesterol and be at no added risk of having a heart attack or stroke in the next 10 years because you have no other risk factor to add in. Your total cholesterol depends on the LDL (so-called bad) and HDL (so-called good) fractions, if one is raised, the total will be raised. So you can have a slightly raised LDL and very high HDL and your total cholesterol is high - like yours KaCee. HDL is known to be cardio-protective, i.e. it reduces the risk. The triglycerides are also important - are they raised? The recommendations I found on the internet (I don't know now whether it was the NIH or the Framingham study that quoted them, sorry) say that with lower levels of raised cholesterol you should be looking at modifying lifestyle first and using statins should not be considered until a higher LDL is reached. This is because with every drug there are plus and minus points in giving them. No drug should be used unless the advantages gained from using them are more than the disadvantages - and that applies to statins too. Your doc is saying lifestyle modifications won't help, possibly not but it should be tried first.
Over 60 years ago a study was started in Framingham, Mass, following part of the population there and gathering information about their medical history. It is now into its 3rd generation. There have been many publications about heart disease and risk factors arising from it and one of the things developed has been something called the Framingham Risk Score. This is an algorithm where a score is awarded for for different things, you add them all up and the figure at the end suggests how big your risk is of having a cardiovascular event in the next 10 years. It includes things like smoking, blood pressure, family history - having a parent who had a cardiovascular event at a young age is very significant.
I had cholesterol levels similar to yours except my HDL isn't as high - how did you get it to be so good? I looked up the Risk Score and entered the figures and the result was that I am at a very low risk - so low that taking statins would hardly be able to reduce it at all anyway! Plus, I haven't already had a heart attack or anything. I'd already mentioned the cholesterol thing to my GP in the UK and told her I wasn't prepared to take statins, certainly at present, and she reacted a bit like your GP. And when I discussed it with the GP here she did admit that they know that if you are female and don't already have a problem, taking statins is unlikely to make a difference - even if you are taking steroids. It has been estimated that, in Britain, if they stopped giving statins to all the people who don't really need to take them it would be the biggest saving they could make in the cost of health care. But the knee jerk reaction to a raised cholesterol level is "give statins".
I'm not saying "don't take them". What I am saying is - ask about your risk score. I don't know anything about you, whether you smoke, are overweight, your family history, your blood pressure - but a good doctor will discuss this with you and show you more evidence than just saying "you're going to have a heart attack".
The other thing that needs to be addressed is your difficulty with your rheumy - and I'm with freesia here. If - and I say if - you did have GCA and it is not treated, that is also something that puts you at risk of a stroke or heart attack. GCA is inflammation of the arteries - and one of the recommendations for patients with GCA is that they should take a low dose of aspirin to help avoid the clotting that the inflammation could cause. Some patients with PMR have symptoms that suggest that more arteries are involved - if you get cramps in your legs when you walk for example (this is called claudication) or in your upper arms when you use them. One of the symptoms of GCA is actually PMR pain and stiffness, off course plus other things.
Look on the thread "maintenance dose for GCA" - I've quoted the site for the PMR GCA support group in the northeast of England where you will find the guidelines for diagnosis and treatment of GCA. If you haven't already read them, do so. How much do your symptoms tally with what they say there? Sorry, the link doesn't work - use google to get there! But you need a sensible discussion with your GP - and if he won't rock the boat, maybe you need another. It's all very well saying you might have a heart attack or break a bone unless you get off steroids - but if you have PMR or GCA there is currently only one solution and that is steroids, unless some of the other drugs that are being trialed for steroid-sparing in PMR, like methotrexate, work for you, which is another option of course.
This is a complicated situation - but if you are in serious pain, the PMR is getting worse and all they can suggest is stop the steroids as soon as possible and take statins anyway, they need another game plan.
MrsE
Hi to all,
I am going to a new doctor tomorrow am, will see what happens, my left temple and
jaw are really bad, hope I can get new answers will post my results Saturday.
Thanks to all who answered my last message, Ms E, who put so much time and
effort in her reply,,,it really made everything so clear to me, When you are in pain
you do not feel like researching and it was done for me,,,,thank you so much!
Until later,
KaCee
Good luck, KaCee, and please let us know what happens!
freesia
Yes, good luck from me too, KaCee!Hello all,
I am finally home, have been staying with family until better. I have given up on
doctors, I keep 60mg of pred with me at all time. The jaw and tongue are so painful when
I try to chew, I dread eating. The pain is so bad in early am when I take my pred. with
cereal. After about 4 hours I get some relief. I am still on 6 mg. The last Dr. I went to
said he felt if it was gca my sed rate would be higher, end of subject. I just came home
very depressed and decided I would wait it out, regardless of outcome. I am so tired
of telling Dr. my symptoms and they base all on sed rate. I do not understand.
I believe it was Winnie that had the same symptoms, I hope you are better and
would like to know if increased pred. took care of pain. I haven't started taking anything
for cholesterol, I decided with this pain, why do I need more at this stage.
I have about decided to increase 1mg for a week to see if pain gets better, Right now,
the left temple is aching really bad, I usually take aspirin when this happens, just in
case. Everyone take care, thanks for being there for me.
KaCee
Hello KaCee
I am so very sorry to hear that nothing has been resolved for you in spite of you having seen a different doctor.
I recently attended a meeting for PMR/GCA sufferers held by my rheumatologist, the main aim of which was to gather information for research and to try and set up a Support Group for all PMR sufferers locally. We already have several such groups in different parts of the UK but none here in London and the South East of England at the moment.
He gave a presentation, with slides, on PMR and GCA (otherwise known as Temporal Arteritis (T/A), and I quote below parts of his presentation which you may find helpful:
Temporal Arteritis
. A vasculitis often accompanying PMR
. Known as Giant Cell, Temporal or granulomatous arteritis
. Early recognition essential to avoid irreversible blindness
. Late complications if not treated early and aggressively - higher dose steroids than PMR
TA Presentation
. Headache - severe and localized to temples.
. Fever
. Scalp tenderness
. Jaw pains after eating (claudication)
. 25-50% have transient visual field loss/mistiness
. Blindness 6-10% when unrecognised
Investigations and Diagnosis
. ESR - normal in some cases
. Indicator of diagnosis
. Very non-specific
. Not a good way to monitor response
. Hb low
Management
. NSAID may help and result in a delay in diagnosis
Steroid trial:
. 15mg for two weeks for PMR
. 40mg for two weeks for TA
Reducing dose of steroids over 12-24 months
There are other points such as "Duration 18-36 months" but I feel these are the most appropriate ones for you at this time.
KaCee - you will see from the above that it is possible to have GCA and not have raised blood test markers and the lowest dose needed to control the inflammation is 40mgs.
My rheumatologist is very highly thought of and I have been very impressed with his knowledge and expertise.
You should not be suffering like this especially with the high risks involved and, If it was me, I would be taking myself off to the Emergency Department straightaway, taking a copy of the above points with you.
All the very best and do let us know how you get on.
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