Where does it hurt? | Arthritis Information
All of the literature says that PMR is in the neck, shoulder, lower back & hip areas. Some days my whole back, from the base of the skull to my bottom, the big muscles that run along both sides of the spine, feel sore and swollen. Just wondering if anyone out there has aches besides the typical PMR literature states.
When I was first diagnosed my hands would feel swollen in the mornings but they wouldn't look swollen, kinda weird but this went away with steroids. Now this is happening with my feet. Now it is late afternoon when they are doing this but I don't notice it in the mornings.
So anyway my question: Where does it hurt????
russelcat - when my PMR started, I had "textbook symptoms. " However, as I'm sure many others will agreee, symptoms change and pain is totally unpredictable. For the past couple of months, my pain has been only in both arms, from shoulders through fingers. And if you read about the side effects of prednisone, it can cause some of the things it's used to treat (e.g., muscle pain). Still, it's an imprtant drug for most of us. We're on a very strange and mysterious journey with this disease, and trial and error are part of the trip. Here's hoping we all have competent doctors to help us navigate!
I had a symptom that was not in the list of textbook symptoms.
Before I got my diagnosis, in the mornings I had trouble getting out of bed, my legs were so stiff. Then about 1/2 hour after arising, my legs would get so heavy-feeling and ache-y I would have to lie down, and even that didn't help the pain. Nowhere in the list of textbook symptoms have I ever seen "heavy-feeling, aching legs". Yet this description by me was the "light bulb moment" when my doctor recognized my symptoms as being the same as another patient who had pmr. That led to the blood tests and a firm diagnosis.
For some months before I got the heavy, aching legs symptom, I had strange electrical nerve impulses screeching down my back all the way to my legs when I tried to shift positions lying in bed at night. In fact, for awhile, I assumed I must have sciatica or some type of back injury. I had x-rays and MRI's, and those only showed mild deterioration in one area and a bulging disk. I don't know for sure if all this bizarre pain is related to the eventual onset of pmr, but it must be related somehow.
Hi Freesia,
Have you heard of Skins or a similar compression tight? Athletes use them for training and recovery.When i told my rheumy I had that heavy feeling in legs, he suggested them. No medical reason for us with PMR, but I bought some and wore them to bed in really bad times , and even wore them in the hot summer months in Australia, under long cotton pants during the day. They helped enormously, if only as with many symptoms with PMR , you feel you are taking an active , but not increase of medication roll in your health.
I am going pretty well now, only on 2 1/2 prednisilone, but not able to change this , as PMR is still hanging around and having a bad cold from grand-kids, requiring anti-biotics, and the cold weather we have had in Sydney( I hear you all laugh!! but I deliver a local newspaper with my dog at 6.30am..5 mornings a week), has made me quite uncomfortable.
So , out came the Skins again, under trackie pants. Good luck Zali
Hi sydneypeaches,
I haven't heard of skins. Is there a website where i might view them?
Interesting that you have had that heavy feeling in your legs just like I did. They need to add this symptom to the list.
How long has it taken you to get down to 2.5 mg pred? It sounds like you haven't taken any other drugs to help you along.
I'm debating whether to start taking mtx, but I keep wondering:
maybe it will help me to taper off the prednisone, and that's a big "maybe", but how will I know when PMR has finally gone away ? It sounds like I'll never get off mtx, either. I think I need to post this question in the "methotrexate" thread, too.
Thanks !
freesia
The causes of sciatica are many but it most commonly results from
either a herniated disk or spinal stenosis. Depending on the cause, the
pain of acute sciatica usually goes away on its own in four to eight weeks or
so.A thorough diagnostic work-up will reveal the cause.Fortunately, sciatica
typically resolves without the need for surgery in about 4-6 weeks.
However, if any neurologic deficits develop, such as a foot drop or changes in
normal bowel and/or bladder functions, then immediate surgery is usually
performed.For acute sciatica without any neurologic deficit, the use of
epidural steroid injections can be very beneficial in resolving the discomfort.
For those with sciatic
pain due to a herniated disc lasting longer than 6 weeks,
surgery has been shown to be superior than non-operative treatment. For
those with sciatica or neurogenic claudications lasting longer than 12 weeks,
surgery has been shown to be ore effective than non-operative treatment.When
surgery is required there are several procedures that may be of benefit. These
range from an open laminectomy or laminotomy or even a fusion.
tapsee2011-02-10 03:33:47More trolls I see - wish they'd find another place to advertsie their wares.I saw that, too, and I was going to write a separate post begging to get that guy removed! They must do this electronically or whatever--see the paragraph of gibberish ?
freesia
I thought I posted a comment about the spammer here, but it didn't work! Instead, my "id" showed up on his post???or something.
freesia
does anyone get bad headaches? and has anyone got giant cell arteritis ?Hello Winnie
Yes, I have GCA together with PMR. As for bad headaches, this was my very first symptom before the GCA diagnosis (nearly 4 years ago now) along with disturbed (blurred) vision and difficulty focusing, pain in my jaw bone on chewing and swelling around my eye area and my neck, plus very high ESR and CRP blood test markers As soon as I commenced Prednisolone (40mgs - some GCA sufferers commence on 60mgs or above) the head pain disappeared along with the other symptoms which confirmed to the rheumy that it was, in fact, GCA. I am now on 1mg Prednisolone.
I had experienced undiagnosed PMR for the previous year which did resolve untreated but returned with the GCA. I then learned that PMR sufferers who don't have steroid treatment have a 7 out of 10 risk of developing GCA whereas this drops to a lower risk of about 3 out of 10 for PMR sufferers already on steroids.
If you have PMR alone, then try not to worry about getting GCA as stress doesn't bode well with PMR - you just need to be alert to acting swiftly should any problems suddenly arise with your vision and check for a pulse in the temple area.
I hope this helps to answer your questions but please do ask again if you have any other queries and I will try to answer from my experience.
Winnie
Visit the following site www.pmr-gca-northeast.co.uk and under Useful Medical Information read and download the British Society of Rheumatologists Guidelines on Diagnosis and Treatment of GCA issued June 2009.
When I was diagnosed with GCA four years ago, I looked for information, found others just like me, we got together and there is now a new Charity on the block PMRGCAUK which has some support groups throughout the UK.
http://www.pmr-gca-northeast.co.uk
mrs UK2011-03-04 05:24:13thnx celtic and mrs uk ..
i've been having horrible headaches and sore shoulders had been going to a chiroprator thinking my neck/back needed adjusting. Good thing i went to the dr when i did.
I'm still having really bad headaches adn neck aches, last night i felt like my head was on fire and i was having to use a cold cloths to ease it...i've had more headaches today. it aches from my eye area through the temples and down behind my ear into my neck and down into my shoulders. dr did check me for GCA by feeling a pulse, but i guess i'm just worried because the pain is still there. I wear glasses and so far my vision has been ok.
i think if one had GCA the symptoms are very obvious from what i've read.
So i'll quit worrying :)
Hello again Winnie
I am sorry to hear the extent of the head and temple area pain behind the eyes that you are now describing. It is strongly suggestive of GCA.
Not everyone diagnosed with GCA will experience all the symptoms that I suffered.
As you have been diagnosed solely with PMR, the dose of steroids you will be on will not be high enough to control the inflammation of GCA - a dose of at least 40mg and sometimes 60 is necessary.
GCA is much more rare than PMR so many Drs will not have experience of it and therefore will not recognise it - I saw 4 Drs before I was diagnosed!
If you have not seen a rheumatologist, then I would see one urgently for an opinion and to check that your eyesight is not at risk because once lost it is irrecoverable. Even if GCA is not the cause - and I sincerely hope it isn't - you need a definitive diagnosis to determine the cause of your pain and the necessary treatment.
My very best wishes.
Winnie 15
Take yourself off to the nearest A&E and take the diagnostic procedures with you.
As Celtic says you do not need to have all of the symptoms and the longer you wait the more chance of losing either partial or whole sight and once gone is gone forever.
No Consultant is this world would say to you - 'you stupid woman' - they would realise why you were worried and have every right to be so and want it settled.
Go now - do not wait - I know people who have lost either total or partial because of delay. This is a major reason for setting up our Charity to heighten awareness of GCA and its potential for major damage.
The current figures for GCA are 1 in 50,000 that is why it is not easily recognised.
How do I know all this - I am the one in 50.000 and I was very lucky.
Go now.
Winnie - my tuppence-worth: don't kid yourself, what you are describing could well be GCA. It doesn't matter if we are talking about PMR or GCA - statistics suggest that at least 50% of the patients will present with something atypical! And any doctor should be aware of THAT! Just feeling for a temporal pulse is not enough - it needs something a bit more sophisticated and he should have sent to an expert as an urgent referral. And by urgent I mean NOW, not tomorrow. Your sight is precious and there are no second chances with GCA so better safe than sorry. MrsUK and Pearl have both been there - they know.
all the best
Eileen (MrsE)
will make appt with rheumy this week ... though today i have a sore throat and mouth and wonder if it is a cold on the way? anyhow headache is still there so will phone for apptdid u get a pressure feeling in your head at all?Hello Winnie
My head pain was so bad at the ouset of GCA and a few years ago now so I can't remember whether I actually felt what you call "pressure" - however, have you been checked for high blood presssure as that can cause such a feeling? It's possible that as you now have a sore throat and mouth (flu?) the head pain could be related, but as Mrs UK and Eileen have both also advised, you need to seek immediate hospital attention to rule out GCA - sore throats/colds do not result in loss of eyesight but GCA does and without any warning or symptoms at all in some people's case - you are lucky in that you have a warning! Please keep in touch and let us know that you have been checked out and, hopefully, all is well.
Winnie - if the headache gets any worse please don't wait for an appointment with an office-based doctor. Go to the emergency department at the hospital and ask for advice - they will not be angry at you "wasting their time". You have PMR which puts you at a much higher risk of developing GCA and being on steroids already does not prevent that - the doses for GCA are much higher. There are instances of a doctor or an optician "sitting" on a patient's symptoms overnight to wait and see and they lost their sight. Once too often to the Ed is better than once too few.
best wishes, Eileen
Dr has upped my prednisone to 40 mg as i do have GCA .. am awaiting for a appt with rheumy
thanks for urging me to get the headache attended to!
Winnie15, I'm so glad you heeded the advice given here and went to the doctor !
freesia
i don't want to sound like a whineing kid .. but how long does it take for 40 mgs of prednisone to kill the headache???
I hope that 40 is enough .. should i wait for a few days and if not better ring dr again?
Some people start at 60 mg with GCA don't they?? gosh i don't mean to sound like a worry wart but it's so painful and a bit scary..
thnx
Dear Winnie
I'm so sorry to hear that you've now got a diagnosis of GCA BUT you've taken that first very important step.....your eyesight is being protected!
Please don't worry about feeling like a "worry wart and scared" - those of us with PMR and/or GCA will understand all too well exactly how anyone "feels" when either of these horrid diseases invades our bodies.
Although some people are started off on 60mgs, a high proportion commence on 40mgs, me being one of the latter and I am now on 1mg.
As for how long it takes to "kill the headache", that will be slightly different for different people. For me the intense pain disappeared overnight but other symptoms such as blurring of my vision took a bit longer. You should experience relief of the head pain in about 2-3 days - as long as it takes to get the high inflammation under control.
If you were diagnosed with PMR following both ESR and CRP blood tests which showed raised markers, then your Dr should have carried out these tests again because if you are one of the many people whose blood is sensitive to PMR and GCA, then the inflammatory markers are a good guide as to how well the steroids are doing their job. My rheumatologist carried out these tests prior to every reduction at the higher doses and if the markers hadn't gone down then I was told not to reduce so I did not have to rely solely on how I felt - in fact, unlike some lucky people, I am one of those people who was never 100% free of the body pains of PMR until on the very low doses and some of my pain was, in fact, steroid induced, ie the steroids had weakened my muscles and caused them to atrophy, particularly the tops of my arms.
So, Winnie, it's onwards and upwards for you now and I hope you will have a very smooth journey through this 'wilderness'. Give yourself some extra TLC and give the steroids a chance to do their job.
Do come back and ask away and I and, I'm sure Mrs UK on this side of the pond will do our best to answer any queries or worries following our experiences (me with both conditions) - we have both been there and have the T-shirt and worn it out so to speak! And Eileen will also have loads to offer. But when you feel up to it, do go into that website that Mrs UK suggested - that will give you all the guidelines and 'expert' information you need and you will also be able to read "other people's stories" of their experiences.
My very best wishes.
Winnie
What a relief.
Do not worry about 40mg, I started on 60mg. If your headache persists for long then 4 days, give your medic a call. If the 40mg does not work, they will try 60mg. It will settle.
Do as Pearl says and go to the website, I know its can be a nuisance, but knowledge is power. Read up on everything you can, print off what you want and ask the daft questions. There is also a link on that site to Patients Experience, a very lively forum you might want to look at.
I am so so pleased your sight is being protected.
http://www.pmr-gca-northeast.co.uk
Of course you are scared - I would be! But you are now on the road to recovery now you are on a higher dose of steroids. Don't know how long it will take - I'm a PMR person, that responds very quickly to steroids but there is a lot more inflammation going on in GCA so I would think it might be a bit slower.
Starting dose is variable but does need to be 40mg or above. If you get any worsening of the headache or any patchy or blurry vision, sensation of a curtain coming over your eye, loss of vision whether temporary or longer lasting - don't waste any time. If you can't speak to a doctor immediately, either call or go to the nearest emergency department. They would probably want to increase the dose - you have tablets so that is easy enough to do - or possibly even want to put you on a drip with steroid in it to get the blood level up very high, very quickly.
It probably won't happen - but as MrsUK has said, knowledge is power. If it does happen you now know what to do - and that is half the battle. Use the link, download the diagnostic and treatment guidelines and print them off. Put them in your handbag. If you EVER need them for a doctor who is unfamiliar with GCA, you will have them for their information. You are a rare breed! PMR is common as muck in comparison and they struggle to diagnose that if they haven't seen it before.
So glad our naggig paid off - you've no idea how much I've thought about you over the weekend!
Eileen
Sorry to be redundant, but could someone remind me: are the blood markers always higher when the person has GCA?
Also, is the jaw pain (when it occurs) unrelenting or is it intermittent? It sounds as if the headache is truly unbearable--and sometimes it can even hurt too much to comb one's hair.
(The reason I'm wondering is that I've had what I thought was some tooth pain lately but it's getting hard to determine if it's jaw or tooth--it comes and goes, which makes me think it's tooth-related. I also had used a new nightguard which doesn't fit quite right on my teeth recently---not using it has reduced the pains a lot . I just saw my rheumy today and my bloodwork is good--not quite normal on one marker, but going down -- and I am feeling pretty good--but I forgot to tell her about the tooth ache!!
freesia2011-03-07 17:28:46dr told me to take 20 mg twice a day to protect my tummy... but i thinking that one dose in the morning would be a good way to hit it.
i still have my headache and temple ache though not as bad .. will give i til thursday and see how it is. i find cold compress works a treat.
dr did another blood test to check out the esr etc .. will find out tomorrow.
i feel really bad as i've just yelled at miss 17, i just lost it over something stupid .. i guess it could be the steroids altering my temper .. i think i need to be kept in a padded cell!
i will print some info off for the family to read so they can be informed.
[QUOTE=freesia] Sorry to be redundant, but could someone remind me: are the blood markers always higher when the person has GCA?
Also, is the jaw pain (when it occurs) unrelenting or is it intermittent? It sounds as if the headache is truly unbearable--and sometimes it can even hurt too much to comb one's hair.
(The reason I'm wondering is that I've had what I thought was some tooth pain lately but it's getting hard to determine if it's jaw or tooth--it comes and goes, which makes me think it's tooth-related. I also had used a new nightguard which doesn't fit quite right on my teeth recently---not using it has reduced the pains a lot . I just saw my rheumy today and my bloodwork is good--not quite normal on one marker, but going down -- and I am feeling pretty good--but I forgot to tell her about the tooth ache!! [/QUOTE]
Last week i had terrible tooth aches and now found out it was GCA .. since i had my first dose of 40 mg yesterday i have woken with only one tooth sore and my mouth irriation is lessening. Thank you, Winnie. I am sort of worried but talking to my dentist tomorrow and my rheumy again if necessary. I have been feeling so well, I'd be shocked if I now have GCA but this PMR is full of surprises...nasty ones...!!
Good luck to you! I hope you continue to improve.
freesia
i have this weird sensation with my tail bone area .. it tightens and then loosens .. doesn't hurt just feels weird. it's been doing it for 3 days now. anyone else had similar?Hello Freesia
In my experience, the ESR and CRP blood test markers were higher with PMR at ESR 92 and CRP 157 at the outset. My PMR remained undiagnosed but I recovered spontaneously without steroid treatment within a year (would prefer to have been diagnosed and on steroids regardless of their possible side effects rather than spend 3 months confined to my bed in agony!). A couple of months later and once again in severe pain plus different symptoms, including head pain, and now with a diagnosis of GCA and PMR, my ESR was 46 and CRP 65. So, no, in my experience the "blood markers are not always higher when someone has GCA"
As for the jaw pain that can be experienced with GCA, this is particularly noticeable on chewing and, in fact, strangely, my very first GCA symptom along with a slight headache starting was that I kept biting the inside of my cheeks when I spoke - didn't stop me though!!
If your blood test results are continuing to come down and almost normal and you have no GCA symptoms, then I would think you can rest at ease as regards GCA. I have been having persistent problems with my dental enamel fracturing for the last couple of years necessitating several new crowns - my rheumy said this is a side effect of the steroids, though at my age now I think I was probably predisposed to having problems as my enamel was probably weakend by having to have a lot of fillings as a young child believed to have been caused by another health problem which resolved by having a kidney removed in my teens!
Glad to hear you are doing well Freesia - keep it up!
Winnie
It is generally advised to take the whole steroid dose with or immediately following breakfast, although we have at least one person on the UK forum who divides her dose morning and evening and that suits her. However some people have found that if they take their dose later in the day it can interfere badly with sleeping. As for protecting the stomach from the steroids, I was prescribed stomach lining pills alongside the steroids but could not tolerate these so I have always eaten a small pot of live yoghurt daily which acts as a tummy liner and this has worked very successfully for me. Also great after a course of antibiotics as the live cultures in the yoghurt replace the natural bacteria that the antibiotics destroy.
Yes, I'm afraid the family have to learn that steroids can affect one's 'moods'! I'm sure that most people will agree that they can get more 'touchy' and less tolerant. A daily walk in the fresh air, for as far as PMR allows, is wonderful for releasing those feel-good hormones and is something I have endeavoured to do even if it was only 5 minutes in my early painful days. Also, some little personal treats occasionally, such as lunch out with friends or family, can lift the spirits.
It will be good to find out what your blood test results are tomorrow and many of us on the UK forum keep records of our blood test results, dosages and our pain levels - very useful to look back on during your PMR journey (in case your Dr forgets!!!)
Take care.
Winnie15
Lower Back Pain, this could be caused by the adrenal glands, as the Pred affects them.
Go to
http://www.pmr-gca-northeast.org.uk and under Useful Medical Information read
Steroids and What They Do.(written by a patient for patients).
Also go to Our Stories and read Mavis (mind it does need updating as the back pain has subsided steadily as the dosage reduces). But please remember I only have GCA and you have both.
Thanks, Celtic.
Was the jaw pain only when you chewed or was it unrelenting? I'm just worried as to how subtle the pain is when you have GCA. Although maybe it varies from person to person.
My blood markers are pretty low now--I need to get copies of the reports or I forget, but one of them was 7, and the other now I can't remember but maybe in the teens. Others (I think MrsE was one) have posted here that the blood markers don't necessarily mean anything as far as diagnosing PMR--you could have normal bloodwork and still have PMR.
I've had lots of trouble with my teeth--I've lost quite a few because of fractures. There was a period of time, maybe a few years when I slacked off on tooth care (ignorant!) and now I am suffering. I can't wait to talk to my dentist today since I've been extremely worried about all this.
Thanks so much for your encouragement. I am wary of being too enthusiastic about my improvement, but it is so good to be feeling better, if only for a while.
Hi again Freesia
Yes, the jaw pain was only when I tried to chew foods - not in between, thank goodness!
Yes, as MrsE has said, it is possible to have PMR and maintain normal blood test markers in some cases though increased markers are more common which is why medics do the tests. I am glad that my blood was what the rheumy termed "highly sensitive to inflammation" as it meant I had something by which to gauge my reductions especially as I was someone who remained with some discomfort and stiffness right down to between 2 and 1mg whereas some lucky people become pain-free much sooner.
Good luck with the Dentist today - I have found it a very painful and costly experience of late!
Thanks, Celtic, for this information! I really think this must be a tooth problem but I'm also checking in with my rheumy today just to be sure. I'm having pain even when I am not chewing--but my jaw was quiet overnight and of course I don't eat in my sleep, although I do grind my teeth! It's just so puzzling. I drank a few sips of coffee this a.m. (yes, I went "off the wagon" a bit while I had that flare a few weeks ago and started up with a little caffeine again) and the caffeine seems to have set off the nerves around the tooth because it's bothering me already.
So it sounds like a good thing that your blood markers are reliable as far as gauging reductions in prednisone. This tapering-off business seems to be a fine art!
I guess what I was wondering as far as blood markers and GCA: would they necessarily be higher than mine to indicate GCA ? Mine are 7 and I think one is in the teens (not very helpful reporting, sorry--I wish I would get printed results).
I spoke to my dentist's assistant but won't hear back until later today. I'm kind of on pins and needles.
Dental work is so expensive, and even dental insurance does not help much, so I don't bother with it--not worth the amount it costs.
freesia
freesia2011-03-08 10:57:09The New Zealand link that Rick posted on one of these threads for Winnie answers the "are the markers always higher with GCA". The answer is "No". As is the case with PMR (one in five) about one in six patients with GCA will appear with normal levels of ESR and CRP. Both the diseases need clinical skills and experience to identify although GCA can then usually be confirmed by taking a piece of the temporal artery (a biopsy) and looking at it in the lab in the form of cross-sections made into slides under the microscope. Even then, a piece at least 2cm long is needed and lots of slides made from the entire length as there can be bits where there are no giant cells - the confirmation that it is GCA. The doctor who wrote the article Rick linked to says this should always be done as later on someone may doubt the original diagnosis and try to stop the steroids - because of the fear many doctors have of their use - and this can easily result in a return of the GCA. He feels most GCA patients should remain on a low dose for a very long time. Many doctors believe that once steroids have been given it is too late to do the biopsy but the evidence is that the giant cells can be detected for up to a few weeks after starting the steroids - which is essential to remove the risk of blindness. In the case of PMR, the only real confirmation is that of a speedy response to steroids - typically feeling 70% better within 24-48 hours of starting treatment with a dose of 15-20mg/day.
The pain associated with GCA is called claudication pain - it means it happens when the muscle concerned is used repeatedly and goes away when you stop using that muscle. If you start the movement again, the pain will return. Only the headache with GCA is unrelenting, I suspect, as the brain is rather less enthusiastic about not working! The jaw and tongue pain can be from chewing or even jsut from talking.
Winnie - yes, steroids don't help your mood! Teach the family to ca canny! It is also not helped by the pain and discomfort and the frustration of knowing you are ill and cannot do what you have always done. Mind you - I think I am less bad tempered on steroids than I was with undiagnosed PMR and the pain! In the longer term, it's only fair to warn you that you might have problems associated with the fact you have a chronic disease that has no cure - the steroids don't cure the problem, just make it so you can manage it. And to make it worse you don't LOOK ill so people won't be accommodating and it doesn't have the magic sympathy creation aspect that the big C possesses. Keep in touch here and the other forums we've told you about - knowing there are others out there in the same boat helps a lot when you feel down.
I'm also not sure that the doc is right about splitting the dose to avoid stomach issues - most authorities say take it all in the morning and that reduces the effect on sleep. Always take the tablets with food as that helps with the acid problem but avoid foods with too much calcium at the same time and don't take your calcium supplements ( if you are on them) at the same time as the steroids as that will reduce the amount of steroid you absorb. Hence taking your steroids twice a day and trying to get two doses of calcium supplement a day would pose problems. Do try to avoid using sleeping pills - they don't help that much and you become dependent on them in the long run (someone else has posted a question about this) and it is difficult to stop taking them. If you don't sleep well at night, try sleeping in the afternoon for a while. You need plenty of rest anyway at the moment.
All the best,
MrsE (Eileen)
Thanks, MrsE. I'm trying to process all this info and keep an eye on my symptoms, too. Still waiting to hear from docs.......
freesia
Hello again Freesia
MrsE has given you a lot of good information to absorb here so I will briefly just add one little tip: as you are unsure of your blood test readings, it' a good idea to always ask for the results and then record them. As the PMR and/or GCA journey can be lengthy and possibly with flares, it can be very useful to keep a record of all test results, dosages and pain levels to look back on if there is a query (or if your Dr forgets something!). We also carry a Steroid record card at all times in case of accident or emergency and some people wear a medic alert bracelet.
Hi Celtic
I plan to do this from now on--I need to take a notebook to appointments and write down the blood test results. I do have a card with Emergency Medical Information that I carry in my wallet, with pred dosage, and other meds I take, and contact telephone numbers in case of an emergency. That's a good tip for anyone on this board!
My rheumy did call me and she doesn't think it sounds like GCA at the moment, although I'm afraid I am not a big help describing symptoms because they are elusive and I'm confused and scared. But she did say that jaw pain would occur
when I chewed (like you said) and I'd also have an extremely painful headache. It sounds like way more pain than I have, and different pain.
Right now I feel so emotionally upset--ANGRY because I was starting to feel better and now this, whatever it is! Oh well...I guess that's life... Sorry if I sound angry --but I know you understand because we are all in the same boat with this disease (and hopefully it's not the Titanic).
Thanks again .
freesia
[QUOTE=MrsE]The New Zealand link that Rick posted on one of these threads for Winnie answers the "are the markers always higher with GCA". The answer is "No". As is the case with PMR (one in five) about one in six patients with GCA will appear with normal levels of ESR and CRP. Both the diseases need clinical skills and experience to identify although GCA can then usually be confirmed by taking a piece of the temporal artery (a biopsy) and looking at it in the lab in the form of cross-sections made into slides under the microscope. Even then, a piece at least 2cm long is needed and lots of slides made from the entire length as there can be bits where there are no giant cells - the confirmation that it is GCA. The doctor who wrote the article Rick linked to says this should always be done as later on someone may doubt the original diagnosis and try to stop the steroids - because of the fear many doctors have of their use - and this can easily result in a return of the GCA. He feels most GCA patients should remain on a low dose for a very long time. Many doctors believe that once steroids have been given it is too late to do the biopsy but the evidence is that the giant cells can be detected for up to a few weeks after starting the steroids - which is essential to remove the risk of blindness. In the case of PMR, the only real confirmation is that of a speedy response to steroids - typically feeling 70% better within 24-48 hours of starting treatment with a dose of 15-20mg/day.
The pain associated with GCA is called claudication pain - it means it happens when the muscle concerned is used repeatedly and goes away when you stop using that muscle. If you start the movement again, the pain will return. Only the headache with GCA is unrelenting, I suspect, as the brain is rather less enthusiastic about not working! The jaw and tongue pain can be from chewing or even jsut from talking.
Winnie - yes, steroids don't help your mood! Teach the family to ca canny! It is also not helped by the pain and discomfort and the frustration of knowing you are ill and cannot do what you have always done. Mind you - I think I am less bad tempered on steroids than I was with undiagnosed PMR and the pain! In the longer term, it's only fair to warn you that you might have problems associated with the fact you have a chronic disease that has no cure - the steroids don't cure the problem, just make it so you can manage it. And to make it worse you don't LOOK ill so people won't be accommodating and it doesn't have the magic sympathy creation aspect that the big C possesses. Keep in touch here and the other forums we've told you about - knowing there are others out there in the same boat helps a lot when you feel down.
I'm also not sure that the doc is right about splitting the dose to avoid stomach issues - most authorities say take it all in the morning and that reduces the effect on sleep. Always take the tablets with food as that helps with the acid problem but avoid foods with too much calcium at the same time and don't take your calcium supplements ( if you are on them) at the same time as the steroids as that will reduce the amount of steroid you absorb. Hence taking your steroids twice a day and trying to get two doses of calcium supplement a day would pose problems. Do try to avoid using sleeping pills - they don't help that much and you become dependent on them in the long run (someone else has posted a question about this) and it is difficult to stop taking them. If you don't sleep well at night, try sleeping in the afternoon for a while. You need plenty of rest anyway at the moment.
All the best,
MrsE (Eileen)
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mrs E what a wonderful wealth of information you are!
Today i took my 40 mg all at once with breakfast and 4 hrs later my tummy is still fine, so that will be my long term plan.
I woke with no headache this morning .. after 6-8 weeks of blinding unrelenting head pain i woke with none .. it was surreal as i floated around the house thinking 'wow this is how it's suppose to be' .. !! still have other aches but not nearly as bad, so i can only imagine as the days go by i should feel better.
I'm so thankful for prednisone !!
[QUOTE=mrs UK]WiinieE
I am so surprised you where told to split your dose. You start on either 60/mg or 40mg if given the 40mg and all symptoms do not subside, it should have been upped to 60mg.
Split doses sometimes work on some people with PMR, but I have never come across somebody with GCA being told to split the dose.
Dont' be fooled by the 'euphoria' feeling, it will go. Ups and Downs are 'side effects' read the paper that comes with the pills. Commit it to memory and refresh yourself.
Go to the website and read up on steroids (written by a patient for patients and medically checked - no jargon). Read up on Coping with Fatigue. Read everything you can - knowledge is Power.
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interestingly there was no paper that came with my pills...
had a terrible day today, took 40 mg at breakfast and was in pain again by 11 am .. didn't know whether to cry or bawl. Might have to up it to 60 mg .. will talk to dr tomorrow.
so sore again today .. can't stand the pain any longer so I spoke with nurse .. she and dr conferred and came up with nothing (my Dr not there so it's another random dr) so i said i would take it up to 60 mg tomorrow *cries* and asked them to write it in my notes.. its the GCA thats causing the pain the last two days .. so sore , head throbbing, teeth aching, glands up and sore , jaw throbbing, temples throbbing ..cold compresses are helpful though. I obviously have to hit the GCA hard .. interestingly my blood results came back with the ESR 11 (down from 53) and the CRP - 5 .. so it looks good on paper but not adding up in my body with the symptoms.Hi Winnie, I am not the expert on GCA. But I do have the blood results not matching the symptoms for PMR. My ESR has not been elevated at all, though my CRP started out high. Good thing there are rheumys with enough knowledge and compassion to understand the need to treat our symptoms. Winnie, I can't help you with the GCA complications but I do hope you get them resolved soon. Any of us with PMR could be walking in your shoes at anytime and it is a very scary thought. Hope the increase helps.Freesia - There are plenty of patients who do not present with a "headache from hell" - a biopsy should be done asap if there is any doubt - but even that may not be diagnostic. It is the clinical picture which is most important and if they don't think it is GCA then they should be checking for other options. Diagnosis per telephone is not particularly accurate - and if she gets it wrong potentially dangerous.
Winnie - I'm surprised you haven't been told to go to a hospital. If your doc isn't around then "we don't know..." is downright pathetic!
Hope you feel better soon,
MrsE
Winnie
It's a little surprising that your symptoms have worsened again in spite of your latest blood tests showing quite a significant reduction to normal or almost - perhaps if they were repeated today they would now show increased levels of inflammation again in line with your bad pain.
It's so wrong that you have been left to your own devices at this stage, having to make your own decision to increase to 60mg - at my first appointment with my rheumy and having just started on 40mgs, he gave me a personal 'phone number to contact him immediately should my head pain return.
You and your eyesight are the most important factors here and you should be under expert management.
I do hope you will get quick pain relief from the 60mgs.
I live in a coastal town hours away from a hospital .. and yes that Dr's advise was pathetic .. quite scary to be in charge of managing my own GCA steroid dose .
I pondered on it in the wee early hours .. wrestled with the idea of staying at 40 mg a day but had to be honest and admit that dose isn't working, so today I had 30 mg with brekky and i'll have 30 mg about 3pm today. I haven't had any rantidine this morning and instead had a hearty breakfast of weetbix, banana and soy milk with a piece of toast , and hope that it works well , as i think the tummy lining drugs are causing more pain than preventing it.
Winnie
That must be a problem living so far away from a hospital at a time like this. Is it not possible for your Dr to have either telephone or e-mail contact with a rheumatologist at the hospital on your behalf as you do really need to be under the care of an expert especially whilst you are now on the high dose of 60mgs. Have you printed off the Guidelines that MrsUK recommended to show to your Dr?
Youhad high blood test markers at the outset so you must make sure that your Dr carries out regular ESR and CRP blood tests to ensure that these are normal and that your pain has stabilised before you reduce.
Keep up the "hearty" breakfasts and a daily probiotic or live yoghurt would also help as a stomach protector from the steroids.
Let's hope you are feeling heaps better tomorrow - do let us know.
i took 30 mg this morning and 30 mg this afternoon , i notice after my second dose that my temp shot up and i used cold compress to help with temp, my teeth ached something terrible and i get that jaw ear pain and sore mouth. could it be the prednisone causing this by putting my blood pessure up?? it's scary and painful.
Perhaps i should be taking just one dose of 60 mg in the morning ... it's blinking scary..Winnie - I know its scary and that's without the fact that you seem to be mostly trying to handle this very complex illness on your own. You seem to be suffering a lot of pain still and although not pain-free the worst symptoms should have been under control within 3-4 days of starting the steroids.
I appreciate what you have said about being hours from a hospital but somehow you need to get an immediate consultation with an expert unless your Dr agrees to read the Guidelines we have recommended....and follows them! Do you not have any Accident & Emergency Department around - whatever happens in an emergency?
Yes, there can be side effects from the steroids and some people may not be able to tolerate them at all - those people sometimes have the steroids successfully injected. Do you perhaps have a local pharmacist that you can talk to - they are usually very helpful and can be very clued up.
Do you normally have raised blood pressure for which you are on BP medication? It would be a good idea for you to purchase a BP machine so that if your Dr is not monitoring it then at least you can. Raised BP can be one of the main side effects of steroids.
I was told to take the whole 40mg steroid dose first thing with or immediately following my breakfast although there are one or two people on the UK forum who appear to successfully manage by splitting their dose but they "just" have PMR. MrsUK (another GCA sufferer) also took her 60mg dose all in one go and I feel that with GCA in particular this may be the best option in order to get the inflammation under control.
Also soon after commencing on 40mgs I ended up in Accident & Emergency where my heart beat was found to be all over the place and my white cell count raised - a d