Take care andtry to pamper yourself too. For me that means watching a soap opera, Young and Restless, that I would never publicly admit doing. Freesia,
I tried Methotrexate for about a 2months last winter. It didn't seem to help me at all either and I worried about the side effects. It also was making me nauseated! I called my rheumy and told her that I needed to quit taking it for the reasons that I just gave you. I'm fortunate, because she listened to me and I just stopped taking it...
I don't like to give advice, really, but can't you just tell her your quitting the methotrexate? It's YOUR body and you're paying her and for the medication. Our compadres in the UK have mentioned that there is NO data supporting the use of methotrexate for PMR. I do think the choice should be up to us whether or not we want to try something that is unproven for PMR.
I'm down to 10 mg of prenisolone now. I went awfully fast down from 16 and now I'm kinda suffering for it. My hips and shoulders have been quite painful the past couple of days. Has anyone noticed that the cold makes your symptoms worse? I want to try and stay at 10 mg. for a awhile before I taper SLOWLY down to 9 mg. I seem to get stuck at 10 mg. and have to go up again. I'm feeling sorry for myself today Just tired of feeling sick and tired.
I keep some record of flare-ups but not too detailed--maybe I should start . Also, thanks for your precise statement about reducing pred--now I really do understand the method. It's just hard trying to figure out if pain you have while tapering is drug withdrawal (from the pred) or a flare of the pmr, isn't it? The unpredictablity of PMR is so frustrating. Your observation that this condition has been ignored because it's an older woman's disease, basically, is right on! If it affected men, we'd see a cure in no time flat.
why my rheumy doesn't want me to quit taking mtx. There must be a reason that I'm not getting at. You are so right, there is no proof that it helps PMR. At first I thought, hmmmm, well maybe I do feel a bit better, but my blood tests didn't show any real improvement. My rheumy said that my physical exam was much better last month, so maybe it's the mtx helping that? It hasn't helped the tapering, so far. I don't feel like taking it to help promote the pharmaceutical company's statistics and sales, if that is what is going on. As far as the cold making symptoms worse, I think there is some truth to that. It has been cold here lately, and the pain seems sharper. I've noticed that on clear, warm, sunny days I really do seem to feel better. I get tired of feeling sick and tired, too--so you have company here!!! As luckycanuk said: pamper yourself!!! Feel better...
We decided amongst us on the UK site that steroid withdrawal pain tends to start and then decrease over two weeks or so. A flare because the dose is too low starts and steadily gets worse over the same period. We felt giving it 2 weeks was fair enough - pain there and getting worse, go back, pain there but improving, pamper yourself gor a few days until it settles down.
There is an article on the pmr-gca uk northest support group site by a lady in the northeast of England who has been on mtx for over a year and had great success in reducing her steroid dose. Anecdotally - i.e. reports of a single or small group of patients benefiting - some people do find it helps. It's seems to be a suck it and see thing. But there doesn't seem any point using mtx if it makes you feel ill does there? And it can have horrid side-effects too. Swings and roundabouts!
freesia - where are you in the US? I've been in the UK for 2 weeks, it's hailed, thrown horizontal rain at me and been a permanent howling gale! Starting to look forward to getting back to my mountains and the usual lack of wind. Cold's fine, wind NOT!
Thanks for your input on the tapering pain issue, that was helpful.
As far as the mtx: I had great hope that it would help me taper as it did those several people I read about here, but I think it's too soon for me to taper anyhow(blood tests still not normal) and now my body seems to be going a bit haywire as you have read. I'll hopefully be in touch with my rheumy later on to discuss this. By the way, I just corrected my post about the liver test values...that particular value is called ALT, not ATP. Guess I am losing my mind on top of everything else that is happening!!!
I'm in Northern California! That UK weather sounds really miserable. Is that in London, or out in the countryside? From what I hear, we are in for a wet winter here.
The weather was way north of London! I started in Scotland and moved down to North Yorkshire on the east coast and then had a weekend on the west coast - all disgusting! Wind and horizontal hail! Now I'm home in northern Italy and it's yucky - cloud and rain/snow forecast for the next 2 days. The up-side is winter is being promised for the second half of next week. In time for the ski season, so that's OK!
As for losing your mind - that's PMR and steroids! It took me 3 attempts to do a subtraction yesterday, first 2 attempts I added the figures. And I knew the mistake I'd made! Sheesh!!!!!! Used to be good at arithmetic.
I want to say "lucky you" for being in Scotland and North Yorkshire, they sound like such a beautiful area-- but I guess not, not now, with weather like that. I'm trying to imagine horizontal hail! It sounds like Italy is pretty yucky, too, this time of year. Do you find that rainy/overcast weather affects your PMR negatively? I think it affects me--but maybe it's the osteoarthritis I have in some spots which is being affected.
You sound like me. I wonder if we will get our mental capabilities back when we are off steroids?
Scotland and N. Yorks are beautiful - even in yucky weather! Just look at it from inside the car - the problem was having to pack/unpack the car in it!
No Italy isn't necessarily so - here, in the north, once it settles down into winter it will be sun and snow, dry-ish cold and blue skies! I don't mind the cold as long as it is dry. Last winter we had -17C (sorry - F readings escape me) and when there was no wind it was OK to ski but damp is not nice so yes - rainy doesn't do any good to PMR or osteo. The German weather forecast gives "bio weather" predictions - the ailments that are badly affected by what it will be! Usually right - include rheumatics and arthritis, blood pressure and heart.
The mental capacity is usually only an issue if I try to do 2 things at the same time - PMR turns us into men! (NO, Rick, that isn't a denigrating men comment, it's a reference to men not being able to manage multi-tasking ever).
Sorry I didn't see your post before now! Sometimes I just get lost amongst the threads!
I had to look up the conversion chart for Fahrenheit to Centigrade; -17C is 1.3 Fahrenheit...pretty darned cold! It sounds very pretty over there.
That is pretty nice that the German weather forecasts include ailments affected.
It's been a month since I started taking medication for my thyroid (and stopped the mtx after 2 months taking it), and I seem to be improving with the PMR. Seems like a miracle. Yesterday morning I woke up and my legs almost felt normal. I couldn't believe it (my neck, upper back, and right arm still hurt). I have managed to taper to 7.5 mg down from 9 mg since Nov. 19, and feel like going lower, although I don't want to have a flare. The thyroid issue is new-- I'm sure my thyroid was okay at the time I was diagnosed. I'm trying to figure out how medicating it fits in with my PMR improving. Maybe it's just a coincidence.
I seem to have mental issues if I get emotionally stressed--it seems like my mind isn't working just right off an on during those times. That could be age, though.
Freesia - now that IS interesting about the thyroid treatment being paralleled by an improvement in the PMR. I don't know if I've ever mentioned it in a thread here that you have read but there is a doctor in the northeast of England who specialises in chronic fatigue syndrome and similar ailments. One of his patients told me he often gives a low dose of throxine - i.e. treats them as potential thyroid patients - and finds they do very well. One of the things which should be ruled out when a patient presents with PMR is a hypothyroid problem as that can also cause stiffness and joint pain but generally the tests done are the ones that are for obvious thyroid problems. Some experts are of the opinion they are too "coarse" if the problem is a subtle one - does that make sense? I can't think of another way to express it. But low thyroid function also makes the brain slow down, and it can be an autoimmune thing - so is it related?????
And I know what you mean about the brain not working right if you are under any pressure - it was one of the things that really drove me mad prior to diagnosis as I'd always been able to manage to juggle several balls at once previously. Now I can't even pack a case to go away for a few days! I don't know if it's age - it started in my early 50s when the PMR first surfaced identifiably.
So pleased to hear about the improvement though - long may it continue!
MrsE
I'm glad to hear that I'm not the only one that has mental breakdowns when under alot of stress. It is not so severe that I cannot function but it seems like I can't keep things straight or in order. I too used to be able to multi-task like crazy but no more. If I don't make lists I am lost and will definately forget something. I do blame some of it on menopause though. Seems like things have kind of went down hill since starting it 2 yrs ago.
I am now down to 8mg from 15mg prednisone since May 2010. My rheumy has me dropping 1mg each month right now. I did start having issues with my legs when dropping from 9 to 8 but it has gotten better. I also have osteoarthritis in my spine and the cold weather really affects it so I can't hardly use the shoulder or lower back pain to judge my PMR issues. I am in Ohio in the US and our wind chills here are below 0 degress F. When the weather fronts come down from Canada my whole back feels swollen and sore. Ohh, poor me!
Glad that you are doing better Freesia. Keep us updated if you find anything else out.
Nuh - the PMR and brain-sludge came long before the menopause! Can't blame it on that! Just don't talk to me when I have something to do and I'll probably manage it. And the lists thing - only way to go. Trouble is you leave them lying where you were writing them! I used to be able to get away with that - I had a photographic memory so I just imagined it and read it! That went AWOL too.
MrsE
Hi MrsE and russellcat,
After feeling so great on Sunday, I woke Monday morning with the same old stiffness, so I thought: there goes the miracle. However, my physical therapist reminded me that it was getting ready to rain on Monday, and that was probably the cause for the relapse. Tues morning was a little better and this morning, Wed., my legs felt almost normal again, just like they did on Sunday. The rain is gone, too. I believe the weather is really affecting me!
That is interesting about the doctor and the thyroxine. My primary care doc is the one who discovered the thyroid problem and she did tell me that it can make people feel achey. I think I know what you mean about the blood test being too coarse--some blood tests are overly sensitive, so I'm sure others might be not sensitive enough--maybe I did have some subtle thyroid thing going on right from the beginning, and it only showed up just recently. I hate to think I've been taking prednisone for almost a year for what is really a thyroid problem, but oh well--what can you do?
I finally got approval for an MRI of my cervical spine....this is for the injury on July 4 when I was picking weeds in the garden --it still isn't better. russellcat, were you the one who had a similar problem, and had surgery on your neck? The doctor waited awhile before asking for the MRI, since it didn't seem necessary, but now it seems as if the neck problem may be referring to my shoulder and arm (or is the pain caused by PMR???--such a mystery ).
Anyway, the MRI will be on Saturday and I see my rheumy on Monday--I also had blood tests yesterday so I'll be getting lots of news on Monday!
russellcat, congratulations on your taper of prednisone from 15 to 8 mg since May! That is great.
By the way, my physical therapist has recommended water exercise in a warm water pool so I am going to try that. It sounds great.
I try to make lists, too, but then I also leave them at home. It's awful when one's body isn't working right and then the brain starts failing, too.
freesia22010-12-15 12:12:22Yesterday I felt WONDERFUL - couldn't say what was different, but the day before I'd had 2 coffees which I don't normally drink. Today I have felt rubbish! The weather is about to change again though - and it is rather chilly here! I used to do aqua aerobics before I was diagnosed - in a warm pool - brilliant! Could move so well after! Pilates and yoga were good too. Not an option here unless you have big bucks and we're semi-retired so the answer to that is no!
RE- the "injury" while weeding - I had that a couple of times, the Germans call it a "witches shot" - I think mine was part of PMR as it improved dramatically at higher steroid doses and has returned as I go down.
I wonder how long we need to accept we are now a little older - things don't work as well, clothes aren't cut right to fit... I got part of the way there about clothes this week. Still not happy about it though. I have a wonderful neighbour who is lending me clothes so I don't look an absolute sight when I spend Christmas and New Year with Italians in the "deep south" - almost falling off the end of the boot of Italy! I don't do clothes shopping - or any other sort of shopping really. Takes too long and far too much effort! However - "la bella figura" is seriously important down there!
Happy Christmas (Hanuka or any other holiday, I'm a Brit, there's Christmas for us, not much else!) and all the best for PMR getting dumped in file 13 or Room 101 or whatever.
hugs to all, MrsE
Fressia, sorry to hear about your neck pain, it can literally be a pain in the neck! I have degenerative disc disease (hereditary) which causes my disc to dry out and herniate easily. I did have fusion surgery at C-5/7 and still have pain 4 yrs later. Before the surgery I was having alot of arm & shoulder pain like a deep ache, tingling down the arm, numbness in my thumb and half my index finger and at one point I lost the use of it. Just got so bad it wouldn't lift anymore. The surgery relieved the above symptoms but I still have pain from the osteoarthritis that has developed over the years.
Don't get too worried though. This past summer I was using my hand trough (hubby won't let me touch a shovel anymore) to weed and overdid it. My neck & shoulders were swollen and sore for a long time. This was before PMR. You may be developing some arthritis in your spine and the MRI will show any osteophytes (bone spurs) which are a sign of osteoarthritis. I've tried most of the meds for arthritis but plain old tylenol helps me the most but everyone is different. There is a non-narcotic pain med called Ultram (generic is tramadol) which I use along with the tylenol and it does help. It is very cheap too. I'm never pain free but it is manageable.
Let us know what you find out with the MRI Saturday. Regarding the list, I just did exactly what you and Mrs E do the other day. Made a list and left it on the table. Do that often!
MrsE, Coffee can be a great stimulant; I love it, but because I know that caffeine and the acid can contribute to osteoporosis, I stopped drinking it as soon as I started on prednisone. For me, it is too stimulating, I think! I actually find myself tripping and falling a lot when I drink coffee, and that is scary! A medical technician told me it sounds as if it affects my parasympathetic nervous system (I tried to find out what that is but don't understand it).
I'm glad I re-read your post because the first time, I completely missed the part about the "witches shot". What a good name for it! I'm sure that it is entwined somehow with PMR, but I don't know how. It happened to me around the same time that I got those weird bruises on my finger (also when I was pulling weeds!) Guess I'd better stay out of the garden!
As for clothing and how it fits: I guess it is age and my more portly figure (heavier than in my younger years), but honestly, I'd swear the manufacturers fit jeans and pants patterns to some alien body form! They just don't fit right anymore. It is a relief to know you have something that looks good to wear to special occasions, MrsE, and I hope you have lots of fun in Southern Italy! I bet it will be warmer than northern Italy?
Yes, Happy Christmas, it's a fine happy greeting, and even if people
observe religions that don't celebrate Christmas I'm sure they accept a
kind greeting. I second the idea of PMR getting dumped into File 13 !!!
russellcat: I'm glad the surgery relieved those pains that were going down your arm from your neck. The tingling must have been nerve involvement. Fusion surgery sounds very scary; you were brave to go through with it. I guess I have to admit it, I have osteoarthritis. I still want to believe I am 39 years old (haha!). I really can't wait to see what the MRI reveals. Maybe I ought to try some good old tylenol. Since I've been on prednisone (almost a year now) I haven't taken one painkilling medication! I guess I figured that prednisone should be enough (it's not, apparently) and also I was scared to start mixing meds. Although I know that pred and tylenol are fine together. I'm just sort of sensitive to medications. I'll keep you all posted on the MRI results.
Take care,
freesia
freesia22010-12-18 08:57:55P.S. MrsE--I'm lucky that the Warm Pool is free, but yes, pilates and yoga here are also pricey. Unless you can find a good yoga class at an adult school somewhere --pilates seems to always be expensive.
freesia
Update: I got my MRI results last night. My neck and cervical spine have a little stenosis and arthritis, but they are not worse than when the last MRI was done, which was last December. Contrary to what the x-ray results were a few months ago--that things looked worse. So I've been fretting for months thinking my body is going completely down the tubes, when it isn't so. However, I didn't ask the rheumy the obvious question: if my neck/spine look the same, why do I feel so much more pain than I did a year ago?
She says my shoulder and arm problem are bursitis, and if they don't improve within about 3 weeks with the physical therapy, then I will need an injection. Again, I didn't ask the obvious question: an injection of what?
My blood values are about the same (not in the normal range) but my CRP decreased by about .3 of a percent, which isn't bad considering I'm tapering the prednisone and the values weren't normal when I started. So all in all, I guess the news was pretty good. I still can't figure out why my neck and upper back pain is worse if the MRI looks the same.
Hope you all are enjoying some good holidays.
freesia
Has she considered the shoulder pain/bursitis are a component of the PMR as they are typical findings in research on PMR and do not need to be bilateral? The increase of pain may be because of the reduction in the dose of steroid over the period so that the PMR inflammation is returning. Lots of us find that the PMR pain varies, especially if you have a flare.
Have you had a look at Neuroscience for kids? It gives a nice explanation of the sympathetic and parasympathetic nervous systems. They are the parts we can't control consciously usually unlike "telling" you hand to close round the wine glass and lift it to your lips, for example, but control the heart rate and lots of other things. The sympathetic bit is the "fight and flight" side, increasing heart rate and muscle tone, whilst the parasympathetic side returns everything to normal when you relax.
Injection of what - of cortisone, to reduce the inflammation in the shoulder joint (the bursitis). Have you tried icing? 3 times a day, 10-15 min each time. Might work.
all the best, MrsE
I was happy to be down to 5 mg of prednisone and then I was
diagnosed with Sjogren's Syndrome in August. I had to go back up to 10
mg of prednisone plus 400 mg of Plaquenil. Now I'm trying to get the
pm dose down to 2 1/2 mg, but I'm hurting. I don't know if it's from
PMR or Sjogren's or does my body just want that prednisone? I had finally
accepted I have PMR and I thought I could handle 5 mg. a day forever if
need be,... Now this! I need to remember to pop in here more often for support
Hi MrsE ,
Sorry it's taken me so long to see your response to my post! Thank you so much.
I think you are right, the PMR is playing a role in the shoulder problem--but I'm not sure the rheumy thinks so. I have an apptmt with her on Monday. Honestly I don't know how she came to the conclusion that it's bursitis when she has never looked at my shoulder? Don't doctors these days ever look at the patient's body? Especially for conditions like bursitis which I understand has outward manifestations.
My physical therapist worked on my right arm/shoulder one day and then it felt normal (gasp!) for the entire day...I can't even tell you how good it felt to
not have pain! She says I've got this whole syndrome with faulty posture going on which is affecting all movement in the upper body, and my arm is not sitting properly in the socket.
I will check out that Neuroscience for kids. Thanks for explaining what the parasympathetic nervous system is. That makes sense!
As far as the shoulder pain/bursitis: I guess that is what I am in for: a cortisone shot, and I am not looking forward to it. I guess I should try ice, but the only thing that really seems to feel good, or appeal to me, is heat. That is possibly the wrong thing. But for example, I went to the Warm Pool to swim and exercise for an hour a few days ago and was pain-free for almost 5 hours afterward.
I'm down to 5.5 mg of prednisone daily, but my bloodwork was not back to normal when I started tapering so I am in a world of hurt now. I can't move easily until about 7 p.m. --walk like a robot and can't bend over easily to pick things up off the floor, etc. If I take a nap around 2 p.m. it does help me start to feel better. I think I started the tapering in Oct. or Nov. last year, 2010. I was at 9 mg when I started the taper.
Does anyone know if exercise can actually be bad when you have PMR? I've been riding a stationary bike every day for about 30+ years now. I used to ride it for an hour or more a day but now I only ride for 30-40 minutes per day. I don't work up a sweat, I just pedal and pedal at the lowest level ! My legs feel pretty stiff afterward. However, if I skip it, I feel worse!
Anyway, maybe this info can help someone else.
Thanks again, MrsE !
freesia2
p.s. freesia and freesia2 are both me! It's a complicated story of lost passwords, cleaning my computer registry, etc etc! Sorry, hope it is not confusing. But we are one and the same person.
freesia2011-01-21 16:30:31Hello all, I haven't been on here in a while and see some new names. I have been on Pred for coming up on 3 years. I have tapered down to 4 mg with 2mg when I get up and 2mg with my lunch. I have been reducing 1/2 mg every 5 to 6 weeks. Since droping from about 6mg each 1/2mg has been tough. After about a week I get worse and worse and then about 3 weeks out I climb back up to feeling almost normal. The key word here is almost normal. If I over do a physical activity I may have to pay a price, but I do get better just in time to start a new taper. The biggest problem I have had, which leads to my question to you all, is sleep. When I was on my higher dose of pred (60mg), my doc gave me some Tylenal #3 and Lorazepam to help me sleep. I needed it most nights to get to sleep. Now that I am down to 4mg and almost ready to go to 3.5 mg I want to stop taking the #3 and Lorazpam. I tried now for several nights and at 3am I am still awake with restless legs and my mind going a hundred miles an hour. Do you have any idea's to help with this or should I just not worry about getting off these drugs until I am off the Pred. The good news is, my weight is back to normal after gaining almost 35 pounds and my activity level is improving. As much as I couldn't live with the PMR at its worse level, I hate the effects and damage the Pred has done. I can't wait for the day I wake up after a good nights sleep with no drugs in my system. As I see that small light at the end of a long tunnel and knowing what I know about Pmr, I just hope it is not a train. LOL
Wishing you all well on your journey
Craig
Craig
I don't know anything about these sleeping pills (I just stayed awake!!!) but do they come in doses that it is possible to reduce slowly? I just wonder whether your body is so used to them now in which case a slow withdrawal is necessary. Sorry, but the only other suggestion I can offer is to look up soporific foods and avoid anything containing caffeine such as caffeinated tea, coffee and chocolate.
Thanks Pearl, I have cut them in 1/2 and that doesn't work. I see my GP tomorrow and hopefully I can get a plan. What I don't know is if the pred level of 4mg is still enough to keep me awake. I do suspect it's from being on the sleeping pill too long. So goes the battle.
CraigCraig - It can be very difficult to get off sleeping pills if you once get into the habit of using them. At 4mg you are on a very low pred dose and that is less than your body makes anyway so it shouldn't be keepng you awake if you take it in the morning - pred has a half-life of about 4 hours so there should be very little left in your body by night time. In terms of the pred you could ask your doc about trying alternate day dosing at that level (can be used below 10mg a day) where you take double one day, nothing the next - and then there is definitely not enough pred left the second night to keep you awake!
As for weaning off the sleeping pills - no experience about that but it must be like most addictive things, there is a degree of pain to go through unfortunately. The best way to deal with sleep problems is to get a habit sorted out so that you have a pattern that you associate with bed and sleeping, never do anything other than sleep in bed - don't lie there awake, read, play computer games and so on. I can't remember it exactly, but one sleep lab recommends something like going to bed for slightly less the length of time you do usually sleep and getting up when you wake. The time you sleep for will increase with the need for sleep and eventually you start to sleep for longer. But you never remain in bed after waking up. Have you tried googling it?
You do have my sympathy - a bad night's sleep always means a bad PMR day for me but which is cause and which is effect I don't know. Good luck,
MrsE
craig ask your Dr about melatonin .. it's something our brain makes naturally but some of us make less of it .. google it to find out more .
I take 1 mg at night but apparrently you need at least 7 mg for it to be affective. I take zopiclone sleeping pill and have taken them for 3 yrs now .. apart from PMR and GCA i also have fibromyalgia, i started taking sleeping tabs just to function during the day and to keep my fibro at bay .. it's something i'm prepared to take for life. But i'm also prepared to look more into
melatonin as a good therapy.Winnie - is it really fibromyalgia do you think? Might it have been undiagnosed PMR? I only ask as when I researched my symptoms there was only a small difference between the 2 - except PMR responds to pred and fibro doesn't. And that was the difference for me.
MrsE
[QUOTE=MrsE]Winnie - is it really fibromyalgia do you think? Might it have been undiagnosed PMR? I only ask as when I researched my symptoms there was only a small difference between the 2 - except PMR responds to pred and fibro doesn't. And that was the difference for me.
MrsE
[/QUOTE]
thats the million dollar question aye .. dr said the same thing .
could have been PMR all long, although my inflammatory markers weren't up 4 yrs ago and that is usually a good indication of PMR aye.
My inflammatory markers have never been up - even when my PMR had just about floored me. Are your markers up now because you have GCA? Patients with PMR are at a higher risk of GCA and anyone who has had PMR but not been treated is at an even higher risk.[QUOTE=MrsE]My inflammatory markers have never been up - even when my PMR had just about floored me. Are your markers up now because you have GCA? Patients with PMR are at a higher risk of GCA and anyone who has had PMR but not been treated is at an even higher risk.[/QUOTE]
really?! your inflammation levles have never been up ? well that shines a whole different light on it then aye. I could have had poly for a lot longer and never knew it then. My markers are prolly up because of the GCA , you're probably right!
Approximately one in five or six patients with PMR or GCA never have raised levels of the ESR or CRP. The diagnosis should be made on the basis of the clinical pictures (i.e. the symptoms) and excluding everything else it could be and about the only confirmation of the diagnosis of PMR is that the symptoms respond to some extent within hours (24-48) of taking the first dose of steroids. Even then, some people take longer or need a slightly higher dose. But basically, if it doesn't go away with steroids - think again about the diagnosis. With PMR, it isn't an emergency and the doctor can take a bit of time to look at other possibilities unless it's so obvious it can't be missed.
In the case of GCA, it is a medical emergency because there is the possibility of the patient losing their sight and anyone presenting with a severe headache and visual symptoms (blurred vision, loss of vision) must be seen straight away (it could be a stroke) and other things ruled out fast (CT scan, carotid scan etc for a stroke) and steroids started at a high dose immediately. Having done that, a biopsy should be taken of the temporal artery - the one on your temple, near the hairline - as soon as possible to look for the giant cells that give this disease its name. They use that artery because it is easy to get at and is one of the ones affected most. It has to be done asap because once you are taking the high doses of prednisolone the cells start to disappear - and they are the only 100% confirmation that it was GCA. Even then, unless the biopsy is a good inch long and they look at all of it the giant cells may be missed. If you have had GCA, getting off steroids altogether is a slightly different matter from what is the case if you only have had PMR. Some doctors believe it is better for GCA patients to remain on steroids at a very low dose (less than 5mg) for many years, others are happy to allow the patient to get off steroids if they can but be kept a close eye on.
This is why we were so adamant you should try to get to an expert much sooner if you could. Plus, sometimes even 60mg/day is not enough and they need to give the steroids as an infusion to get the inflammation down quickly. However, you seem to be responding and an expert is in the pipeline. But if you feel worse - don't hesitate, get the doc.
all the best,
MrsE
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