Advice needed: Is this PMR / GCA?
Posted , 10 users are following.
Hello everyone
My health has been poor for the last two or three years. Had Breast Cancer and Thyroid Cancer 5 years ago. Successfully treated but breast cancer meds and fine tuning of thyroid meds took its toll.
For just over two years have had fatigue, pain in upper arms, shoulders, neck, lower back, hips and shins. Two years ago, they gave me anti depressants and said the pain was down to depression (NO - I was getting depressed because of pain and fatigue - but doctors don't understand about chickens and eggs.) No improvement. Frequent headaches which I felt were linked to pain. ie the worse the headache the more intense the pain - everywhere. I kept trying to describe it as like having migraine pain all over but just got puzzled looks and more ADs.
In March, fatigue got worse - falling asleep in supermarket queues and other amazing feats. Also started to lose weight as appetite lessened. Not too upset as needed to drop some pounds as AD's have piled on the weight (combined with lack of activity). Have lost 14 lbs since then and same health probs continued.
In May had an awful virus which lasted two weeks. GP did alot of bloods etc - again. Have a vampire type relationship with the nurse in our surgery. All ok except ESR was 60. Things got worse and worse after that. Pain excruciating in all same places and daily headaches since then. GP thinks fibro and cfs and has referred me to a consultant who knows about these things. Appt a week on Tuesday. I suggested PMR and he did ESR and CRP again and they were 'normal' (CRP 4 and ESR 25). He more or less ruled out that as inflammatory markers not high. He also said PMR gets better as day progresses. Still on the fibro / cfs route.
In the meantime, oncologists had a panic that caner may have recurred and did an MRI of spine, CT of head (nothing there - I have a so-funny husband), and CT. All clear. No nasties but no answers either.
I have an osteoarthritic knee and await an op for that. Had a HC injection last summer and to my surprise felt so much better pain wise.
I have been so ill since having this virus. Today is a 'good day' - first for months with no headache (Yippee) but I know that if I do much I will pay tomorrow. This makes me question my suspicion of PMR. Does that have 'good days' or is every day hell.
Intend to put my case to do I see next week but any advice you can give me will be gratefully received.
Well done if you've kept up with this ridiculously long post 
0 likes, 21 replies
Daniel1143 Mazzamo64
Posted
I definitely kept up with your long post. If your doctor told you you couldn't be PMR because your markers are not high, you should find a new doctor. What you will learn from this site and from numerous other online resources is that a significant percentage of those with PMR have markers which remain in the "normal" range. I am one of those people. 18 months with PMR and my blood markers have never been out of the normal range.
Mazzamo64 Daniel1143
Posted
Thanks for your reply Daniel. I have read that not all PMR sufferers have raised markers but my GP won't have it. Hope the consultant next week can do more joined-up thinking
Btw, do you have GA too? What does of pred are you on for the PMR? Sorry for all the questions!
Daniel1143 Mazzamo64
Posted
Politely, your GP is wrong. And (excuse my abuse of the English language) if he or she digs their heels in, they are wronger still.
I started out at 20mg. Seems the general range is 15-20mg. I do not have GA, though have read that many folks with GA are prescribed upwards of 60mg out of the gate. Prednisone is a magic pill, though burdened like so many drugs with side effects.
You need to find a good Rheumatologist. In the interim, you can learn a lot about PMR by reading dozens of qualified articles on the disease which are readily available online. You'll know after a very hort while whehter the description of the disease matches your experience to date. Were I a gambler (I am not), I would find PMR a very likely culprit for what you've experienced. Perhaps your GP will prescribe for you 20mg of Prednisone for three or four days as an experiment. One of the ways Rheumys confirm their diagnosis of PMR is how your body reacts to Prednisone. If you feel suddenly better - markedly better in as little as 24-36 hours, its quite likely the Prednisone is successfully attacking an auto-immune inflammatory disorder. PMR.
Be patient on this site. Eventually, EileenH will chime in. Our resident Oracle.
JanSP Mazzamo64
Posted
It seems impossible to compare markers from one case to another. My original SED rate seven years ago when I was diagnosed with GCA (with a positive biopsy) was 86. When I'm not having a flare it stays between 2 and 4. I also have or had PMR. I just reduced to 7.5 mg pred (from 80 mg)along with MTX and Actemra.I don't know how slow I should go since I've never been on Actemra before. One flare was at 1 mg pred and the others were after stopping for a few months. Good luck with your situation. Jan
tina-uk_cwall Mazzamo64
Posted
Mazzamo, you haven't said if your GP has tried you on a short course of Preds. There are many patients that display low inflamation markers and symptoms that are perhaps a tad outside the established "box", eg younger age. But it's what type of drug you are prescribed that responds to the pain that determines if a disgnosis of PMR is plausible. For eg, if these pains are down to fibromyalgia the steriods will not reduce any of the pain as fibro pain is not caused by inflamation whereas PMR pain is caused by inflamation and so will respond to Steriods very quickly.
I'm glad you have an appointmentn with your DR this week, ask him to at the very least give you a stort course of preds. (2 weeks), if you respond within the 2 weeks (normally with 24 hours) to preds (15mgs daily) and then once the course is stopped all the pain returns then that could suggest a diagnosis of PMR. if your DR refuses this request then ask for a second opinion with a rheumatoligist.
All the best, Tina
EileenH Mazzamo64
Posted
YOu certainly could well have some form of autoimmune disorder even if it is not PMR although the symptoms do fit there.
You need a better specialist (not to mention GP but that is by the by). In 20% or so of PMR patients there are no raised acute phase markers (the ESR and CRP). If you have a good day and do too much the next day will be worse - that applies whether you are on pred or not. PMR sometmes gets better over the day - sometimes it doesn't. Everyone is a bit different.
Your response to the HC injection is suspiciously suggestive of PMR - often patients are diagnosed because they realise their aches and pains responded positively to a steroid injection for something else.
I am, however, appalled that such unexplained weight loss hasn't triggered far more investigation. PMR can be a symptoms of many things - it isn't the disease - and cancer and other nasties are amongst the possibilities.
Mazzamo64 EileenH
Posted
Thank you everyone for your support and input. I feeel quite distraught. I have just got back from an appt with a General Physician (Infectious Diseases)is whose speciality is Fibro / Cfs (referred by GP).
He is adamant that the symptoms I'm presenting are Fibro / Cfs although I told him about weight loss, jaw pain, severe daily headache, upper arm and shoulder pain etc etc. He was completely tunnel visioned and said that markers were always raised in PMR. Worse still he could offer no real advice. Acknowledged that I was in too much pain to walk and said to 'pace myself' in my social activities as talking to people is very tiring. (Not as bloody tiring as talking to him for an hour.) Apparently, latest 'research' dictates that the use of any meds at all (eg ADs) is ounter productive. He said he felt very sorry for me but that's the way it was. I asked him outright, 3 times if he would let me try Pred for 3 times as a diagnostic tool. Refused. God knows where I go from here. I can't stand much more. Currently looking for a Rheumatologist who may take another approach. Also considering buying pred on internet.
Any advice or info welcome. I've reached end of my rope.
Daniel1143 Mazzamo64
Posted
"He was completely tunnel visioned and said that markers were always raised in PMR."
Well, he's simply wrong and has not read up or kept up on the state of the art in auto immune diseases. Dozens of us have PMR and show no increase in the markers. My CRP is low; my Sed rate is low. I have PMR.
Find a a new doctor.
Mazzamo64 Daniel1143
Posted
Thank you Daniel for your response. Yesterday afternoon I phoned my very supportive GP and told him I wasn't happy with the consultation he'd referred me to. After some discussion, he agreed to give me a month's trial of Pred at 15 mg a day (Enteric coated because I have a chaotic stomach). One thing he said though did flag up a query in my mind. He said that anyone -with or without PMR - would have a positive response to low dose Pred. Whether he meant just initially I don't know. It was my understanding that Pred was used as a diagnostic tool, in as much as fibro pain would not respond. Can you help me with that? Perhaps Eileen could advise too?
I took the Pred with breakfast at 9.00 this morning. It's now 10.30 am and pain has lifted considerably, particularly headache. Taking Pred does concern me because I have osteoporosis for which I take just Calcium and Vit D (as I just can't tolerate the bisphoshonate meds). Anyway, one step at a time. Thank you for all your advice and responses. Ever grateful x
Mazzamo64
Posted
Sorry - that should say a week's trial.
tina-uk_cwall Mazzamo64
Posted
Hello Mazzamo, there are many patients whose blood tests, CRP and ESR come back well within the normal range yet still display all the classic symptoms of PMR. Because our condition is an auto immune condition that thinks our large muscles and joints are poorly, the immune system rushes to these areas and does its 'stuff' and it's thus process that causes the inflamation that in turn causes the stiffness and pain. Presently there is only one drug that can successfully reduce inflamation and that is steriods, prednisolone. So, if we are given this drug and we respond to it within a very short time, for me I was walking, sitting, reaching unaided within about 3 hours, for others a bit longer. My rheumy said to me that if there was no significant improvement within 3 days go contact him, but as I said the improvement in my case was dramatic.
There are also ryts of medical illnesses that also display the same symptoms but they are not inflamation related, therefore, if you were to take preds they would have no effect as preds are an anti inflammatory drug. That's why if your pain was due to fibromyalgia preds would have no effect as fibromyalgia pain us not caused by inflamation.
So, this is what your dr means by having a positive response to low doses of preds, if they work then you almost certainly have PMR and if they don't then you almost certainly do not.
i wish you all the best. Regards, tina
Mazzamo64 tina-uk_cwall
Posted
Thank you for responding Tina. I got confused because GP was saying that low dose pred would def lift mood and ease pain in anybody - whether they had PMR or not.
My initial euphoria at failing some relief after 90 mins was short lived and clearly in my imagaination. Feel in great pain now with usual head and neck pain etc.
Can anyone give me a clue about how long 'kick in' usually takes. One poster said she felt better after an hour. This gave me false hope. Lol.
My middle name is 'impatient' but after two years I think I'm entitled to winge a bit
Tastyron Mazzamo64
Posted
I took my first dose of Pred at about 5 pm and thought I was feeling a bit better at 11 pm but not much. Got up the next morning with that "miracle" gift of movement. I can't say that I have been pain free but as long as I can move and keep this level of pain and still manage to reduce my dose then I'm reasonably happy. If you have PMR then you will find a dose that suits you. We are all different.
Anhaga Mazzamo64
Posted
When you feel better, and hopefully this will be quite definite within the next three days or so, please be careful not to overdo things. You'll want to be doing all the stuff you couldn't get to while you were in the acute phase of PMR (if that's what you have). Just be aware that pred damps down the inflammation, it's making you feel better by treating the symptoms, but it isn't a cure. We all have to wait for the underlying auto-immune disorder to burn itself out or go into remission. We can help that process along by living almost ridiculously healthily, but there's no cure as such.
I do hope by tomorrow or the next day you'll be able to post that you are feeling ever so much better. You may find headaches continue. I think that is a common thing with pred. I was concerned so went to my very well informed ophthalmologist for a check up re both GCA and raised ocular pressure. Mind put to rest regarding former, had to be closely monitored for possible pred-induced glaucoma for a few months, but normal, gradual reduction in pred dose and that side effect has gone away - as have the extra headaches.
Mazzamo64 Anhaga
Posted
Hi folks. Thanks so muh for your replies. Have been in bed all pm with headache worse than ever and violent stomach ache / vomiting / reflux - in spite of having EC tabs and Omeprazole. Told my husband I was throwing in the towel and taking no more. Then my dear sister rang to see how I was. She is a nurse practitioner. She interrogated me (as usual!) and said you cant have reflux / stomach pain with EC coated as they are gastric resistant and absorbed in intestine. She then reminded me that I had sucessfully weaned myself off Omeprazole 6 months ago because they gave me stomach ache, headache and diarrhoea. She told me to continue and leave the Omeprazole and be more patient. PS She is my little sister not my big sister. Lol.
Anhaga Mazzamo64
Posted
It's a puzzle, isn't it, trying to figure out what is causing what. Maybe you do have the flu. Get well soon!
tina-uk_cwall Mazzamo64
Posted
Mazzamo, I don't take omeprazole, I always take my tablets with 5 tablespoons of low fat yogurt, and almond milk.
EileenH Mazzamo64
Posted
Yup - what I'd say has been said, including your sister's comments. My markers have NEVER been out of single figures even when I couldn't walk!
However - the worsening headache and vomiting do concern me, they are also consistent with GCA and PMR can also be just one part of the clinical symptom picture there and 15mg wouldn't be enough to manage it. But omeprazole can also do it as your sister says so drop it and try ranitidine (Zantac) if you REALLY feel you need something for your stomach. It does almost exactly the same job using a different mechanism - omeprazole is said to have a "better" effect but it isn't a lot of difference and the side-effects are worse. All down to good marketing and gullible GPs...
I had notable physical symptom relief within 6 hours of the first dose - but enteric coated is likely to take far longer as it takes about 7 hours to achieve the maximum blood level whereas ordinary takes just a couple of hours. You are looking for about 70% global improvement in symptoms within a few days to a week - everyone is different - which return in a similar time frame if you stop the moderate dose of pred (15-20mg/day).
I do get annoyed at the doctors who insist that any dose of pred will make you "feel better" - it isn't true for most of us.
Mazzamo64 EileenH
Posted
Hello Eileen and everyone.
Had a superb day yesterday - best for a couple of years. This was Day 3 of the Pred. No pain or stiffness; alert and energetic. In fact, onl yhad about 4/5 hours sleep because I was wide awake. Wow - thought my life was back.
Today - woke up with sore muscles in neck and shoulders followed by a migraine. Not the same intense pain as usual, but very tired and have shelved my plans to go on a short outing this afternoon - just can't do it.
I know my GP said that if it was fibro and not PMR, I'd get an initial 'good' reaction for a couple of days and then go back to square one. So hoping this is not the case.
PS Yesterday was slightly traumatic. Went round for a cup of tea with neighbour. He spotted a cat in the bird bath and ran at full speed into the garden - straight into closed patio door. Oh my. What a shock for him and me.
Anhaga Mazzamo64
Posted
Don't jump to conclusion that it's not PMR yet. Give yourself the full week first. Also, did you do a bit too much yesterday? That will make a difference. No matter how energetic you felt, you still have a serious condition that requires you to be extra kind to yourself. Gentle exercise only for a while, and make sure whatever you do, even socializing with friends, you balance it with an equal amount of rest.
EileenH Mazzamo64
Posted
Anhaga is right - it's a common problem that you feel well and then do too much! Frankly I doubt that you would experience any improvement with pred in fibro - far too many doctors have this delusion that "pred will make anyone feel better"!
Please keep an eye on the headache - PMR can be a precursor to GCA, appearing before the other symptoms which include headache and visual symptoms. If it continues or if you have no real history of migraine you need to go back to the GP. If you have visual symptoms you must go to A&E if you can't see your GP immediately - and I mean immendately. Don't even wait overnight for an appointment - the risk to your sight is too high for that if it is GCA.