Do I really have Pmr/Giant cell?
Posted , 9 users are following.
Hello, Would someone with experience be able to help me with a problem that I have?
Last May I was diagonsed with Pmr/Giant cell and RA all on the same day of seeing a Rheumatologist. I had really bad shoulder, arms neck and shoulder pain. I was given 60mg of prednesolone and they pain was gone within two days. The headache which felt like a "hammer drill" was just on one side. I really do not know if this was Giant cell as I did not have a painful jaw or blurred vision I did have a pain on the side of my head which made wearing glasses uncomfortable. Is this enough symptoms to justify having to have 1500mg of IV and high steriods plus 20mg of Methotrexate.
You see the problem I am having is that all my blood readings are perfectly normal the biopsy (which was done 5 months into steriod treatment) was normal the only so called evidence is a ultrasound that showed slight inflammation on the temple and under the arm and a MR Scan on my hands that show a lot of joint erosion. (Rheumy say RA) , could be Osteoarthritis couldn't?
I am having a real problem coming to terms that I have Giant Cell and RA, I really do think that they have it wrong and that they are covering themselves just in case it "maybe".
In the last three weeks I have stopped the Methotrexate and are coming down very very slowly off the steriods. I feel fine! so could someone please advise me am I doing the right thing. My Rheumy doesn't know that I have done this and really need to find out if they have made a mistake because their diagnosis condemns me to a life time of toxic drugs and bad side effects. I would be really grateful for any advise you could give to me.
0 likes, 17 replies
tina-uk_cwall jenny90481
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you say that you really don't know if you ever had GCA. Ultra sound is sometimes used as a diagnosis tool and you say that the scan revealed some inflamation so perhaps you do have GCA. When you had your blood sample taken and all the results came back normal were you taking all your medication, because if you were for your bloods to come back normal is correct. What it means is that all the medications are doing their job and keeping the inflamation under control. For you to be given a biopsy 5 months after beginning steriod therapy seems highly irregular. I am no Dr but I understand that a biopsy should be done within 2 weeks of any steriod treatment. However the 1500 I've of steriods when first diagnosed dies seem a little excessive but this may sound flippant but that was then and this us now. You have not said what level of prednisolone you are currently on. Mtx I assume has been prescribed for your RA? And that seems to be standard prescription.
GCA is a nasty condition that hopely will eventually burn out and go into remission and it's at that time that hopefully you will come off the preds. However RA is with you forever with the occasional flare. You say that you are reducing the preds, how?
But as pmr gca sufferers we all have to weigh up the pros and cons of the side effects of the meds vs the side effects of the condition. Unfortunately I have no medical training so cannot offer any advise re your present actions. Hopefully one of the more experienced members will reply soon. But to me it sounds as if nothing has been explained to you and it is this lack of knowledge that is causing your worry. All the best, christina
margaret22251 tina-uk_cwall
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tina-uk_cwall margaret22251
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EileenH jenny90481
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The response of your symptoms suggests PMR given the speed and the symptoms you describe are all typical of GCA. The ultrasound is probably more accurate than the biopsy - which is positive in only about half of cases for a whole range of reasons and was almost certainly going to be negative after 5 months of steroids. if they had done the job they are meant to. About 1 in 5 patients with PMR/GCA have normal blood tests. Not all patients have all the symptoms of GCA - some have almost none until they wake up one morning with visual symptoms - and many hundreds of patients lose their sight every year because of this, they were diagnosed too late. GCA should always be a clinical diagnosis (on the basis of symptoms) and treated as a medical emergency (like a heart attack or stroke). Your doctors did that and are to be commended in my opinion.
I don't know a lot about RA - but I am fairly sure that the joint erosion found in RA is different to that seen in OA. The reason you don't see the twisted hands of RA so much these days is because of drugs like methotrexate - they modify the progression of the disease.
I can't make your decision for you but I'm certainly not going to agree you are doing the right thing. I think you are wrong to do this without discussing it with your rheumy. Think about how you would feel if he HADN'T put you on those drugs and you had lost your sight. Of course you feel fine - you are on medication that manages the illnesses you very likely have. Doctors are very reluctant to use them without good reason - and if you feel fine I don't see why you are complaining. I could understand it if you had the severe side effects you say you are afraid of.
You don't say what dose of pred you are on - I assume you are not still on 60mg. By now you should be below 20, possibly below 15mg or even less. You are being very irresponsible in reducing on your own without at least discussing it all. There is no way of anyone here (or anywhere else) being able to say "they" have made a mistake and I do hope you do not find out the hard way that "they" DIDN'T make a mistake by having a flare of either of the illnesses GCA or RA. Letting them out of their cages sometimes makes controlling them again far more difficult - and doing this without at least having the courtesy of talking to your rheumy might make getting future treatment rather embarrassing.
I don't imagine for a minute you will be happy with what I have said - but when I think of the number of patients who struggle to get the care you were given last year I'm afraid I can't say anything any different.
jenny90481 EileenH
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Please do not think that I am not grateful for the treament that I have received from the hospital as may have came across. Sometimes fear and the unknown make you question everything even your own mind.
The truth is I am terrifed! I have never had health problems in my life which I am very lucky so to be told I have this completely knocked me for six.
I really just needed a bit of support and yes I probably do need to be told straight. I have not been able to get a appointment with my rheumy for over three months even though I am supposed to get an appointment ever four weeks so that leaves me on my own with questions and doubts.
I just thought perhaps someone late at night would see I needed a shoulder..
Kind regards Jenny.
margaret22251 jenny90481
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I still get panic attacks, but on recommendation from someone on this forum i bought a book by Dr Claire Weeks, (i think it is the wrong one for me) but i am reading it till i can get another one, and i am trying to understand my body, as like you i was fit and healthy, i ran,swam,walked the 3 peaks and other, did karate for 30 years and taught it, now i am a blutthering idiot all because of pmr, but i know from these ladies, Mrs O and Eileen there is hope, keep going and we are all here for you.
carol16456 margaret22251
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margaret22251 carol16456
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jenny90481 margaret22251
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I to used to be really fit but find I can nolonger do things that I took for granted.
I read all the suffering that others have on this forum and my heart really goes out to all of them.
I know I am in denial but I think 'or hope' it will all go away. I do feel completely alone and affraid at times.
Yes, Eileen is a wonderful lady and helped many people.
Once again Margaret thank you! Jenny.
margaret22251 jenny90481
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margaret22251 EileenH
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thank you
tina-uk_cwall jenny90481
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you say that your diagnosis have caused you to be terrified. Well you are not alone there! When we read about the condition we have, then we read about the medication that will be used to treat it, yes only treat it because the condition will be there long term, bubbling away until it decides it's had enough and burns itself out. We are all initially scared. "What will get us first, the PMR/GCA or the drugs". But as our lives to some degree resume normality those questions go to the back of our minds and we continue to live our life's with a new outlook.
i do not have GCA, luckily, but I have had PMR for about 16 months now. I am only 53 and up until reluctantly going to the drs because I was in so much pain had not visited my gp for over 5 years. I was sporty and danced and was always dashing off here and there. Well, I am now on 9mgs of prednisolone and I know that as the dose decreases so will all the long term side effects of the drug. But no matter how much we hate this drug, the reduction is slow, slow, over long periods. What dose of pred are you now on? Because things will get better. There will come a time, hopefully soon when you will simply get fed up of being scared, that's the time when you will have accepted the conditions you have and the medication that's required to control it, and you will once again just want to get on and live your life as much as you can.
by the way, prednisolone can cause a bit of depression, and that depression does not help our anxiousness, but as the drug dose lessons so do those thoughts too.
come on Jenny, GCA/PMR or RA are not death sentences, hooray!! So as from now, start living!!
all the best, christina
EileenH margaret22251
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I had a niggling sore throat the whole time I had PMR without pred. With pred it eventually faded. PMR/GCA can affect blood vessels in the chest and it is just another symptom. I just accepted it in the end.
margaret22251 EileenH
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snapperblue jenny90481
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Hi Jenny- Christina explains why your blood levels and biopsy may be normal- because you were treating the inflammation with the steroids.
Lack of some of the symptoms does not mean you don’t have GCA. Which symptoms show up- headache, scalp pain, jaw pain, etc.- depends on where the inflammation is.
Once the possibility of CGA has been raised, there is no clear test that will disprove that diagnosis. If a temporal artery biopsy is positive, it means you have GCA/temporal arteritis. However, if the biopsy is negative it does not mean you don’t have it, only that they did not detect the giant cells in the sample of tissue they took. The part of the artery that was sampled may not have the giant cells, when other parts do.
In your case, you had an ultrasound finding of inflammation in the temporal artery. You had pain on the side of your head that made wearing glasses uncomfortable. Both are indicative of GCA in the temporal artery.
As you probably know, 15 to 20% of people with this condition lose all or part of their vision. The first visual symptom may be total loss of vision in one eye and often the other eye follows. Blindness is usually permanent, though prompt IV administration of steroids may save the sight. This is like a stroke- the blood supply to the optic nerve is blocked, (Double vision may occur with an interruption of the blood supply to the muscles that move the eyes.)
People on this forum often run up against doctors who are just plain wrong, compared to the papers in medical journals and the guidelines of medical organizations. However, to be blunt, I don’t see any indication in your post that you are better informed than your doctors!
It sounds like you are guessing that the doctors are too conservative and are reducing the medication without telling them and against their advice. If so it seems to me that you are taking a big chance of having a GCA flare that could have devastating consequences.