What to think?

Hi

I saw the rheumatologist today.

He gave me the results of the biopsy for GCA. Negative.

He said he is 99.5% I don't have it for the following reasons.

At 54 I am too young.

My CRP on admission to hospital was 132 and that was too high to be GCA. The pred took a few days to work. Around four days for the pain to be manageable. He said this didn't sound like GCA. He said it doesn't 'feel' like it. I disagreed with him when he said he wanted me to reduce the pred by 5mgs every few days to 'see what happens'. He revised this to 5mgs a week.

I feel worried about the consultation. What does anyone else think

15 Replies

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  • I can't give you any advice regarding current situation, which I find shocking, but you may find this article of interest, and perhaps your rheumatologist would too. Sounds like he needs to be updated:

    reviewofoptometry.com/artic...

  • Thank you,

    I am going to print it. I feel confused and stressed at the moment. How can he be so confident. I am having bloods taken on 29th December. I didn't go to A and E thinking I had it. I had never heard of it. Obviously I would rather not have a serious long term condition. He took no notice of the sore sensitive scalp and said I could have atypical migraine. Lord knows

  • Hi x I had a 3-4 yr battle and 3 rheumies later got the right diagnosis x gca and pmr x but I am 52 but I do believe I have had this a lot longer due to having jaw claudicationx sorry about spelling x

    If you can get to join a near by help group it would be such a great help . The ladies from my local one got me sorted within two weeks and now I have the best cari g doctor xx good luck darling and don't take no for an answer x

  • I may have to swear but I won't do it in public.

    The biopsy is NOT infallible - if they find giant cells it is 100% certain. if they don't find the cells they say it is negative - but all it means is that they did not find the cells in the bit they looked at. Not the same thing as there not being any. At 54 you are NOT too young. Any rheumy who trots out that chestnut would NOT get my confidence again and I would be looking for someone who reads the international guidelines and research. The age has been over 50 for some time and there is a documented case in a 37 year old male in South Wales - unusual according to some rheumies on 2 counts.

    Pred took 4 days to work? Yes, not unusual, but it dd work. Maybe you should have been given more. And a CRP is TOO HIGH to be GCA? What is he on????

    If the symptoms return as you reduce - because you probably will have to, you will run out of tablets - go to a different hospital.

    Where are you?

  • I live in the U.K. In Hertfordshire. He said he will do a telephone consultation with me on 11th January. I feel really quite wobbly this evening.

    Don't want to monopolise the group with my situation though

  • It's not monopolising the group! There have been a couple of people in your neck of the woods who got strange rheumies (lot of other places too but that's by the by!)

    Is private an option?

  • Private is an option.

    I have medical insurance. I saw a regumatologist when I was in hospital who said there was no benefit gong. Private at that time as he was there at the start of my journey and will be there at the end. Famous last words after waiting a months to be seen in clinic and late cancellation of appointment. Followed by seeing this rheumy today. I will contact my insurer In the morning. Thank you for your reply

  • drrahughesrheumatologyltd.com/

    Your first rheumy was right - but it was then up to him to make sure you saw him. It might not be GCA - but not for the reasons the numpty today cited.

  • I will get on this in the morning.

    I am not disappointed that he feels I don't have GCA. In my mind I feel I need to say this. I will be delighted if I don't and ever thankful to the members of this group for the support I have received since joining. I worry about 'waiting to see what happens'. I'm not a natural risk taker. Russian roulette isn't my thing. Will feedback when I have some more info and thank you once again

  • Heavens no - no-one in their right mind would rejoice at a GCA diagnosis. BUT - like you, Russian roulette is not my thing either! I would have accepted his opinion - were it not predicated on totally crackers reasoning! But at present you have one rheumy (who saw you at the time) feeling there was enough evidence to treat you as GCA and one who didn't expressing some somewhat skewed opinions.

    I do hope it isn't GCA - but if it is, I hope you get the right treatment. Because the alternative is not a pleasant thought.

  • I first had symptoms at 52, but it took longer to be diagnosed with PMR. Surely the point is with a CRP that high all is not well. When I finally saw a rheumatologist , he referred me for a PET scan to pinpoint the inflammation in my body and check that my aorta and large vessels were clear.

    Experience has taught me with Doctors to try and get the point across quickly and don't burden them with more than 3 questions. Writing bullet points down helps me.

    I would want to know

    What to do over the Christmas period if I get worse as I reduce the Prednisilone?

    What does he think is wrong if it isn't PMR ?

    Do I need more tests e.g. a PET scan?

    You of course will have a different set of priorities .

    Good luck

    Sallyaches

  • I thought the biopsy approach, albeit hit and miss, was used in the absence of conclusive information in other areas such as inflammation markers and in my own situation my ESR reading of 124 was enough for my rheumatologist to be convinced!

    On the age assessment the NHS website says that GCA affects people over 50 so I do not understand the age dismissal.

    I hope you do not have GCA but from the research I have done in the past six months it seems many people do not always get early or accurate diagnosis and often have to be persistent with clinicians. Good luck!

  • I agree with PMRPro (as always, wise words). Do not "wait and see what happens". That is a ridiculous suggestion from the Rheumy.

    I too was told by a leading Rheumatologist and GCA expert that I did not have GCA because of a negative biopsy... he was wrong. Months later with continued pain I had a PETCT they found Large Vessel Vasculitis in my Aorta, Subclavian and Axillary arteries, but like you I had head pains and my CRP was "only" 25.

    Please get second opinion very soon. Good luck. X x

  • I don't understand why you have been told your CRP was too high for GCA, mine was a frightening 189 and ESR 130 I was put on 40mgms immediately. My temporal artery biopsy was definitely positive. Its such a complex illness and diagnosis is always a combination of blood tests and clinical symptoms.

    I am sure the professionals will advise

  • I had a similar experience. I was 52 last June (now 53) when I began having a sudden and severe headache around my temporal region on my left side. I waited for awhile and tried all types of home medications, which did not work and the headache worsened. Then the other symptoms began, including: bulging temporal arteries, jaw claudication, scalp tenderness, and vision involvement. My Internist suspect GCA/TA, but due to my age, and not having a high ESR or CRP, sent me to a neurologist. The neurologist did MRIs on both my brain and neck to rule out stroke, tumors, and MS, which is more likely for my age, but did no tests to rule out GCA. The MRIs were negative, the headaches and other symptoms were continual and worsening even with additional medications. By early July, they had tried everything, and then, finally, they prescribed a methylprednisolone taper pack. The steroid was low dosage and finally by the forth day, the headache started to decrease, but then the 7-day taper pack was finished. I went back to the Internist (not the neurologist since he seemed to be in denial that it could be GCA or anything other than the typical ailments for a 50 year old) when the headaches were unbearable and vision was worsening. The Internist sent me to Rheumatologist who immediately put me on 32 mg of methylpednisolone (16mg am/16mg pm) and ordered a biopsy, which took place 9 -10 days later. As soon as I started taking the steroid, the headaches were decreasing as the hours went on, and were pretty much gone within a day. The biopsy was negative, so the Rheumatologist tapered me down by half each week. At this point I had been on the 32 mg for only a month. I had little problem tapering, it took a month (32 to 16 to 8 to 4 for a week each). Thankfully, the headaches are gone, but have had a few other issues still relating to vision (occasional, but not as bad), a fever, very sore shoulders and hips (which I did not have previously) and problems with hot flashes only when I lay on my left side (had this symptom prior and during the steroid treatment). I am not convinced that this was or was not something related to some form of vasculitis - GCA in particular and am a bit concerned about PMR, but I am thrilled that the headaches have not returned. I will deal with the shoulder and hip stiffness until it is unbearable. I figure, either this will go away or get worse and if it gets worse they may be able to diagnose me. I was very athletic and in great physical health prior to this, so I often wonder if maybe the results for vasculitis are might skewed for younger, healthier people than the typical patient: 70 year old woman. I also wonder if doing a biopsy that long after steroids may have skewed the test. At this point, I am just happy to be headache free, and steroid free (and of also to not be on the low-sodium diet for the steroids). If they ever figure out what I have/had, I will update hopefully to help others. Do not be afraid of the taper, if the symptoms get worse you can always go back up. My only concern in your case is that your blood work supports the diagnosis more than it did mine. Good luck and I hope that you are well soon.

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