Not a "typical case".
Posted , 6 users are following.
Having been treated but never diagnosed for sure with G.C.A. had PET/CT scan, nerve conduction tests for numb feet, Bone marrow test for high platelets and white blood cells, all of which were negative, I asked my G.P. to be referred to a specialist as my blood markers have never "normalised". I am on 20mg. of Pred. and am now told that I am anaemic, I saw my Rheum. who is really nice but baffled, and am now reducjng to 17.5mg. which didn't work before, but I 'll try harder, my G.P. seemed to think that I was casting aspersions on my Rheum. about the referral which I wasn't, but not being a typical case, I am now lost!
0 likes, 12 replies
snapperblue catherine34621
Posted
Hi Catherine: It would help if you'd give a timeline- how long have you been on prednisone? Do you have PMR or are you being treated for GCA? What symptoms do you have? Thanks!
EileenH catherine34621
Posted
As snappperblue says - knowing the time line would be helpful. And what your original symptoms were. For example, if you have had a PET/CT scan that SHOULD show up inflammation outside the head (the brain takes up loads of the contrast anyway and it swamps what can be seen there) - BUT if it was done while you were still on pred then that would have interfered with the result by masking inflammation. So was that done before pred or later? If the blood tests showing raised platelets and white cells were done while you were on pred - that can cause it without anything nastier being the case.
If ESR and CRP didn't fall while on pred, even if they didn't normalise, then that suggests it is something besides PMR/GCA. How anaemic? That is typical of many autoimmune disorders. And your rheumy can't investigate that properly while you are on pred.
It is something we meet every so often - patients were told by a GP they have PMR because the symptoms fit and then it doesn't respond as expected. The signs and symptoms of PMR are not the disease itself - they are the result of an underlying illness. In the case of the PMR/GCA we discuss here it is an autoimmune vasculitis (inflamed blood vessels) but there are several other possible causes. If the GP didn't investigate thoroughly before pred, then it is difficult to do it until the dose has been reduced. It may be uncomfortable but could bring an answer.
catherine34621 EileenH
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EileenH catherine34621
Posted
catherine34621 EileenH
Posted
No I didn't Eileen, he said he wasn't empowered to refer me as all Rheum. are specialists in PMR and GCA. This is the same one who thought my bloods were not too bad when one of them was 52. I told him I wasn't satisfied, and he told me to "give it time".
daniel08939 catherine34621
Posted
My experience with rheumatologists is they have great difficulty diagnosing pmr. It took mine six months to come to that conclusion and he only did that because another doctor put me on prednisone and it worked.
After being off prednisone and feeling fine for three years I got the symptoms again and the same rheumatologist told me you can only get pmr once. I got a second opinion and one prednisone pill made the symtoms go away. You could call it a flairup or the return of pmr.
EileenH catherine34621
Posted
If you are in England, he is talkiing utter rubbish and I would take this link to the senior doctor in the practice or the practice manager if the GP himself doesn't climb down when he is shown it:
http://www.nhs.uk/NHSEngland/AboutNHSservices/NHShospitals/Pages/HospitalsSummary.aspx#choice
It says:
"If you are referred for your first outpatient appointment then in most cases you have the right to choose which hospital in England to go to. This will include many private and NHS hospitals that provide services to the NHS.
You are also able to choose which consultant-led team will be in charge of your treatment, as long as that team provides the treatment you require.
Therefore, if you wish to be treated by a particular consultant for a procedure, you can choose to have your first outpatient appointment at the hospital where the consultant works, and to be treated by that consultant's team – but this doesn't necessarily mean you'll be seen by the consultant themselves.
This choice is a legal right, if you are not offered a choice at the point of referral, ask your doctor why and say that you wish to go through your options. If you are still not offered, or refused, a choice, contact your local CCG."
The NHS is in a mess - but it isn't that bad yet I don't think. Apart from some doctors who aren't aware of patients' rights!
catherine34621 EileenH
Posted
When I was referred in 2015 for suspected PMR, I chose the Hospital closest to where I live and was given a Consultant Rheum. I never saw this person as I developed the GCA symptoms and was then seen by a Registrar within two days (for which I am grateful) I wasn't informed that I could choose the Rheum. I should have looked into it, (my own fault) My latest G.P. (they are nearly all part time at my surgery now) will only give me a weeks Pred. at a time, so no sooner have I got one packet, I have to order another, he also said I should ring the Rheum. as he wasn't happy that I was taking 20mg. of steroids. I related this to the Rheum. and she very politely said that the Rheum. are the experts in this and she gave me the Pred. I needed. G.Ps versus Rheum. who are the experts?
EileenH catherine34621
Posted
I would report that GP - that is disgusting and he is costing the NHS a fortune. Every time that single packet is dispensed there is a dispensing fee paid to the pharmacy which is the same whether you have 20 packs on the script or just one - you aren't going to be off pred in a hurry and it is NOTHING to do with him if that is what the rheumy says you need,
Somewhere on that site is information about the way to go about contesting GPs! I know it can be very difficult to switch at present - there aren't enough GPs anyway but the senior partner or practice manager need to know.
There are hopeless rheumies - but it is far worse when you get a hopeless GP as it is difficult to get away from them.
track catherine34621
Posted
Catherine, so glad I found someone on this Forum who has similar problems to myself, sorry it is under these circumstances though.
I have had PMR for 2 years now and GCA, my PMR has settled down quite extensively also my GCA, both ESR and CRP quite low now, though taken almost 2 years for this to happen. I am now down to taking 5.5mg of Pred daily and my Haemotologist has suggested I do not taper any lower at this point.
I have had numb feet as well for about 13 months, though not anaemic. I have had Full blood counts for well over a year now, because like you my Platelets have been high but now lower and also white cells high along with Neutrophils, Monocytes etc etc. I was referred to a Haemotologist and she said White cells are effected by Prednisone, my Platelets are lower because of my PMR getting better. She did not recommend a bone marrow test, like you had, though she and my GP were worried it could be Myeloma, but have ruled this out now, thank goodness.
I had 24 extra blood tests done 2 weeks ago, I have had the result of 5 of these, 4 were okay, one showed my red cells dying off quickly but being replaced as this happens, my GP could tell me much about this so am waiting to go back to my Haemotologist for all of the results of these 24 tests. I found the Haemot... knew more about PMR than my G.P I was very impressed.
I was never referred to a Rheumy and after hearing all of the bad publicity about them re PMR, I am quite happy I wasn't.
Maybe you need to see a Haemotologist (blood Specialist) re your abnormal blood tests.
I will let you know how my pending test results turned out.
I am in Australia.
Track
snapperblue track
Posted
I don't think you should generalize about rheumatologists based on comments here. Just like GPs or specialists in any field, some are great, some OK, some don't know anything useful about parts of their specialty. They are all individuals.
It sounds like you have more going on than PMR/GCA. Who knows? The rheumatologist you see might be the one who can recognze the pattern in your complex autoimmune/blood/numbness problems.
catherine34621 track
Posted