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4,369 Posts
Hi everyone!
Well I went to see my Immunologist yesterday which lasted 30 mins. On his part he only asked a few questions and gave me my bloods form to get done and issued a referral to a Gastro Consultant so that I can have a camera exam. The new Anti-inflammitories prescribed Etoricoxib 60mg (which I later found I could not get hold of as a withdrawn drug), they suggested to try Arthrotec 75 as an alternative (luckily I was not pregnant before taking this as I was never informed of risks, although I read info after and the enclosed sheet. An increase in Plaq. from 200mg per day to 600mg over 2 days increasing after a month the 400mg per day! Said he did not need a urine sample for testing.
Bloods taken to be tested for:
FBC
ESR
Lupus anticoagulant
Liver
Bone
Thyroid
Renal (Na, K, Creat, Urea)
Sirum Iron
Ferritin
Cardiolipin
C3/C4
ds DNA
I did not manage to get much said in the 30 minutes!!! I told him no change on Plaq and asked him why I was on a low dose! He answered that in UK they start on 200mg and that is usually enough and only in USA do they start on 400mg!!!!! He was surprised that I had no change with Plaq. except of course worse symptoms and acne to boot! He asked how I got on with the Pred before Christmas and I told him it did not help except to give me the side effects!
B12 - told him GP results were borderline low. He said its not necessary to test for another 12 months and signs of problems with deficiency do not appear for a very long time!!
I did get in that I recently had Shingles on one side of head then followed by a similar burning sentation across another part of my head that could not be related to shinlges - he did note in file but no further comment!
I asked about ance medication and how it interacted with Plaq. as my GP wanted more specialist advice. He said no anitibiotics for now just to try a topical cream which he will advise GP on.
I did not have time to bring up: Swollen painfull glands, under arm pain when exhailing out, funny bending fingers, jumping middle fingers, thumb jerks. More swelling/heat/stiffness in hands. Is my back pain a SLE problem and why have I not had an x-ray in 20 years! Have I been tested for Raynauds and Sjogerns as I have the symptoms/signs!
All in all I know this was not a good appointment as I need more than just bloodwork testing and more care for other problems that have existed before my diagnoses of SLE. The Immunologist still never explained what Lupus was and what to expect! My old Rhuem will not see me as he does not want to tread no the toes of the Immunologist!
I am just glad that this site is hear to provide useful information and support!
Thanks everyone!
Love Lesley
Well I went to see my Immunologist yesterday which lasted 30 mins. On his part he only asked a few questions and gave me my bloods form to get done and issued a referral to a Gastro Consultant so that I can have a camera exam. The new Anti-inflammitories prescribed Etoricoxib 60mg (which I later found I could not get hold of as a withdrawn drug), they suggested to try Arthrotec 75 as an alternative (luckily I was not pregnant before taking this as I was never informed of risks, although I read info after and the enclosed sheet. An increase in Plaq. from 200mg per day to 600mg over 2 days increasing after a month the 400mg per day! Said he did not need a urine sample for testing.
Bloods taken to be tested for:
FBC
ESR
Lupus anticoagulant
Liver
Bone
Thyroid
Renal (Na, K, Creat, Urea)
Sirum Iron
Ferritin
Cardiolipin
C3/C4
ds DNA
I did not manage to get much said in the 30 minutes!!! I told him no change on Plaq and asked him why I was on a low dose! He answered that in UK they start on 200mg and that is usually enough and only in USA do they start on 400mg!!!!! He was surprised that I had no change with Plaq. except of course worse symptoms and acne to boot! He asked how I got on with the Pred before Christmas and I told him it did not help except to give me the side effects!
B12 - told him GP results were borderline low. He said its not necessary to test for another 12 months and signs of problems with deficiency do not appear for a very long time!!
I did get in that I recently had Shingles on one side of head then followed by a similar burning sentation across another part of my head that could not be related to shinlges - he did note in file but no further comment!
I asked about ance medication and how it interacted with Plaq. as my GP wanted more specialist advice. He said no anitibiotics for now just to try a topical cream which he will advise GP on.
I did not have time to bring up: Swollen painfull glands, under arm pain when exhailing out, funny bending fingers, jumping middle fingers, thumb jerks. More swelling/heat/stiffness in hands. Is my back pain a SLE problem and why have I not had an x-ray in 20 years! Have I been tested for Raynauds and Sjogerns as I have the symptoms/signs!
All in all I know this was not a good appointment as I need more than just bloodwork testing and more care for other problems that have existed before my diagnoses of SLE. The Immunologist still never explained what Lupus was and what to expect! My old Rhuem will not see me as he does not want to tread no the toes of the Immunologist!
I am just glad that this site is hear to provide useful information and support!
Thanks everyone!
Love Lesley