Hi . Would be glad of some help please . Reduced from 12mg to 11and a half over a week then down to 11mg . Felt very unwell ,very tired and stiff . Had a niggling pain in my right temple, not there all the time ,just intermittent. Doctor saw me immediately and took a blood sample.and said if I had problems with my vision I had to take 40mg and go straight to a&e
She phoned me the next day to say my blood results were ok for GCA , but I had raised heamaglobin.
I have to have another test on Tuesday.
Does anyone know what this means ?i have looked at Dr Google and it all sounds very scary . Sorry to ramble on . Don't think I can cope with anything else .
Forgot to say I increased my pred back to 12 and a half . Pain and stiffness has gone, and I'm feeling back to normal today
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Manchesterlady
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Next time try just the 1/2mg and give it a chance before trying the other 1/2mg. It may just have been steroid withdrawal "rheumatism". The blood markers are not very reliable while you are still on pred - it is the symptoms that are most important.
What is your haemoglobin level and what was it at diagnosis? It could just be due to the steroids - there is something called anaemia of inflammation or chronic illness so your Hb may have been low for you at diagnosis and has now recovered. My haemoglobin was about 17 for years but is a bit lower now - just because I skied a lot and your level goes up when at altitude.
I so agree with PMRpro. The body really retaliates when you drop even a very small percentage. But if it is very small you will probably recover after a few days. It's good to hear you have recovered so quickly. Go slow! Not easy when you want to be rid of the pesky steroids.
Thank you for your response . I can't remember what my blood count was PMRpro , only that she didn't think I had GCA . Will know more when she does another test .
I do so agree Janel the smallest amount makes such a huge difference.This is such a complicated disease. I would be lost without this wonderful site.
I started with GCA in 2011 please read my blog Sixteenmonths in' fr9m 2015 till june 2016 i was off the steriods then short corse for 3 weeks Inflmation rate up & kindneys function down. Then in March this year my blood test showed inflamation rate up. Started on 60 mgs headachel had gone within 24hors. Was told to do 3 days at 60 then 4 days at 50grms. Another blood test showed inflamation rate normal, kindney function best it has been for ages 68% But i have terrible back ache & ache all over down to 30mgs. On my blood i have Inflamation Markers checked. Kidney Function Vit.B levels.( has injection every 3 month to booste energy level) Also Infection rate. I think the first 3 are add ons to a normal blood test I also live in Manchester Area.
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