Jeanie

[Jeanmh]

In my last post forgot to add my Dr said I dont need any more blood test now unless I get any problem with my head or my eyes is this right Ater reading some of people's post just want to resure my self

[SheffieldJane]

Blood tests don't tell the whole story anyway, sometimes they remain normal throughout when symptoms are very active. Do you have PMR or GCA?

If you are worried you can always ask for your bloods to be done, if you are feeling worse for instance. The can show inflammation levels rising in some people.

[Jeanmh in reply to SheffieldJane]

Thank you for your advice Will take note it's GCA what I have

[DorsetLady PMRGCAuk volunteer]

Early days I had mine done monthly. After that every couple of months- mainly for my own benefit really. As SJ says symptoms are the key to go by with the bloods as confirmation if things aren't right.

[Jeanmh in reply to DorsetLady]

Thank you

[Wbednell in reply to DorsetLady]

Well put Dorset lady we get Dr that often don't really know much about GCA

[DorsetLady PMRGCAuk volunteer in reply to Wbednell]

'Fraid I know that only too well! But after (very late) diagnosis she soon learnt a lot more about it!

[piglette]

I feel that having regular blood tests monitors how things are going. Things like full blood test, u&e etc should also be taken every few months besides ESR and CRP to ensure that the drugs are not affecting you. Also a glucose test should be taken every so often and possibly a check on vit D.

[Jeanmh]

Hi how do you tell the Dr when she is telling me I dont need any more blood test only if I start with head aches again or my eyes go funny or I'm not well she said the last blood test was fine

[Rugger in reply to Jeanmh]

Speak to the Practice Nurse and see if she'll agree to do the blood test. The nurses are generally sympathetic and have a bit more time than the doctors in their 'well person' sessions etc.

I'm fortunate that my GP says he'd like to see me and have blood tests about every 2 months.

[Rugger in reply to Rugger]

Yesterday's test results: ESR down from 33 to 11 (was 54 in July) and CRP down from 6 to 3 (was 14 in July). Achieved this by increasing pred from 4mg to 10mg, so now it's onwards and downwards! Oh, and my symptoms are better - pain in my joints from bursitis virtually gone, so you could say I didn't need the test, but it's positive reinforcement and a morale booster. We need those, with these conditions.

[DorsetLady PMRGCAuk volunteer in reply to Jeanmh]

As Rugger suggests talk to Practice nurse, explain your situation and say you'd like to have blood tests more regularly for your own peace of mind, and as a way of managing your illness better yourself. Don't say anything about Dr's comments.

Sometimes they have to check with Dr, but on some things they have the authority to make certain decisions - depends on surgery - but it's with a try!

[piglette]

I agree it is difficult, as they normally don't like to be told! I just book my blood tests myself and so far no one has said anything, but it may be that my surgery are just lazy.

[Jackoh]

I'd just add to be careful if you have blood tests done at the surgery. In fact at my surgery now you can obtain the request form but not have the actual test done there - you have to go to the nearest hospital blood test department. When I did have my blood sample taken at the surgery though I found out that there was a huge gap between my blood being taken and it being sent off to the lab at the hospital to be tested. In the case of the ESR test I believe I have read on here, that it has to be taken and tested within I think 4hours? If it's taken and tested at the GP surgery all well and good. If the sample hangs about all day at the surgery and then is sent by bag to the hospital to be tested the next day then I believe the ESR figure is not accurate. I think I've read this from you PMRpro a long time ago but do correct me if I've got this wrong.

[piglette]

Hi jackoh, I am really surprised that your surgery did not get bloods picked up to go to the lab very quickly. At our surgery a man with a van turns up at least daily to pick up blood tests. As you say tests need to be done fairly quickly while your blood is fresh!!

[tgca]

I have an unofficial agreement with my GP for a full blood count plus ESR and CRP every 3 months as I like to keep an eye on it all... I think some surgeries are a bit too busy counting the pennies?!

[Jeanmh]

Hi tgca Totally agree with you but with all the cut backs it is getting more scary for people who have these not much heard about diseases I'm so glad there are sites like this to help us . I will ask my Dr If and when I see her if I can have one every so often it does put you at ease doesn't it