ESR and CRP result

[Poppylop]

Hi all, just a quick update, I'm still no further forward in getting my rheumatologist appointment, they didn't ring me back again, but the GP phoned me today to give me the results of my blood test yesterday, my ESR when I was diagnosed on 2nd Sept was 60, it has now dropped to 5, he said my normal is 15-19 as I have ulcerative colitis, my CRP on2nd was 84.2 it is now 2.5. He was really pleased with these results, as it's such a big drop, I asked if I could start to lower the dose, but again he is reluctant to until a rheumatologist has said so, I explained that my appointment has been cancelled and someone was supposed to be in touch. He said he would email them there and then to see what he could sort out, he suspects that I don't have GCA as he said he would not expect such a huge drop in my levels of i did have it, but who knows , I'm really hoping i hear back from him soon, I'm desperate to lower the dose because of these horrid side effects. Me and my husband are off to Bournemouth after work tomorrow for three days, I'm looking forward to the break but I am worried about feeling unwell on the train as it's the evenings that I feel worse. Also I booked an eye appointment yesterday just because I'm worried incase i do have GCA, Specsavers in Banbury now have a scanner that is the equivalent to a hospital MRI scanner, it cost £10 to have it done but the chap said it can pick up so much more than a normal eye test , I almost bit his hand off when he asked if I wanted it, I'm not sure if all Specsavers have one but it's something to look into x

[DorsetLady PMRGCAuk volunteer]

Hi,

“he suspects that I don't have GCA as he said he would not expect such a huge drop in my levels of i did have it,”.

Not sure I totally agree with him on that, the drop is due to the steroids doing what they are supposed to - controlling the inflammation.

At the dose you are on, the side effects are pretty grotty, but they will diminish as your body gets used to the Pred, and you begin to reduce. But until it has been proven whether you have GCA or not you need to be at that dose to protect your eyesight.

Just relax as much as you can and enjoy your break.

[Labradorite]

Hi

I agree with Dorset Lady’s view that the large drop in ESR and CRP levels is due to prednisolone reducing inflammation, which is to be expected in cases of GCA. I have had GCA and at the beginning my ESR and CRP levels were 63 and 106, respectively. I was started on a daily dose of 60mg of prednisolone, and after two weeks – when I was seen by a hospital rheumatologist – my ESR was 2 and CRP 2.3. The rheumatologist confirmed a GCA diagnosis and I began a slow taper of prednisolone, the next step being 40mg of prednisolone per day for one week.

I hope you get your appointment soon. Meanwhile enjoy the break in Bournemouth and take things easy. I suggest that if you haven’t heard anything when you get back you call the Rheumatology Clinic again – there may be a nurses’ helpline.

[ClarkB]

I email my Rheumatologist and as it’s advice I require, rather than a physical examination, I have found that he responds quite quickly. It depends on whether or not you require a face to face appointment.

[Poppylop in reply to ClarkB]

Hi ClarkB, I was wondering whether to do that because there is an email address on my letter, I told the gp the other day that I might, he said to let him try first, he was writing the email on friday ,he's supposed to get back to me as soon as he responds, if not then I think I will.

[ClarkB in reply to Poppylop]

There was an email address on my letter too. I rang the Rheumatologist’s secretary, and asked if I could email, instead of phone, and she said that he preferred it. I feel that I can cover my queries, whereas on the phone I forget what to ask and his reply! I can also refer back to our emails. I didn’t consult my doctor as I am not able to see a specific one., and the waiting time is too long. When I was going on holiday, I asked if I should up my dose and he replied straight away. I also imagine it depends on the Rheumatologist, as mine is pretty easygoing.

[Poppylop in reply to ClarkB]

I havn't even met mine yet, I was told i would see one within 48 hours of being diagnosed with possible GCR but still waiting 😣

[ClarkB in reply to Poppylop]

I had a 3 month wait, despite request of urgent. I saw a Rheumatologist privately, three days later. I was put on steroids immediately. It cost £200, but I was able to claim on my health insurance. I would have paid anyway, for treatment and peace of mind. My own GP did not want to prescribe steroids until I saw a Rheumatologist. Afterwards my Rheumatologist, who also worked for the NHS, told me to see him there for a follow up after that initial private consultation.

[Carrollee]

The Witney one has one. Is that any closer to you or are you a Banburyite 🤗 cc

[Poppylop]

I'm a Banburyite 😁x