Raised Blood levels

[ali5son]

Was at nurse today getting flu jab was asking for results for bone scan and also asked if the had blood results from Rumy appointment few months ago and was shocked that my Esr blood levels 65 previous was 9. This was Rumy who said I wanted me to taper 1mg pred a month. I had contacted surgery for blood results and had a appointment Gp kept saying didn't have them eventually gave up assuming everthing was OK.

[Hidden]

Oh dear.... Have you been tapering before or during this period? Was there anything else happening at the time emotionally or physically? When is your next test due?

[ali5son in reply to Hidden]

Had tapered to 3 1/2mg after 2 yrs went to Gp she told me to go back up to 4mg. Still work 2 12hr shift a week and due to a work colleague being off longterm sick and management not covering shift was feeling tired. Rumi was very dismissive said I was to young to have PMG and wanted me to tapper off pred 1mg a month also prescribed Naproxen Went back to Gp and felt she was unsupportive and told me to tapper still no blood results from hospital so did not reduce. But could not believe blood result when I asked when getting flu jab

[ali5son in reply to Hidden]

Thanks

[DorsetLady PMRGCAuk volunteer]

Do you have any symptoms? If not, then your ESR could have been raised by something else - for example had you had a cold or some other illness prior to your blood tests?

Mine shot up earlier this year following a couple of operations.

Might be a good idea to get them tested again to see if they have reduced.

[ali5son in reply to DorsetLady]

Was really stressed after Rumy appointment and work has been very stressful

[DorsetLady PMRGCAuk volunteer in reply to ali5son]

That could well have caused it - but get it tested again even if you haven’t any other symptoms.

Then let us know outcome please.

[ali5son in reply to DorsetLady]

Will do and thanks again for advice

[ali5son in reply to DorsetLady]

Got appointment Gp Monday

[ali5son in reply to DorsetLady]

Thanks

[piglette in reply to DorsetLady]

My CRP went up then dropped to 72, then up to 77 then up to 82. I get the results over the internet. Went to see GP who said CRP has gone down, so I said are you sure, yes yes he said, so I asked him again and he assured me it had gone down sounding rather annoyed. I then said that another GP had mentioned they had gone up and he finally admitted they had but added by not very much! He then said well you always seem to have high markers, I pointed out my CRP was 5 a while back which he ignored and said fine, bye bye. I really do despair.

[phebamom in reply to DorsetLady]

My SED jumped to 91 last month. This month it is 140. I had a horrific diverticulitis attack last week. I am now on antibiotics. A lot of things can cause a jump in Sed rate. In this case we are assuming it is bowel infection. I have had silent diverticulitis for years. The infection with the condition comes and goes, but never totally goes away. I am wondering how much of my problem is diverticulitis with infection and how much is pmr/gca

[PMRpro Ambassador in reply to phebamom]

As far as I know, being on pred can mask the symptoms of diverticulitis. So you are developing it without knowing. Has it been confirmed as diverticular disease? Sometimes forms of inflammatory arthritis can have g/i symptoms.

[phebamom in reply to PMRpro]

Pretty sure this is some form of bowel disease, as far back as ten years ago a gastro wanted me on an antibiotic for it. I am wondering if it is part of my high SED all along. I have had lower left groin pain for at least four decades.

[fmkkm]

If I had a sed rate that high I would expect a repeat to make sure it was coming down. A sed rate is a very inexpensive test so they shouldn’t argue.

[ali5son in reply to fmkkm]

Got Gp appointment first I could get 3 weeks the nurse suggested I make one. Will maybe phone for a phone appointment tomorrow and see if if can get blood work

[ali5son in reply to fmkkm]

Thanks

[phebamom in reply to fmkkm]

They are keeping an eye on it. I will probably hear from doctors next week. My first fear was cancer, but the level of pain and fever I experienced with the diverticulitis leads me to believe I am dealing with infection. My rheumy thought I had an infection last week. I would not wish a full blown diverticulitis attack on any one.

[Hidden in reply to phebamom]

My sed rate up after inflammation/infection in colon in May which Dr dx as something diverticular related The pain from the lower left tummy has just eased in time for Gastro appt. But yes... It was extremely painful and when samples were clear of blood, but showed inflammation my mind waS eased a bit. I have a CT scan of abdo, pelvis and thorax at the end of the month which will be followed by colonoscopy. The gastro believes its post infection IBS but is double checking everything.

I don't envy you and hope you don't suffer any more flares. I did t even like the (needed) weight loss. Just about back to eating food okay but avoiding dairy. Even though it may be the reason for higher sed rate I increased pred due to symptoms of pmr flare.....the stress of the colon infection/inflammation has caused a flare. 🌻

[phebamom in reply to Hidden]

This is the first time I have an attack of this magnitude, although I have had lower left groin pain on an off for four decades. I have stopped losing weight since the antibiotics, so am wondering if super high SED is not from infection in my intestines. My rheumatologist says it is infection and that my "disease" is stable. I have been able to drop from 8 to 7 mg prednisone. No shoulder hip or foot pain, which are my three focal points. My goal is 5mg. I am doing that slowly. I don't think a SED of 140 has a thing to do with the disease and everything to do with infection in my colon. When I had the attack it was so bad it even when down my thigh into my upper leg, and the leg is still tender. I don't know what I did, but as usual, I did it whole hog.

[Hidden in reply to phebamom]

I can relate to the leg.... It felt like hot tar was being poured into my lower left back and leg... Its usually just warm tar from existing nerve damage. I didn't think a bowel issue could cause that pain. I was prescribed buscopan which helped with it being ibs based I suppose. If I tapped my out thigh it felt almost like it caused a reflex action in my leg. Bodies are funny things aren't they!

[jinasc]

Did you get the Bone Scan results?

I do so hope your work situation has changed for the better as well. 12 hour shifts are really hard going, especially for some one with an auto-immune illness.

[ali5son]

No did not get bone scan results. Also do not automatically get a flu jab receptionist said I did not qualify for it but they asked doctor and gave it to me yesterday. I work in a homeless unit run by local authority

[DorsetLady PMRGCAuk volunteer in reply to ali5son]

Well surely you should qualify for flu jab on that alone ...without adding in your illness. The mind boggles sometimes!

[Hidden in reply to ali5son]

You and others as well who work have my admiration. Can understand the stress. My best to you.

[PMRpro Ambassador]

Symptoms?????

In the UK I was told I didn't qualify for the flu jab. Never been a question here.

[TooSore]

In the USA they almost beg you to get one. For me it's offered at work. Cheaper to get the nurses in to give them then to pay for substitute teachers