Bloods

[shella]

Still on steroids but as bloods pretty normal my doctor tells be I no longer have Vasculitis Nice thought but is this correct? Even specialist says no longer active but then why did he up my dose when I complained about blurry vision - I am worried and confused

[SnazzyD]

Hmm, mixed messages. I had fairly classic signs of GCA which responded to 60mg Pred in two hours. However, my bloods were all normal though I still think my ESR was high for me even if it was still in normal limits, being 16 instead of the usual 4. The Rheumy didn't seem to buy into that theory though, but did say it was possible to have normal inflammatory markers with GCA. Others will reply I'm sure.

[DorsetLady PMRGCAuk volunteer]

Hi shella,

Your bloods should be 'pretty normal' if you're on the right amount of Pred, but that usually means they're doing what they're supposed to!

What else did he base his decision on? How long have you been on steroids, what dose did you start, what dose now?

[shella in reply to DorsetLady]

An ophthalmic surgeon said cataracts even tho two local opticians said very very early stages. GCA/PMR since 2013... started with 60 reduced about 6 months ago to 5 now consultant put me up to 15 but taking 10/15 now alternate days. Strange based on good blood tests he says not active... all very confusing...,mentioned steroid induced cataracts..... maybe should get another proper opinion? The blurry vision comes and goes....

[DorsetLady PMRGCAuk volunteer in reply to shella]

hi again,

Many do get steroid induced cataracts, particularly if been on high doses - myself included. The blurry vision could be that. Your GCA/PMR may be in remission, but as PMRpro says you'll probably only know if you come off Pred.. but it can be a brutal way of finding out!

My GCA lasted 5 & 1/2 years.

[Hidden in reply to shella]

Hi. I am diabetic pre pred but 15mg raised my blood sugar enough to make my vision very blurred. Prior to pred I had been well controlled and no blurred vision for 16 years. Just a thought....if it doubles your fasting level of blood sugar then might explain blurred vision.

[PMRpro Ambassador]

No it isn't necessarily correct - it is possibly only drug-induced remission. As long as you are taking enough pred to manage all the inflammation the blood markers remain low. If the underlying autoimmune disorder causing the inflammation is still active if you take away the pred, the inflammation will mount up and cause symptoms again.

I don't know where they get this idea - they diagnose on the basis of raised inflammatory markers, they treat with an anti-inflammatory drug and monitor the markers to see if it is working and keeping them low.

The only way you can know the vasculitis is gone is by coming off pred and no symptoms returning. It's hardly rocket science.

[shella]

Thanks for all that .... ophthalmic guy wants to see me again for field vision test and will drill him next time ....strange that two opticians told me it wasn't cataracts? Dont really want them done if not sure even tho I hear it's a simple op. Bit too scarred to come off steroids completely in case eyes get worse bit of a chicken and egg situation? I am on a pretty low dose as it's hydrocortisone which I was told is not as strong as pred. I have only one eye that works reasonably the other is a lazy one.... but I know in the last year there has been deterioration.

[PMRpro Ambassador in reply to shella]

How long ago did they say it wasn't cataracts? Very occasionally they can progress very very quickly - one lady went from "fine" to "need surgery" in 3 or 4 months!

[piglette]

Dear Shella, do not come off steroids until you feel totally happy, the doctors do not have vasculitis you do. Saying everything is now normal when you are still on steroids is like putting a plaster on a cut finger. The cut is still there but you can no longer see it. The only way they can tell if things are really now normal is if you had stopped taking steroids altogether.

[shella in reply to piglette]

Thank you - don't understand doctors or for that matter those who are supposed to understand. They only go by blood test. Will keep taking the tablets .....at least I don't have those awful pains in hips and shoulders. But the ophthalmic guy said not GCA as I don't have pain in jaw etc... but then I never did !

[PMRpro Ambassador in reply to shella]

Each individual so-called typical symptom of GCA is found in way below half of patients. Quite why doctors think you would display all of them at one time I have no idea...

Please treat the patient not the lab results...

[piglette in reply to shella]

Hi Shella, I just despair sometimes. Common sense seems to have died. Everything is now on a tick off list.

[shella]

Very frustrating at times .... esp in this case .... we only have one set of eyes...., must admit by the time I was seen they were pretty wet!! The word cataract has only just been mentioned since I have been having recent tests. Don't know if the blepharitis which I have had since the Vasculitis began has any bearing ?

[SheffieldJane]

Because they just don't know shella and doctors think that they always have to " know". They love telling you that you are cured, even if they don't know. Then you present with another symptom and they up your dose because they really don't know. Blood tests do not always tell us whether PMR is active. GCA can come on very quickly in as many as 1 in 5 PMR patients, I think. Not surprised that you are confused, stick with us on here and get really well informed that tends to banish worry and confusion.

[Amkoffee]

Well first of all your doctor needs to understand that since you are on Prednisone it's no surprise that your inflammation markers are down that's the purpose of the prednisone. It doesn't mean that you're PMR is in remission. It simply means that the prednisone is doing its job.

Secondly blurry vision is one of the side effects of prednisone. I know because I've been suffering it as well. At least my close-up vision is a problem.