Suffering with GCA

[alinazzal]

Welcome

I hope you are fine

I have not yet undergone a biopsy or any other examination, but I started taking prednisolone 60 mg and there was a change in the nature of the pain, it became somewhat controlled.

Then I reduced the dose to 40 mg, and after a few days I had a relapse and the violent headache returned, very severe. My doctor recommended increasing to 70 mg and continuing initially for two weeks.

I feel very frustrated with the continued pain

[SnazzyD]

Hello, I am sure you are frustrated. Unfortunately it can the nature of the condition initially and you must get it under control with an adequate dose. Some people need higher doses for longer in the early stages, sometimes even IV not just a pill to get GCA under control.

Could you add more detail to your bio about when you were diagnosed, symptoms, length of time on each dose, effect of the Pred. Are you expecting to have any diagnostic tests?

[DorsetLady PMRGCAuk volunteer]

You may feel frustrated… but the medication doesn't always work like magic… and as  SnazzyD says you need dose to be enough to work.

You say at 60mg it was somewhat controlled… it needs to be fully controlled before you reduce… and 60-40mg is a big step down.

Hopefully the 70mg will get it properly controlled… but a but more info might help us to help you.

[alinazzal in reply to DorsetLady]

I'm hoping 70 mg will help,

The last CBC examination showed a decrease in blood levels (8 g/dl) with a slight increase in the number of platelets, and other levels such as iron and vitamins are normal.

The doctor told me that the anemia was caused by inflammation.

Yesterday and today I had a new symptom, which is a lack of control over my body when standing. I think it is due to a lack of blood, which causes general weakness.

I realize that I need to have an artery biopsy, but the doctor told me that it might be negative because I have been taking prednisolone for a month or less.

[SnazzyD in reply to alinazzal]

How does this lack of control show itself?

It might be a side effect. On high doses some people (me included) find that their muscles feel uncoordinated and shaky, like being drunk. This can be worst when the Pred level in the blood is the highest about 1-4 hours after taking it. Mine was so bad I had to take it before bed to sleep through the worst. It isn’t due to lack of blood, just a side-effect of Pred that gets better as you reduce the dose.

[Latrel1217]

Thanks for sharing. I will be getting a biopsy today with hopes of getting to the bottom of the headaches.

[DorsetLady PMRGCAuk volunteer in reply to Latrel1217]

Hopefully you will get a definite answer, but just aware you could get a false negative…and that can happen if the tiny sample taken doesn’t show any sign of GCA which is quite possible. The cells caused by GCA aren’t spread evenly throughout the artery, nor are they necessarily in every blood vessel.

My temporal artery was never affected, but I most certainly had GCA

So if you get a positive result then you do have GCA … but in some cases you may still have it and get a negative result from the biopsy.. which is why it’s only part of the diagnostic process… and if symptoms suggest GCA then you should be treated for it, until proven otherwise…

[SnazzyD in reply to Latrel1217]

Sorry, to rain on your hopes that the biopsy will tell all, but after treatment with Pred it will make the result less reliable. Some doctors say a few days on Pred is enough to confuse the issue and some say a few weeks. The biopsy is a bit like the Covid test in that a positive is really positive but a negative could be false. In a patient with a negative result that is symptomatic and/or responded to a decent dose of Pred is still treated as GCA like I was. Another cause of false negatives is that the piece of artery removed doesn’t contain the giant cells as they are somewhere else in the artery system. They are limited to a few artery branches because they are close enough to the surface. If the sample is less than 1cm that too makes the chance less. You can find yourself hoping for a positive test if only to get rid of the wretched uncertainty!

[alinazzal in reply to SnazzyD]

This is actually what I'm thinking, your words summed up what's inside me

[alinazzal in reply to Latrel1217]

I hope that you are well.

I hope you will tell me the details after you complete the biopsy because I think I will perform it. Is it painful, and how long does it take for the result to appear?

[Grammy80]

I wondered if a doctor directed you to reduce at that rate. Who will be treating you? Can you see a rheumatologist? You know you are dealing with something serious. When I was initiallly diagnosed with GCA, I was on 125mg per day for a month before slowly going down to 80mg....I did not get to 40mg for two years and I was also on a steroid sparer, Actemra. You don't want to risk your vision, so it is important that your body receives the steroids it needs to keep the disease under control. We are all unique...stay here where you will have company on this journey. Being here still gives me support and always hope. 💞

[random901]

Hi alinazzal! I had a biopsy just over 2 weeks after starting 40mg pred. GCA confirmed. Worth doing.

[Viveka]

Hi Alinazzal, as Snazzy says, it would be good if you filled in your bio so we could have a better understanding. As a rule of thumb from the experience of people on the forum, pred should give you at least 70 per cent improvement of symptoms and any symptoms that remain should not be getting worse. It can start to work within a few days, but for others it may be longer. You can do bigger tapers at high levels of pred but only when stabilised. Have a look at the UK national guidelines on the charity's webpage. But experience from forum is that everyone is an individual - in particular docs may be overly optimistic about how long the (time-limited) condition will last.

Finally, pred at high doses can have all sorts of weird side effects that resolve when you get to medium levels. Good luck.