4 questions

[gesundheit]

Do GCA sufferers experience pain when flying? What about taking sleeping pills when taking Pred? I just collected Pred from Boots not Sainsbury's and was given the brand Almus not Actavis.Should I worry?What can I do? Why do people have to be on steroids for so long?

[DorsetLady PMRGCAuk volunteer]

Hi,

From personal experience I have never suffered any additional pain when flying. Not sure ever seen any comments on here either.

You can take sleeping pills with Pred, but you should always double check with GP or pharmacist.

Different brands of medication shouldn't cause a problem unless you are sensitive to the additional fillers some companies use. If you are then advise pharmacy.

You need to be on steroids for as long as you have PMR/GCA. The Pred does not cure it, all it does is control the inflammation/pain that accompanies the underlying disease. No one can say how long you will have the disease, it can be 2 yrs, 4yrs, longer maybe. All you can do is control it whilst you've got it.

[gesundheit in reply to DorsetLady]

Thanks for replying.How do you know ypu've still got PMR/GCA if you're still taking the med?

[DorsetLady PMRGCAuk volunteer in reply to gesundheit]

Quick answer would be stop taking the tablets and see if any pains return! But that's not sensible.

Most people are on a slow reduction plan, and know if they go below the level where symptoms are being controlled the pains return. If you continue to reduce with no return of symptoms then maybe you could assume it's gone.

From a personal point of view I thought my GCA had gone when I was down to about 1.5mg (5.5yrs in, approx 4 yrs on Pred)- can't explain what exactly but I just felt different! Not very scientific Im afraid. Wasn't 100% sure, so I just continued my slow taper to zero. No return of symptoms, been off Pred now for 8 months now.

[Jackoh]

Hi Gesundheit. Regarding the brand of your Pred for some folk this doesn't seem to make a difference. For myself I wanted to stay with the same brand so I used to always open the prescription bag in the chemist just to make sure it was my normal brand. If you walk away and take the prescription home you can't take it back and exchange one brand of pred for another. One chemist said that they could no longer get my normal brand from the warehouse so I rang round chemists and found one that could get my normal brand for me ( i.e Tesco- who I have found so helpful) I have the wockhart brand. Jackie x

[DorsetLady PMRGCAuk volunteer]

Hi,

I can only relate to my experience (GCA, never sure whether I had PMR, but don't think so), but when I started Pred it was a very high dose, and completely took away all pains. Full stop - nothing.

If you start at a lower dose, then you may still have some PMR/GCA niggles, which are manageable, but you are aware of them.

I found once I got down to single figures (can't remember exactly what) I began to feel pain in my knee, which I know was arthritis for two reasons,

a. I had it occasionally pre GCA, and

b. because my GCA only affected my shoulders & head, never any other joint or muscles.

A flare is usually a return of your original symptoms you had prior to your diagnosis. Maybe not as strong, but usually in the same areas that were affected previously - does that make sense?

The problem is if you didn't have arthritis or other pains prior to PMR/GCA, you can't always tell what is what.

[DorsetLady PMRGCAuk volunteer]

Hi again,

Shoulder pain/stiffness seem to be fairly common in GCA, but you can also get it without - only having problems within the arteries in head, neck and torso areas.

With PMR, it's your main muscle groups that are affected - so shoulders, hips, and sometimes knees.

Fatigue comes with both.

Some people have GCA, some have PMR, some have both - so it's a bit difficult to always know, but I would say you definitely have GCA, your sight problems confirm that.

Why your 1st Rheumy reduced you so quickly is beyond me! Don't know how long things have been going but it sounds as if you have again been reduced too quickly and have gone below the level of Pred you need to control your symptoms.

You need to speak to whoever is treating you - GP or Rheumy - and suggest to them you go back up - to a dose that's going to get things under control again. Don't think the odd one or two mg will do.

Good luck.