Just so confused....

[Janann25]

For those of you who read my earlier post "Batting my head against a brick wall", you will know the problems I've had with both side effects of Pred and also my difficulty in tapering. Following the rheumatologist's instructions 10 days ago to reduce to 25mg immediately, I decided just to reduce to 27mg for 2 weeks and then try reducing to 25mg. Within a couple of days I started to feel even more dizzy than usual plus Intermittent pain in the temple/eye area. I stayed on 27mg in the hope that it would settle down (vision is ok so far) but overnight last night the symptoms/side effects increased. I took an extra 3mg at 3am, to bring me back to 30mg but so far this hasn't improved things. Of course, the support nurses at the rheumatology department don't work weekends - they're very good with responding usually - so I have no way of getting advice until Monday. I don't want to risk my health by not taking enough Pred but I'm also concerned at the side effects of increasing it again. Help!!!

[SheffieldJane]

In my view you have got your priorities right. I would continue upping my dose until the GCA symptoms settled. On Monday morning you can take medical advice and nothing will have been ruined. You do sound quite ill. I would consider A&E or an Ambulance. Guess what is the first thing Hospital would do? Yup, put you on a high dose. Try not to get in a panic, you've got the remedy in your hand. Side effects go, consequences of unchecked GCA do not. Let us know what happens - bless you - it's not nice is it?

[Janann25 in reply to SheffieldJane]

Thank you for your very quick reply. Yes, I understand that I may need to increase my Pred but I also read regularly on this forum that it's not a good idea to increase/decrease a dose quickly - and as I still don't know whether it's symptoms or side effects, I don't want to do the wrong thing. As you say, it's not nice.

[SheffieldJane in reply to Janann25]

Yes, it is not a good idea to do big reductions in dose, or to yo yo your dose. It is however necessary to increase your dose to manage wayward inflammation sometimes and then gradually taper down again when all is settled. Also it is useful to give yourself a boost of 1 or 2 mgs in times of physical or emotional stress. What is not good is to keep forcing your dose lower when your body is not ready.

In my opinion your symptoms do not sound like side effects, although Pred can make you feel pretty crummy. It is the temple pain that is concerning and the fact that it happened when you reduced your dose.

You could ask your GP for a referral to another Rheumatologist, it's what I did, the improvement was immense.

[PMRpro Ambassador]

If you have GCA then the side effects of pred are minimal compared with the potential side effects of unmanaged GCA. Until my rheumatologist could prove to me it is NOT GCA I wouldn't be comfortable reducing. If he won't investigate to show that I would be looking for another doctor.

[Janann25 in reply to PMRpro]

Yes, I know you are right and I will increase to 35mg when I take my usual dose at 10pm. I will also leave a message on the support nurses' voicemail tomorrow so hopefully I'll be the first message they pick up on Monday morning.

In the meantime, do you know how I should go about finding and changing to a better rheumatologist - I've never needed to do this before. Thank you again.

[PMRpro Ambassador in reply to Janann25]

For a start I'd put a new post on the forum asking for recommendations from anyone here and saying how far/where you could/would be willing to travel. Bristol has a fast-track set-up, which probably wouldn't apply for you now but suggests they are good with GCA (am I remembering correctly: somewhere between Cirencester and Swindon?), the certainly have had top people there.

Once you have a good recommendation, you inform your GP (a good one, not the locum!) of the problem you feel you have with this one and say who you would like to try. In England it is your legal right to choose where you are seen. GPs may be a bit stuffy about a second opinion though.

Unless of course your good GP is happy to manage you - but that means you have to be sure of seeing them. Not numpties who think they can bamboozle the patient.

[Janann25 in reply to PMRpro]

Thank you. I'll write a new post as suggested and see what happens.

[yogabonnie in reply to PMRpro]

And yet another wonderful word heretofore unheard! Numpties!!!! I have to start a list. Good luck to you janann25. keep us posted.

[Polywotsit PMRGCAuk team member in reply to PMRpro]

On what criteria is it unmanaged? This member has been on high doses since August.

[PMRpro Ambassador in reply to Polywotsit]

I didn't say this patient was "unmanaged". I made a statement regarding the side effects of steroids and the potential effects of unmanaged GCA. Not this particularl member.

[Polywotsit PMRGCAuk team member]

Hi again. I am really shocked by this thread. You have been on these high doses of steroids since August. That means you have already taken between 3 and 4 grams of prednisolone. That's already half of what I took in 3 years! It's no wonder the rheumatologist wants you to reduce. Your sight is not now in danger from GCA.Under the onslaught of steroids, any giant cells have long since atrophied and died. If you have GCA, it is being controlled. You may have some blurring and discomfort that are due to steroid side effects. Your intake of prednisolone is going to worry any rheumatologist. Please trust your doctor and don't go up to 35mg. Please.

[Janann25 in reply to Polywotsit]

I took your advice and have stayed on the same dose, i.e. 30mg. I will contact the support nurse in the morning and ask whether I should stay at this dose for another couple of weeks or reduce to 25mg which is where she wants me to be by 1 January. I will keep you updated - and thank you.

[Polywotsit PMRGCAuk team member in reply to Janann25]

Thank you too! Good luck with it.

[Grants148]

Jannan25 l do hope that you will be OK, please keep us posted .