Should I increase pred. ?

[cycli]

Started at 20mg 13th June for PMR. Instant effect but reversed after 4 days. Realised concurrent GCA so doubled dose on 23rd June to 40mg. That was 6 weeks ago. PMR pain free but have felt Slight GCA all the time. Usually gone 2 hrs after pred, dose. I can feel GCA in temples and a little at neck. Bloods due next week but thoughts please so I can discuss with Dr. She want to start reduction but we await the results of test first. Legs getting more sluggish during day so I suspect the initial dose 40 wasn't quite enough to suppress fully.

[DorsetLady PMRGCAuk volunteer]

Hi, Who increased you to 40mg? It is the lowest dose for GCA (without sight issues), so not always enough…having been on it for 6 weeks you really shouldn’t be having any symptoms.

Bit confused, you say ‘felt slight GCA all the time’, but then say ‘usually gone after 2 hours’….so what exact do you mean? It is there all the time, but worse until the Pred kicks in?

As we’re always saying on here, bloods are not the be all and end all when deciding whether to taper…..in my first year with GCA, my GP and I discussed every taper on a monthly basis and depending on how I felt first and foremost, and if corroborated by blood tests, I reduced.

My gut feeling is that maybe 40mg is not quite enough, so no tapering at the moment, but from previous post I do wonder if you are trying to continue life as normal so maybe not helping the situation.

I know you don’t want to lose your old life, but you do have to “accommodate” your GCA until you get it properly under control and have worked out what you can or cannot do.

[cycli in reply to DorsetLady]

Doctor increased to 40mg. She then arrranged opthalmologist for sight. I chose her at the practice because when I had another problem.I told her I thought I had a DVT I think from a knee injury and immobile for 3 wks. she listened, said I only presented with 3 of 11 symtoms but she treated it as if I had DVT, gave me clexane immediately and referred me for scan that afternoon. Turned out I had a DVT. It took 6 months to diagnose this as I had so many things seeming to go wrong and she eventually twigged that it could be PMR...gave me 20 for that but i soon went back after initial relief. I have GCA and it's mostly suppressed I think.The headaches were 24/7 and tried paracetamol but no effect Just when I wake up I have pressure at temples, slight jaw ache when chewing and can feel pressure at back of eye, mostly left side. When pred cuts in it recedes but comes back at the end of the day. That's why I think that 40 wasn't quite enough.

[DorsetLady PMRGCAuk volunteer in reply to cycli]

That explanation to me suggests 40mg is still not enough… so you need to discuss with doctor.

[cycli in reply to DorsetLady]

thank you.

[PMRpro Ambassador]

If you have GCA then you have a serious systemic condition - and youreally do need to bear that in mind. And if you MIGHT have GCA - then I hope you have been referred to a specialist. It is beyond the abilities of most GPs to manage.

[cycli in reply to PMRpro]

See above PMRpro...certain I have it but uncertain if the dose is sufficient. I don't think I should risk reducing like she wants as it feels like it could rear up again if I do and I really don't eve want to feel like that again.

[PMRpro Ambassador in reply to cycli]

Is this the GP? If she wants you to reduce when you still have symptoms at 40mg, you need an emergency referral to a special. Mike Plant at James Cook is usually pretty sensible and used to be part of the NE PMRGCA charity support system.

[yogabonnie]

I would not reduce but consult again and perhaps with another doctor. You don't want to lose your sight which is possible with GCA. Best of luck!

[cycli in reply to yogabonnie]

Yes it's the doc. but she's sensible when I explain. Due to consult next week after bloods. I think she will understand. If not I will refuse to reduce despite my wanting to be off the pred. I have read too much on this forum to risk the consequences. I may need to consult if she won't increase and I'm beginning to think that might be the next best course. How much is the question.

[yogabonnie]

And for what it is worth... my doc looked at the forum and said follow the advice here! They know a lot!

[cycli in reply to yogabonnie]

I'm going to suggest she refers to this forum also as the advice is so well founded. It can't hurt for professional medics to understand what it's like to have it. How many rheumatologists have actually experienced the pain and fear this condition brings. Bet they wouldn't be so patronising and all knowing then.

[piglette]

While PMR can normally be managed solely by your GP, in the case of GCA your GP should refer you to a rheumatologist.

[PMRpro Ambassador in reply to piglette]

As an emergency - not a routine referral. Wonder how often they would manage an MI or stroke themselves?

[piglette in reply to PMRpro]

One shudders at the thought

[cycli in reply to piglette]

would be less around...

[PMRpro Ambassador in reply to cycli]

True ...

[patrickd]

Consult your physician before you increase your steroids!

[PMRpro Ambassador in reply to patrickd]

I appreciate that is what one shoud do -- but it's unreasonable to say that to someone who has to wait 3 weeks to speak to a GP!

[cycli in reply to patrickd]

I intend to. If one has their ear and they listen it would be foolish not to discuss it. I am due a consultation this week so ok. If however I was seriously concerned and they wouldn't arrange a consult I would consider taking unilateral action. PMRpro is right about that. This site gives one confidence not to be silly and take control for oneself if one must. It's all a matter of balance and judgement.

[patrickd in reply to cycli]

Well, I didn't know. I am lucky I guess. I just email my physician and she will tell me what she recommends given the long relationship. Gosh, Maybe I shouldn't reply to anyone anymore as I'm just trying to help and I get in trouble.

[PMRpro Ambassador in reply to patrickd]

You just have to bear in mind that this is a multinational forum and the systems and the situations are very different from country to country. And that what you see in writing may not sound the same if the words are said F2F. It is perfectly correct that we should ask a doctor - but all too often the doctor hasn't a clue or you can't get to speak to them for weeks. There aren't that many in the UK who work with email for some reason.

[cycli in reply to patrickd]

that sounds a great way patrickd. wish mine would. Not in trouble with me or PROpro. just saying is all. All advice and ideas helpful.