Rheumy appointment

[polymy]

I saw my rheumatologist yesterday. I am currently on 30 mg pred for GCA. My U/S and temporal biopsies were both negative. My recent CRP is less than 5. GCA has been diagnosed on symptoms alone. Rheumy says to reduce to 20 mg pred straight away then in 2.5 steps every 4 weeks from there on. Reducing by 10 mg seems a lot in one gulp! I am wondering if reducing by 5 mg might be better? I certainly don’t want the headache and jaw symptoms reappearing. I am terrified of losing my eyesight.

[Louisepenygraig]

This sounds a lot faster than is generally recommended on this site. A rule of thumb is no more than 10% which in your case would be 3mg. How long have you been on 30 for and what was your starting dose? That would help people who know a lot more than me give you better advice.

[PMRpro Ambassador in reply to Louisepenygraig]

That is for tapering to titrate the dose to the right level - not reducing the general level of pred altogether - different thing.

[Louisepenygraig in reply to PMRpro]

Thanks PMRpro - I'm still learning!

[PMRpro Ambassador in reply to Louisepenygraig]

It's something that worries a lot of people - which is why i explain when someone queries it. No worries ...

[Mstiles in reply to PMRpro]

Could you explain maybe with an example, say if you are at 9 mg? I’m not understanding the difference between titrating and reducing the general level of pred? My math knowledge is nonexistent. Thank you.

[PMRpro Ambassador in reply to Mstiles]

Titrating is a technique to establish as exactly as possible the right dose for YOU. Reducing is just cutting down the dose with the end point of stopping it altogether but without it being too much of a shock.

In asthma and a chest infection, for example, you might give a high dose of pred with a tapering dose to zero to reduce the swelling while the antibiotic also worked its magic. In the case of PMR you start with a dose that will probably be enough for everyone to combat the symptoms and then you taper it more slowly to find the ideal dose for the patient which will vary depending on various conditions such as weight, gender, disease activity and amount absorbed.

[Hidden in reply to PMRpro]

Thanks for that explanation. I got my knickers in a knot reading it.

[Mstiles in reply to PMRpro]

Thank you

[Hidden]

I can understand your reluctance as the last time you were at 20 was around 21days ago and you reported symptoms. Perhaps for your own piece of mind perhaps do it in 5mg stages. If 20 doesn't work against but 25mg has then you can increase by 5mg only and know it worked. It's not unusual for them to drop by bigger percentages at higher doses. If you get pain or symptoms that aren't quite like PMR/GCA perhaps it might be steroid withdrawal. OTC painkillers then.

If after trying that you can't reduce without symptom ring the Rheumy and ask if you can stay at 30mg another 2 weeks or more. Hope 5mg sticks if you try it.

[polymy in reply to Hidden]

Thank you poopadoop. It would be nice if these Rheumies were easy to get hold of. I think the staging in 5s sounds good.

[Hidden in reply to polymy]

Is there a nurse you see inbetween appts with the Rheumy. I have an email to them and used them to access the Rheumy.

[polymy in reply to Hidden]

Yes there is a nurse on helpline. She will get back to you within 48 hours although this sometimes doesn’t happen. She then has to get in touch with the Rheumy so it could be many days before anything happens. In the case of GCA, loss of sight can be sudden. I suppose A&E is there if things are desperate. I see the nurse in 6 weeks time.

[Hidden in reply to polymy]

Yes. A and e is always there and if visual issues arise you have the pred at your disposal.

[PMRpro Ambassador]

5mg now and 5mg in 2 weeks gets you to the same place in the same time and offers a chance to assess things on the way. They are obviously convinced there is no cranial GCA - have they considered other causes of the symptoms?

In other uses of pred 10mg drops are not unusual providing you haven't been on the dose for very long and down to 10mg you can drop quite quickly to get off pred or to a much lower dose. Only you can find out how you tolerate it though.

[polymy in reply to PMRpro]

If she has thought of other causes she didn’t mention it I’m afraid. She is very brusque and seems quite put out at me asking so many questions.

[polymy]

I think I would be happier with 5mg drop for 2 weeks then a further 5 mg drop getting me to a 10mg drop in 4 weeks. Thank you for that. I have a lengthy scar from the biopsy and I think it may still be causing me pain and headache. The jaw claudication has resolved. She said 50% of patients are diagnosed on symptoms alone there being negative U/S and biopsy. She did say that with the bloods being ok there was no cranial GCA.

[PMRpro Ambassador in reply to polymy]

Wrong again - 1 in 5 GCA patients do not have raised bloods. I didn't and there was evidence of cranial symptoms - and loads of evidence of inflammation elsewhere.

Is this your usual rheumy or is it the first time? If the symptoms return I would discuss whether it is possible to see someone else. Really - while she may have been having a bad day she obviously doesn't have good patient-relationship skills.

But let's see how the reduction goes. You may have weathered the worst part, some doctors are confident that 15-20mg is enough even for GCA provided there are no visual symptoms.

[Hidden in reply to PMRpro]

That's the info I was just looking for. I thought it was around 15 to 20mg.

[polymy in reply to PMRpro]

I must admit I don’t feel at ease with things but will see how it goes with a staged reduction. She doesn’t have a good patient doctor relationship and seemed irritated by my questions. She also over simplified things as though I were an idiot incapable of understanding.

[PMRpro Ambassador in reply to polymy]

But you are inferior! You didn't go to med school...

They forget that some of us have as much education as they do and in similar fields. I tend to feel such doctors have inferiority complexes.

[Jackoh in reply to polymy]

Yes would agree that she is wrong . I have cranial GCA and my blood results have never been high. That aside she doesn’t appear to be a Rheumy you can work with.