Another Health Problem

[Jan1961]

Have been tapering down my meds ( PREDS) slowly since April 2014 as diagnosed with GCA and PMR early march.. haven't really had any major issues re tapering... Have had a persistent cough for two weeks. took myself off to the Docs to be told i have Bronchitis so now on a course of antibiotics. I just wanted to know if having a new health problem affects the tapering of the Preds as i have noticed slight headaches over the past week? I take 7.5mg and 5mg on alternative days have only got one more week of this to go, then to drop to 5. Doc said yesterday to just continue with what i am doing, but not sure if i should or call the consultant.

[Celtic PMRGCAuk volunteer]

Jan, definitely not a good idea to consider a reduction in steroids until you have completely recovered from the bronchitis. Both the infection and the antibiotics will be putting stress on your body without adding to that with a steroid reduction. To be on 7.5mg and 5mg on alternate days would be the dream of many PMR/GCA sufferers after only being diagnosed 5 months ago - please don't rock the boat! I do hope you feel better soon.

[PMRpro Ambassador]

If you were diagnosed with GCA in March of this year this is far too soon to be on a dose of under 10mg - it it was PMR it would be a different matter. This paper from a top UK rheumy group gives a reduction scheme for both PMR and also for GCA - and after 6 months they still have GCA patients at about 20mg:

rcpe.ac.uk/sites/default/fi...

The most recent basic research on GCA showed that there are still indications of active GCA after 6 months on high dose pred (over 20mg) even though there are no symptoms and blood tests remain at normal levels, suggesting higher for longer is needed. It is very common to have flares of GCA in the first 18 months and the most common reason for flares is reducing too far or too fast.

A persistent cough can be a symptom of GCA being present in the chest arteries and could be a sign of GCA, particularly since you mention headaches too. Bronchitis is "inflammation of the airways", GCA causes inflammation of the arteries supplying those airways.

On the other question - yes, definitely do NOT reduce whilst you have an infection. Many doctors INCREASE the pred dose for patients with infections although it may not be necessary but a reduction is not a good idea. The secondary illness imposes a stress on the body, stress makes GCA and PMR symptoms worse.

I would contact your consultant - and do not underplay the headache and the cough. Is it the consultant who set this very rapid (for GCA) tapering scheme?

[Jan1961 in reply to PMRpro]

Thanks you both.. Yes it was the consultant who set the rapid tapering...

'A persistent cough can be a symptom of GCA being present in the chest arteries and could be a sign of GCA, particularly since you mention headaches too. Bronchitis is "inflammation of the airways", GCA causes inflammation of the arteries supplying those airways. '

I didn't know all of what you say above... why is no health professional telling me all this...

Think i will call the consultant and tell him off !

[PMRpro Ambassador in reply to Jan1961]

Partly because they haven't come across it before. It is mentioned in many texts about GCA - but it isn't included in the UK guidelines at all.

I have just googled "persistent cough in GCA" and all the references are to Mayo clinic info except for these references

ersj.org.uk/content/7/12/22...

hindawi.com/journals/crim/2...

where they describe it as being "unusual" - not in my experience it isn't! I know several people with GCA who had coughs - and that probably represents about a third of the people I know with GCA. OK, we are a group who are perhaps more unusual in that we have all met on forums which often suggests we are searching for info outside the normal range.

Whatever - I know about it and have read it in several textbooks and papers. There are a lot of things about GCA and PMR I have learnt from reading publications from outside the UK - mind you, quite a few are from the US and their rheumys don't know about a lot of things either!

[Jan1961]

i have been told that GCA affect the arteries in the head.. i have never been told it can affect all arteries.. i am just plodding along thinking my head is being sorted !! I had a heart attack back in 2011 does that mean that these can be affected too?? No one is telling me things.. All the health professionals i have seen know about my medical history but yet none have told me this or referred me to a heart consultant who i was signed off from in 2013 .. arrrrghhhhhhhhhhh !!

have also been taking night sweats in the past 3 weeks.. so badly that i need to shower in middle of the night... i mentioned this to consultant who said steroids cause this... but when i was on high dose i wasnt getting the night sweats....

[PMRpro Ambassador in reply to Jan1961]

Yes GCA can affect the arteries in the head - but it can also affect any artery with an elastic layer in its wall. And that includes the aorta and brachial arteries amongst others. Long term there is a higher risk of various things like aortic aneurysm when you have had GCA and we are supposed to be monitored. Do they do it? Do they heck! Or at least, most people aren't monitored.

And as Celtic says - those night sweats are concerning to me too. Yes, pred sometimes causes them and so do PMR and GCA - but there are other things that cause them and as far as I know being on pred doesn't excuse you from some of those reasons.

Anyway - if the antibiotics don't help with the bronchitis, it could be GCA. However - with a consultant with the sort of attitude yours obviously has I'm not sure what to say. Where are you? If you are in the UK maybe someone could point you to someone more au fait with GCA.

[Celtic PMRGCAuk volunteer]

Jan, nights sweats of that severity are concerning in that they were among my symptoms pre-PMR/GCA diagnosis, so together with your "slight headaches over the past week" it does sound as though your present steroid dose may not be controlling the inflammation. It's possible, of course, that the bronchitis could be contributing to the night sweats, but as I said in my earlier post, many PMR/GCA sufferers can only dream about such a fast reduction and it does sound as though you need to up the dose now - that should at least give you an answer in the next few days one way or the other.

[GreyOwl]

Jan. having been diagnosed with PMR and GCA in March 2012, I am now down to 6/7mg alternate days from an initial dose of 60mg which my consultant had me maintain for over four months and then tapered down to 10mg which I had to maintain for a year.

I'm amazed at the speed of your reduction and to me it would seem that the GCA is not under control bearing in mind the symptoms you report.

How often does your rheumy see you?

[Jan1961]

Seems I have a rubbish consultant! I see him once every 3 months ... I am just left to get on with it... I called hospital yesterday and spoke to his secretary who tried to fob me off saying it was a conjestion headache ! When I explained other symptoms to her she noted them down, so she said, and told me that she would get him to call me, otherwise is if gets worse to go to accident and emergency... Needless to say I am still waiting for the call! Heads still sore as is neck and shoulders... So now unsure what to do! Oh I am in the UK south East London... Kent area

[GreyOwl in reply to Jan1961]

It certainly seems that you need to be taking a larger dose of Pred. I think you should see your GP right away and discuss it with him. It's better to be taking a dose that manages the GCA than to rush to reduce because in the end you will be on the wretched pills for much longer.

Why not tell your GP you want to be referred to a different rheumy?

[mega in reply to Jan1961]

Jan 1961 - I am no expert on GCA, just someone who has had it since Jan 2011. Your symptoms match the ones I had before I was diagnosed though, 3.5 months after first attending the surgery. Terrible night sweats, headache & right shoulder ache were the first symptoms, apart from the awful fatigue. A persistent dry cough followed later. None of the doctors in my practice recognised GCA and I was told "you are a complete mystery" and "you are unique"! Having been through various procedures in Oncology with negative results I was eventually diagnosed by the Oncology consultant! and started on steroids, which were immediately effective. (I was, later, quite put out that I had not been referred to a rheumatologist but after your experience, maybe I was lucky!)

I agree with the other posters here - a too rapid reduction in steroids. I had a very slow withdrawal but after 3.5 years and finally getting down to zero - in spite of symptoms returning which I tried to 'live through' - I had to start again, this time at 30mgs. Seven months on, I am down to nine but it is 1mg drop every two months now and so long as I feel OK. A bit different to your experience eh? I loathe them but can't operate without 'em. I know you won't feel like a fight but I do think you must sort out your dose with either the rheumy or the GP. Is there someone who can accompany you? Have you had checks on your blood?

Stay with this forum. I've learned more here than from any doctor or consultant. I hope you get sorted out very soon and please don't feel you must reply to this. Just let us know, in a while, how you're getting on.

Best wishes, Mega

[Jan1961]

I saw my GP on Thursday and told him about the headaches, night sweats and cough.... Said I have bronchitis and to continue with whatever my consultant said.., I asked my GP months ago to refer me to another consultant... His reply was .. Let's stick with this one for now !! I swear I learn more on here than I do any of the health professionals I have had the misfortune to be in contact with!

[GreyOwl in reply to Jan1961]

I think it's your right to an alternative referral if you're not happy with your current consultant.

Also, if there's another GP convenient for you you might consider a change there.

It's quite apparent from what you say that neither are really familiar with GCA and it's management and I really would recommend you start to make a fuss until you get some decent medical treatment.

[paddyfields]

The secretary (!!!!!??0 opined on your symptoms Reminds me of when my dads GP's receptionist tried to fob me off with the mouth wash they had been treating his swallowing problem with on the theory that it was his rotten teeth that were the problem. I had called for the promised referral letter to a specialist - stick your own stamp on -he died of cancer of the oesophagus. This was decades ago and one likes to think that things have moved on but going on patient forums makes you realise that you have still have to keep your wits about you. Even when I hand typed summary of my history and meds., the medic's write up is still too often wrong in significant details.

[lynabelle]

Is it a dry hacking cough and you feel as if you want to vomit? I get this every time I tried to taper my steroids