New!! Diagnosed with GCA on 10/11/2016 - a few questions, just to see if what I am feeling is normal!

[rozzzy]

Hi everyone - I am a newbie! - I am on 25mg of prednisone a day. Since the diagnosis I feel a little bit spaced out and as if I have a hat on that's just a bit too tight! I feel o.k. and am getting one with daily life but with a head that feels like a headache 'may' happen but so far hasn't. Is this a normal feeling? I am 50 years old and though it was quite a 'young' 50, until this struck! Also the weight gain with Pred - I have monitored my eating strictly since starting on this medication. What sort of doseage causes weight gain? is 25mg a small dose? I have to taper down every two weeks until 10mg. Thanks for any help and/or advice.

[DorsetLady PMRGCAuk volunteer]

Hi rozzzy, and welcome,

25mg is a slightly lower dose than most people with GCA start on, although I guess it depends on doctor and individual's circumstances. What symptoms did you have leading to diagnosis? And who diagnosed GP or Specialist?

The 'spaced out' feeling is quite normal, Pred is a powerful drug, but hopefully as your body gets acclimatised to it you should feel more normal. Can't help on the head though, but sure someone else will advise if they had same.

You don't say how much you have to reduce each two weeks, but if it's 5mg a time that's likely to be too quick, however you may be okay at 2.5mg. Trouble is the doctors are apt to be too optimistic in how a patient is going to react to tapering.

What you have to realise is that the initial high dose of Pred is to get the inflammation caused by the GCA under control, and some think that it can take up to 6 months for that to happen depending on how severe the GCA was at the outset. Then you reduce the dose making sure that the inflammation is kept under control at all times. That's the difficult bit, if you go too quickly then it can flare up again. Your aim is to get to the optimum level of Pred that controls the inflammation.

GCA is not like some illnesses in that take a course of tablets for 6 weeks or 6 months (say) and it's gone. There is no cure for GCA, it comes when it wants and goes when it wants - you need to take the Pred, at the right amount, until it burns itself out.

It's true most people do put on weight with Pred, but not all. If you eat sensibly and continue to exercise gently you should be able to manage. Unfortunately it does seem to give most people the chubby cheek hamster look because it redistributes the weight to certain areas!

As for getting on with normal life, that may not be possible in all things. You mustn't forget that both GCA and Pred can make your muscles weaker and you more fatigued so you need to build in some rest time - probably something you've never thought about before.

Please find out as much as you about GCA, there's a lot of info on the web, and do come back to this forum with any queries, advice or moans! There will always been someone who can offer advice- we've all been there at some time or other.

Take care.

[rozzzy in reply to DorsetLady]

Thank you so much for your reply! It all started with a blinding throbbing headache that went on for three days and nothing would shift it. Decided to go to the doctor thinking migraine to be honest. However the doctor took blood tests and because of the sensitive temples and elevated blood ESR levels etc put me onto pred at 30mg dose. A week later the bloods were re taken and they were at a normal level so I stupidly stopped the steroids because I thought I was cured!! A week later headache has returned albeit not excruciating. So now I am on two weeks of 25mg then two weeks of 20mg, decreasing by 5mg every two weeks until 10mg then return to the doctor to see how everything is going. I have no idea really what it is all about. However the internet is helping a great deal with all the info.

Thanks for your help

[DorsetLady PMRGCAuk volunteer in reply to rozzzy]

Hi again,

The head symptoms do indicate it could be GCA, but not 100% convinced. Did you have any muscular pains in your shoulders, arms etc? Did he discount other illnesses before he dx GCA?

If the doctor has suggested you reduce as quickly as you are, then I wonder if he is not sure either.

Think you can only do as he suggests, but if you do get a return of head symptoms, including sensitive scalp, jaw or teeth problems, or aches /pains in shoulders then back to him pronto. Has he recommended you see a Rheumatologist, if it is GCA then you ought to.

Please do keep us upto date with things.

[rozzzy in reply to DorsetLady]

Hi, the doctor said that due to the pain in my temple when he pressed and the pain in my upper shoulder aswell on one side they were going to treat me for this condition and because of the elevated bloods from inflamation. The bloods went back to normal from the 30mg of prednisone after a week, so I guess they think that prescription mg level is o.k. to stabilise it. I have to say that the steroids have worked well and there is no more pain as such. However I am not sure if he has looked into any other things that it could be! What else could it be do you think?

[DorsetLady PMRGCAuk volunteer in reply to rozzzy]

Hi again,

Good on your doctor for thinking of GCA. Probably because of the temples, in most people this symptom comes late into the illness, and initially all the doctors have to go on is pain in shoulders and fatigue. Personally I never had pain or enlarged veins in the temples, so it wasn't diagnosed until I'd lost sight in one eye.

The fact that your bloods went back to normal could indicate that as it was caught early on there wasn't as much inflammation in your body as those who have the symptoms a lot longer. And yes, the fact that you have no pain would suggest 25mg is enough in your case, but as I said if you do get any symptoms during your tapering don't ignore them.

As I said most people don't get the head symptoms early days, so doctors are looking at the shoulder problems, so frozen shoulder, rotator cuff problems etc are favourites especially if you are in your fifties.

[rozzzy in reply to DorsetLady]

Having read everyones posts on here, I will certainly be taking no chances on the symptoms! Only when reading about this condition did I realise how horrible it is and worrying! I shall plod along following the orders and as soon as there is a change I shall be straight onto it!!

Thanks again for all your help

[DorsetLady PMRGCAuk volunteer in reply to rozzzy]

Good, be aware but don't get paranoid about things. Life still goes on, and you may get 'normal' aches and pains of life, but unfortunately we all get into the mindset of thinking everything is connected to GCA whereas sometimes it not!

[PMRpro Ambassador]

If your GP believes you have GCA - then he should be referring you to a rheumatologist as an emergency. Some hospitals have fast track arrangements for query GCA patients to be seen, others don't so the GP would have to contact the rheumy department directly and request you be seen as an emergency. Or send you to A&E. Whereabouts are you?

There are few GPs who are capable of managing a patient with GCA - it is very rare and many GPs have never had a patient with it. That is illustrated by the way he is managing you - he should have warned you you needed pred for months - 2 years is the normal expected minimum for the course of the disease I'm afraid. 25mg is a very low dose to start with although if you had no visual disturbances it probably is enough. The reduction he is suggesting is also rather fast by any standards - as DL has said, GCA is not like a chest infection, take the pred and then slowly get off it.

This is one expert groups approach:

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

The reduction scheme for GCA is on p346 I think - if the symptoms are OK with 25mg then their 60mg would be OTT but I am concerned about the speed of reduction you have been told to use. 40mg is a much more usual starting dose though.

[rozzzy in reply to PMRpro]

HI there,

Unfortunately the doctor who suggested the diagnosis retired and I had to expain the situation to a new doctor who to be fair did explain alot more in detail and printed off a sheet for me. He has a couple of people with this but they are a little bit older than me. I didn't have any visual disturbances which was one of the questions asked. I guess I shall just carry on taking the 25mg and do as I am told. I imagine that unless I have a flare up of a headache etc then the prescription must be o.k.?? I live in Essex if there is anyone in my area.

Thank you for your advice.

[PMRpro Ambassador in reply to rozzzy]

Yes, if you have any return of symptoms then stop reducing and go back to the doctor. What you are looking for is the lowest dose that stops the symptoms - it's the speed of reduction that worries me!

[DorsetLady PMRGCAuk volunteer in reply to rozzzy]

You can look at the PMRGCAuk web page - that will give you a list if support groups around the country, I would have thought there was one near you. Or if you put your location in your profile - either Town or County and then search for those in your locality you might find someone.

Whilst I'm on the subject, wish more people would add location to their profile then maybe newbies would be able to search and contact people nearby. Town or County and/or Country is not giving away that much especially as we all have pseudonyms anyway!

I can understand why people don't fill that in - but it makes it easier for others to respond sometimes with specific advice on support groups, Rheumies and medication, especially as we have members from around the world!

[PMRpro Ambassador in reply to DorsetLady]

Quite DL! I don't want your address - but country and county in the UK would be SO helpful when writing a reply!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Absolutely, I can understand people are worried about hacking, scams etc, but we do tell each other loads of things that are much more personal!

It's very frustrating when you answer someone assuming they're in one part of the world, and then find out after you've sent it they're not, so you've told them a load of rubbish!

Some people are simple souls like me, but others are more imaginative with their non-de-plumes!!!!!!!!!!!!!!!

[rozzzy in reply to DorsetLady]

I have tried to update my profile. It doesn't seem to save unless it is a postcode for some reason, but I have put I am from Essex in my short bio.

[DorsetLady PMRGCAuk volunteer in reply to rozzzy]

Sorry, yes my fault, thought it asked for town! You can put in postcode and keep it hidden if you wish - that's what is used when you look for people near you - always assuming they've put theirs in!

[PMRpro Ambassador in reply to rozzzy]

pmrgca.co.uk/groups/

There are phone numbers to contact the various groups.

[Caro12line]

Hi Rozzy I have GCA and live in Essex. My GCA is not Temporal even though the first symptoms were Headpains that nothing would shift. It took 4 months for me to get a positive diagnosis of GCA of the Aorta, Subclavian and Axillary arteries.

[rozzzy in reply to Caro12line]

Hi, how did they find out exactly where your inflamation was?

[Caro12line in reply to rozzzy]

I had a PETCT scan. They inject a radioactive dye and could see the inflammation. Although diagnosis was GCA, this is technically incorrect (I have found out later) The only way to detect Giant Cells is with a biopsy. So my diagnosis should be Large Vessel Vasculitis.... This sounds a bit pedantic but treatment differs.. again I technically have Takayasu... but I'm too old and not Asian.

Which hospital are under? Which Consultant?

Xx

[rozzzy in reply to Caro12line]

Im not under a consultant and there hasn't been any mention of one. However we have private health, I may just ask for a referral anyway. I am familiar with both Springfield in Chelmsford or addenbrookes in Cambridge. If you have any suggestions of consultants that would be great!! Takayasu does sound as though it should come with rice!!!!

[PMRpro Ambassador in reply to rozzzy]

Would you consider Chertsey? Brilliant PMR/GCA guy there who does NHS and private. Worth the journey.

[rozzzy in reply to PMRpro]

Got the ball rolling for a referral to the Vasculitis Research Centre at Addenbrookes in Cambridge and a referral to a consultant also hopefully. So I feel a little more in control!!

[Caro12line in reply to rozzzy]

Excellent. I have heard good things about Addenbrookes. Good luck x

[Overburn]

Hello rozzzy. I haven't posted on here before, I just usually digest the experiences of others and read the excellent advice provided.

I was diagnosed with GCA 8 months ago, days after my 55th birthday. I started on 40mg Pred and am now down to 7mg. I have been very fortunate in having almost no side effects. No weight gain and no hamster cheeks (so far). I chose not to take any other medication preferring to hopefully maintain calcium levels through diet. I try to eat and exercise sensibly. My decisions were taken having seen the rapid decline of my father when he was diagnosed with GCA and put on steroids although I don't know what other medication he was prescribed as well.

I just mention this to show that everyone is different as is so frequently mentioned on this forum. Soak up all the information you can from all sources and don't be afraid to ask plenty of questions. Wishing you well.

[rozzzy in reply to Overburn]

Hi there, thank you so much for your response. It is a tough one! and I find it quite scary to be honest. I have been on the prednisone since 25th October and so far I havent had the physical side effects as such. Just the spaced out feeling. I am being extremely careful with my exercise, stopped the running and now swimming freestyle for 1K twice a week as I am booked into the Great East Swim next year. Heres hoping I am well enough to do it! It is good to hear that not everyone has side effects. It gives me a little hope!! thank you.

[PMRpro Ambassador in reply to rozzzy]

I didn't have much to complain about with UK prednisolone - the weight I'd gained with PMR and not being able to exercise properly for the 5 years with no pred redistributed itself to the usual places but that was all. Medrol was awful - and the version of prednisone I'm on now I have no side effects that I can tell.

It all depends - everyone is different.