Has anyone had any problems relating to the temporal artery biopsy itself

Hi Elaine and welcome!

When you say your doctor - do you mean your GP? Is the site reddened and hot to touch? If so I would suggest you call the hospital that did the biopsy and ask their advice or go to their A&E department if they have one. I can't think of any steroid side-effects that would cause that sort of effect and it could be an infection which would need treatment.

Have you had the result of the biopsy yet? If not - why are they cutting the dose so fast? The Bristol group of rheumatologists say 60mg for 4 weeks, 50mg for 4 weeks and so on, a month at each dose down to 20mg. Of course - if you had been on over 40mg of pred for 5 weeks the likelihood of them finding giant cells in the biopsy is very small and a negative result wouldn't mean you have NOT got GCA.

Why do so many doctors rush to blame "pred side effects" for everything?

Eileen

i think they blame "pred side effects for everything because they really just dont know enough about the condition. which i find a bit scary as in a way its feels like we are guinea pigs in a lot of pain and having to learn to moderate our life styles in some cases quite dramatically.

Thanks for the welcome and yes I do agree that the biopsy will be affected, this was because I had to wait a fortnight for the biopsy appointment even though the rheumatologist wanted it done straight away. He wasn't happy to leave me without protection so started the pred. I don't get the biopsy results until next Monday but I did ring the hospital who have advised me on what to do and to ring back in the morning.

From what I am reading the pred seems to be blamed for a lot.

The other thing I am struggling with is the pulse thudding and keeping me awake and my blood pressure usually normal seems to be doing its own thing! I think I have a lot to learn but at least I can talk to people who understand. Thanks to both of you.

In Bristol they have set up a "fast-track" clinic so that query GCA patients are seen within one working day of referral and they request no treatment with pred beforehand. They have reserved biopsy spaces so the biopsy can also be done very quickly but also do not rely on the biopsy result - since in fact only about half of patients get a positive result. It is well known (in the literature across the world at least) that the biopsy is NOT entirely reliable since the presence of the giant cells that give the illness its name are not evenly spread across the artery wall - there are sections where there are none. If you are unlucky and they get the wrong chunk of artery - there will be no cells.

Unfortunately doctors don't remember that fact - they remember that the temporal artery biopsy is the "gold standard", not understanding that yes, if you get a positive result it is 100% right. But you might NOT get a positive result and that doesn't mean the patient hasn't got GCA. A new ultrasound scan has been developed that is very good - now all that is needed is the money to set it up and train the technicians. Don't hold your breath!

However - in the meantime: rest as much as you can. The pred won't help that I know but it doesn't matter when you sleep and resting is better than not doing so. By doing that you will help your chances of recovery - many patients have found that they only start to get better once they "give in" and rest. It isn't for ever - there are younger people who have returned to their very demanding jobs within a couple of years. But struggling on is the worst thing you can do. It isn't giving in - it is "managing" the problem.

Keep in touch now you have found us

Eileen

Hi Eileen,

I'll certainly keep in touch and I was very impressed with the set up you have there. This all started at the end of November and they thought I'd had a mini stroke which was ruled out after an MRI of my head and neck was normal. By that time I felt really ill and went to my GP who was sure I had PMR and put me on pred. I'm afraid I wasn't sure about the effects of the medication so was referred to a rheumatologist.

As it was going to take about six to eight weeks to see someone I went private and saw him in four days. He has been wonderful and did all he could to make things happen ASAP.

Any advice I can get is very welcome as right now I am confused and don't know how I should be feeling. Today has been a bad day and I have done nothing at all. If you say rest is beneficial theni don't feel so bad about doing nothing.

I'm lucky that my husband is retired and is doing everything for me. I hate bothering you and others so just say if its too much moaning.

Thanks again

Elaine

have to agree eileen is and has been very helpful and to a degree calming especially when not information is geven be health professionals

No - that's what the forum is for! If we didn't want to be bothered we'd not do it or we'd ignore you ;-)

The PMR and GCA UK northeast support group forum at forumup (you'll get a link by googling it or here

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316 )

functions more like a real-life support group and we have a laugh, a moan - even a scream when it gets too much. We even swop holiday and pet photos. We are informal and a bit nuts I suppose - but so is real life. There is a lot of info and support over there - come and have a look sometime if you feel up to it.

If you have a good rheumy you are lucky. If you have questions, ask - and the northeast support site (as opposed to the forum) has a lot of info in normal English as well as a DVD called "You are not alone" which explains a lot of what is happening to you for you and for friends and family.

Your GP could have sent you to the hospital as an emergency, not urgent. Urgent takes weeks, and emergency should be seen via A&E - but GPs often don't understand the difference. Has your private chap put you on his NHS list or does he just do private?

And yes - REST! It is a serious illness, not a common cold. You can't see it - but you are ill. I'm sure you feel it! And pred isn't half as bad as it is made out to be. If you have GCA it has almost certainly saved your sight - and managed well you will recover. It won't be next week - but you will improve and eventually get off pred. We have a Club Zero on that other forum and there are a few ex-GCA members.

Eileen

The day I went as a private patient the rheumy sent me to our eye hospital who gave me a thorough check to make sure my eyes were ok, then rang me as I came out to see how I'd got on. He later rang again to give me an appointment for his NHS clinic at the hospital. Within a few days I'd had all tests except the biopsy done. His name is Prof Bowman and he did say to ring if I was worried, so maybe I should ?

I don't think the GPs have much in depth knowledge really so we don't get the best advice.

I do have lots of questions and will certainly get on to the support group you mention and a good laugh is what I really need right now. I never knew just how much I would miss my little reception children at school. When I go in to take my sick note I have a group hug of 30 that is also a tonic!

Thanks again and I'll be in touch soon.

Elaine

hi elaine

i was diagnosed with gca 2 weeks ago and i had the biopsy a few days after , my eye is a bit swollen but not sore, the awful thing is that my eye has drooped which i wasnt happy about and have been told that it will take 6 to 9 months for it to get back to normal. i look on pred as my friend as it took away all the pain and the jaw claudication, and also took away the fear of going blind as this can happen very quickly. i was on 60mg of pred for 2 weeks and am now on 40mg for 2 weeks, then i will be going back to hosp, as i have been asked to go on a 3 year trial of a new drug called tocilizumab. i am also in the north east and the support group is fantastic,everyone is so helpful and i have phone no's i can ring anytime of night or day, so get yourself on to the forum asap.

the best of luck and i hope everything goes well for you

gladys x

With regard to the biopsy Elaine I'm not sure a rheumy would be as good as the surgeon's team who actually did it though he should be able to tell you the best action - may even ring the surgeon himself.

You are quite right about GPs - I asked mine in the northeast what he would do about GCA (we were already friends as much as the doctor/patient relationship) and his reply was "Give a big dose of pred and pray..." Yes, very helpful!

What angers me is the pushing to get GPs in the NHS doing things instead of the hospital - which only makes them more rushed and needing to know about more things and no time to learn so NOT knowing or only knowing superficially. Here (northern Italy) my GP has no appointment surgeries, you can make an appointment outwith those hours if you need to and she does frequent HOUSE VISITS for her really poorly patients. Gosh!!!! Her role is to hand me a prescription to make a hospital appointment with an expert in the field for the things that she doesn't consider herself qualified to do. She worked in rheumatology before doing her GP training so is perfect for me, our previous GP was a diabetologist.

The group who got the PMR and GCA charities up and running in the UK are working hard on getting through to doctors and providing support in the meantime. 7 or 8 years ago there was nothing - it is very different already and a load of us spend a lot of time on the computer dealing with one aspect or another!

If you can't go out and garden because of PMR or GCA - there can be role in the support groups. Everyone plays their part - some of us know about the theory and medical stuff, others ask the questions and make the points that someone else will see and say "Oh - that's me..."

Eileen

Hello Gladys,

Thanks for your post, it's reassuring to read other people's experiences on this and to know there is good support out there. I'm sorry to hear about your eye, I hope it does not cause you too much discomfort. The trial sounds interesting and hopefully fruitful. Have you started it yet?

I feel as if I'm on a roller coaster, one minute I'm ok and can go out, next I'm unable to move around and feeling awful. Is this right?

Today I will get on to the forum so thanks again, I'm sure we'll talk again.

Elaine x

Well today my head feels much better and as I see the surgeon on Monday next, I will ask my questions then I think. Do you live in Italy? It sounds like a much better option to our system but then I think the NHS is seriously flawed and not what it was set up to be.

Yesterday I didn't leave the house as I was far from myself but today I feel more positive, maybe because I don't feel so alone and as usual we are probably much better off talking to someone who actually understands how we feel.

I'm sure there will be something I can do to contribute so ill have a think about it.

Elaine

I'm not sure I'd say it is "right" - but it is absolutely normal!

You wouldn't expect to have flu (proper flu I mean) or an operation and feel perfectly OK 100% of the time soon afterwards. You can't SEE the GCA but it is there making you feel ill and the pred takes time to remove the cause. Then you have to add in the effects of the pred on the rest of your body - that doesn't help either but without it you would feel even worse, believe me!

And I bet on the days you feel a bit better you go and do more don't you? Take one day at a time and it does help if you don't plan to do anything too much two days in a row. If you have got something planned and then don't feel too good then say so - the world won't stop if you don't go to a coffee morning or go shopping NOW. Everything you do is an effort for your body at the moment - even standing rather than sitting. And noise can be VERY tiring. Until you are well it is No 1 - you, No2 - you, No3 - you. It sounds selfish - it isn't. The sooner you are better the better it will be for others too. It can't be hurried and if you try to hurry or overdo things or carry on as normal you will feel worse. And your family and friends have to learn that too.

It won't be for ever - but it will be for some time to come and we're talking months, possibly a couple of years altogether, not a few weeks. You will get better, just not quite yet. One of the ladies has got off pred and is back at her very demanding shiftwork job in less than 2 years - but until she accepted she needed to rest and not worry she didn't improve.

Eileen

hi elaine

i dont live in italy. i live in the north east of england,which has a high quality of care for gca, so i am very lucky. as soon as my gp found inflamation in my blood she sent me straight to hosp as an emergency and i was seen to immediately. my eye isnt causing me discomfort but i find it embarrasing to live with. i will be starting the trial next thursday and will let you know how it goes. i also have days when i am fatigued, and have to sit around which i hate as i have always been a very active person. i have started going back to my classes this week but have been told to take it very slowly at first, but we need to start exercising to save our bones from deteriating.

keep in touch

gladys x

Elaine - I live in Italy, but in the north so it is a bit like living in Scotland in terms of the relationship of the health systems! We are an autonomous region so different. Italy is rather different.

I was living in the northeast of England, in Durham, when it all started and - frankly - it was not particularly good. Gateshead and Newcastle are just round the corner - but didn't include us. The main difference here is that my experience has been that if the GP isn't sure - you are sent to the specialist in the hospital. As an emergency you are seen within a couple of days and immediately if you are sent to A&E. There is no waiting for weeks and weeks - in fact, if you would have to wait more than a couple of months you are reimbursed the cost of a private consultation. But a private appointment only costs about 70 euros (not hundreds like in the UK) and if you need tests the doctor you saw privately calls your GP and tells them what referrals to write. It isn't free at point of receipt, I pay for most blood tests and my dexascan was about 35 euros - but I didn't have to fight to get it and I am on a very expensive version of pred without having to ask permission since it is approved for use in "rheumatism".

Gladys was very lucky in having a GP who recognised there was something up - it is far from common and if you have the symptoms without high blood results you can often have serious problems getting a diagnosis. And about 1 in 6 patients DON'T have raised blood levels at the beginning, some never do whether we are talking about GCA or PMR.

I and my entire family have worked in the NHS, one daughter is a nurse, the other a paramedic, and we would defend the NHS with our dying breaths but it has become a pawn of the politicians. When it is good it is very very good. When it's bad - it's horrid.