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

Hello Gladys

As you live in the North East, I'm wondering if you've come across the North East PMRGCA support group? They hold meetings at two venues, one in Gateshead and one in Middlesbrough. If you're interested, you can find a link on the pinned threads here.

MrsO

Hi there

It seems I'm not in a particularly good spot for getting things done quickly but I intend to keep up to date myself to make sure things are as good as they can be.

Last night and today have been horrendous ,I've felt so awful I was worried. My pulse was racing till three in the morning then on and off all day and blood pressure all over the place. The GP did an ECG today which was satisfactory but pulse was fast. He has reduced my pred to 20mg and told me to get help if I don't improve over the week end.

He said he can't give me beta blockers because I have asthma but I don't want any more pills anyway. So sorry I'm having a moan . My nose is sore and bleeding and my eyes are dry and I am exhausted. The GP has said complete rest is an order but I don't think I could do anything anyway.

I have registered with the other support group and am just waiting for an email. If it hasn't been so late last night I was on the verge of waking up my daughter but managed to fall asleep in the end.

I hope your all doing ok I'm trying hard to get myself together . Sorry for the rant, does anyone have these problems ?

Elaine

Elaine - we all have days where we want to shout and scream and have a paddy so don't feel at all bad about it. And that is part of the reason for these forums - when you come here the people you are chatting to (or shouting at ;-) ) have been there as well. Your family and friends haven't - and since they can't SEE your illness it is difficult for them to understand though some can be very good. Both the illness itself and the pred can make you feel very fragile and volatile - I only have PMR but it really made my mood volcanic sometimes!

Anybody would think the only medication for BP problems was betablockers! I'm sure though that your BP was possibly all over the place because you were panicked and resting will help that. If you have any symptoms which could possibly be GCA do go to A&E quickly - IF it is GCA you have the GP has taken a bit of a risk with reducing your pred so far so soon. If you do go, make sure you have the details of your rheumy consultant with you and try and get them to contact him.

Try not to get upset about not being able to sleep because that will just make it worse. Many people sleep erratically when on pred or ill with anything - and you have pain and discomfort to contend with as well. If you are so restless get up and do something else to occupy your mind. Lying awake in bed is the most awful feeling for increasing worry and we know several ladies who have moved out into the spare room so they can read and surf the net!

I noticed an Elaine on the other forum - so see you there soon.

Eileen

Thank you Eileen,

I think some of the symptoms I was getting were down to panic because I was feeling so weird.

If it comes to the point where I need to get help ill remember what you said.

I had had problems previously with pred side effects when the asthma wasn't controlled properly and that's why the GP was wary but he also said he needs to watch me because of the risks of reducing too quickly.

I am already in my own room because of being awake a lot and I take my I pad up with me so I can try and take my mind off things that go round in my head.

It's clear It will take time to get used to this and I know I will in the end. How would I know what sort of things would be down the the GCA ?

Anyway I have been falling asleep but don't want that to happen yet so I'm going to find something to occupy me for a while

Good to hear from you and looking forward to going on the other forum

Elaine

Typical serious GCA symptoms would be feeling flu-ey, a new, really bad headache, painful scalp (your hair can feel as if it is lying wrong and using a brush or comb hurts), visual symptoms such as black patches or even total loss of vision even briefly, a feeling as if there is a curtain in front of your eye. Any of those - straight to a doctor, don't wait for an appointment.

If you are sleepy - don't fight it but just sleep when it works. That's better than trying to wait for "bedtime" because then you might not get to sleep!

Eileen

Ok thanks a lot Eileen, at least I know what I'm looking for and it's better that I know then I won't be worrying about things I don't need to.

I'm so glad I found this site, it's good to get good constructive advice.

Thanks again

Elaine

Hello Elaine and I 'm so sorry to hear you've had another bad day - so disappointing after feeling somewhat better yesterday. Hopefully, if you manage to get a better night's sleep tonight you will have a better day tomorrow, but don't ever fight it if you feel tired long before bedtime. In my early days with PMR and GCA, I used to sleep most of the day so that at least if the nights were bad I knew I was at least catching up during the day. Fatigue is a big part of having an inflammatory illness and after the usual initial euphoria on high dose steroids they then have their part to play in adding to that fatigue. I once even fell asleep at our friends' house whilst we were all chatting which was a first for me.

I felt much like you have described soon after starting the steroids, feeling very weird with heart beating all over the place and ended up in A&E on one occasion where arrythmia and high white cell count were diagnosed. The worst of the head/jaw pain, the night sweats and sickness/nausea disappeared within hours of taking my first dose of Pred. I continued to have fleeting pains around one eye in particular for some time, plus blurring of my vision. It does improve as you reduce the dose, I promise, but I was very lucky in that I was able to reduce down from the very high doses in textbook fashion with blood tests returning to normal and staying there.

Give yourself lots of TLC and take each day as it comes, knowing that this is an illness that is not permanent and you will recover. Also count your blessings that you have a hubby who is looking after you - I don't know where I would have been without mine in the early days. Hope you feel better soon.

MrsO

Hi mrs o

You'll never know how relieved I was to read your post this morning. I'm still learning and knowing you understand what I am describing has reassured me no end. Even though the GP has been very kind and helpful they can't know first hand how it feels. He did say don't just put up with things just tell us and if I'm worried week ends go to A and E.

I slept all night and have managed a walk to the shops and apart from shaking I'm not too bad. I too still have a little pain around one eye but I think it's partly from the biopsy and I have some degeneration of the 1st and2nd vertibrae which often affects the same side and its playing up at the moment so doesn't help.

It's difficult focusing on yourself when all you've done for years is live in overdrive but this forces you to rethink and your right without a good husband it would be so much harder. I keep telling myself lots of people are so much worse of than I am and most of the time it helps. Yesterday I think I was more afraid than anything so thanks again for the info, it really helped.

How long have you had this and how are you now , far too much said about me!

Elaine

Elaine

Yes, it's a real learning curve following a diagnosis of PMR. Those of us who have travelled that road and got the proverbial t-shirt are only too happy to try and support others from our own experience, but we do have to always bear in mind that everyone is different in both the severity of their condition and their response to steroids. Plus when other health problems are involved it can add to the confusion over what is what, such as your spinal degeneration. I, too, have problems with my spine (spondylolisthesis - slipped vertebra) which can cause long bouts of sciatic pain. Whilst on steroids, I experienced a sudden bout and because I wasn't sure whether my continuing pain was down to my spine or to PMR, I stayed on the very low doses, probably for longer than was needed, but I didn't want to rock the boat just in case it was PMR. All in all, I was on steroids for 5.5 years but luckily mostly at the lower doses, and both PMR and GCA have been in remission now for more than 18 months.

I have found that it helps to don a support girdle for a few days when my spine plays up. So if you experience any pain in the lumber region, perhaps that might help you.

I wish you another good night tonight in the hope that you will have another good day tomorrow. Keep it up.

MrsO

Hi there

Well yesterday was a really good day and I felt more like myself. I am getting as much information as I can to try and make it through this in the best possible way. Thanks to you all I'm getting there. Today I'm tired and shaky so I'm staying right here as I have lots to be doing from where I am sitting.

I'm wondering if its possible I've had this problem for quite a while without knowing. I was diagnosed years ago with fibromyalgia which made life very hard for about five years but since then I only had relapses of it if I was extremely tired or ill. When this first started in November I thought the fibro was back but realised it was different so after being investigated for a mini stroke I eventually ended up in the right place. It's all a bit confusing when other symptoms get in the way.

I have an appointment tomorrow with the ophthalmologist who performed my biopsy so I'll see what she has to say. I'd also like to look into how food could help. Like you say patience and positivity is needed and I need to regain my sense of humour!

Could anyone tell me how long it usually takes to get the email from the administrator of the other forum takes to come through!

Hope everyone is good.

Elaine

Elaine - I've been told to tell you to check in your spam folder if you haven't had your email from the forum - and that it is sent out from the forum itself so we have no control over that. You can also try logging on using the details you gave, being careful to use the same upper/lower case letters and spaces and you will probably get on straight away.

Eileen

Thanks Eileen

I'll have a look now

Elaine