Had temporal arteritis for 2 months at least

Bones, joints and muscles
1

Started by feeling faint and unwell. Couldn't eat anything. All food tasted bland like cardboard. Same evening I was shivvering and feeling really ill. The headaches started the next day. Very severe. When I stood up I couldn't move until the pounding stopped. Saw my GP 3 days later and he told me to go for a blood test the next week. Nurse took blood and results came back 4 days later. I'd suffered for 2 weeks by then. GP rang and told my hubby to get in for a prescription quick and I had to take 40mg Prednisolone immediately as it was a medical emergency.

I'm 54 so I didn't think he took me seriously enough considering that I could lose me sight with this. Reduced my steroids to 30mg last week and I went for a new blood test today. Results will come next week.

Today I went to the emergency dept at local hospital due to severe chest pain that radiated round my upper back and jaw. ECG showed no heart problem so it must be the Temporal Arteritis. Read today on internet that it can cause heart attack if those arteries are affected or a stroke.

Had tender scalp with this but had it before without headaches over a few years. Still getting headaches now too so I'm hoping GP is giving me strong enough steroids.

Since starting this I'm a bit dithery and weak. Don't know if it's the steroids or the condition. It's worrying, painful and a nuisance. Hope it doesn't last too long. :roll:

2

Vivien - your feeling of being dithery is probably due to the high steroid dose - I was very disorientated and had difficulty focusing when first on the high dose of 40mgs 15 months ago and the rheumatologist told me it was probably the steroids. This should improve as you reduce the dose.

Hope this helps and good luck.

Mrs O

3

Hi Vivian,

I had perfect health ,went walking ,swimming and the gym everyday ,I am 66 years old slim and considered myself fit ...here is my experiance of the last 6 weeks .

Started with what felt like a congested up head cold ...headache unbelievable ,went to GP after 1 week ,gave me antibiotics and told me to take pain killers ,another week goes by ,no improvement ,headache and pounding when I stood up became unbearable when pain killers wore off.Again to GP different antibiotics ,they made me feel sick after 4 days ,still head aches unbearable and throbbing ,pain in my templles ,face ache ,jaw stiiffness ...back to GP who this time gave me anti-inflamotory and same painkillers ....try for 4 days and back to GP as no improvement ...pounding when I stood up was affecting my legs ...have to stand still for a few seconds as they felt weak...back to Gp who then gave me a different antibiotic ....back to Gp after taking them for 5 days with no improvement ...by this time I was sure I had a brain tumour ...or something simliar ....he told me ..his next clinic for blood test was the next week ...and to make an appointment ...at this time he causually mentioned the temporal nerve.

By Sunday 6 days later with scourching pains in my head , vomitting and constipation from too many painlillers .my husband insisted I go to the hospital ...the GP there examined me and put me straight on 40 MG steriods ..took a blood test and said he thought it could Giant Cell Artedritis.

Went to my GP on Monday the next day for his blood tests ..I explined what had happened at the Hospital ... he was mad at me for going to the hospital..told me I had wasted the resources of the NHS and now he couldn`t do all the other blood tests as I had taken steriods ...the hospitsl report had not as yet reached my GP and that was another he now had to do chase it up along with all the other things he had .. I was so upset I burst into tears and left.

Later the same day my GP rang

me and very quietly and softly told the test has come back positive for Giant cell and I am making you an urgent referral to see a specialist for a Biopsy ..apparently an important procedere as this can show that`s what it is .

The GP in the hospital had explained the blood test would show if there was an inflamation in my body in the arteries that my immune system was attacking with chemical platelets...as the the symptoms indicated it could be Giant Cell ....he also wrote down the name of the condition he suspect it could be and gave me the first 40 MG dose straight away .

Once steriods were started my headache went in a few hours ...the relief had me in tears and I feel so much better ...I am to reduce the dose after 1 week to 20MG and then have another blood test ...there can be side affects to the Steriods but it seems that it is more usual for them to appear after long term use ...the diagnosis is good and steriods are reduced if the blood test show improvement until a maintainace dose is reach ..treatment can last as long as 1 or 2 years.

....It is vital however that steriods are started immediately if a GP so much as suspects Giant cell and then waits for the results of a blood test ...if he is wrong ..the few steriods will not do any harm ..

My GP took 5 weeks before he even thought of Giant Cell ..and then he was going to take another week to do blood tests and another week before he got the results ....this would have totalled 7 weeks ...frightening thought ... I had looked up my symptoms and had come to the conclusion myself they could fit this condition ...but of course I couldn`t tell my GP that ....I will if anything happens like this again in the future ...I so appreciate my wonderful husband who insisted I went to see the out of hours GP in our local hospital.

I am changing my GP as I have lost all faith in him ....it was MY life he was risking and I do believe if it were his wife this test would have been done straight away ... the GP in the ho

4

PS,

I have discused with my GP`s nurse my blood test due next week ...after my reduction to 20 MG and she has agreed to take it on Thursday and get the results by Friday ....this is the normal thing as it is important to know straight away if the reductions are working ....so please Dear Vivian do not wait 4 days fro a blood result that takes overnight to do .

They just have to put in a centralfugal force machine and see if the red cells fall to the blottom and count how many .

I coulldn`t stand now to wait for 4 days for results after all if they are good ...doesn`t it make you feel so postive??

Go on tell them that you need to know for peace of mind .

Big Hug

Silkysoft

5

Very similar experience here but when your 46 no one belives you've got this disease. Have gone blind twice but sight has returned, very frieghtening. If you want to chat call me on ***********

Jonathan

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6

Please can anyone help me with this - I have been on steroids now for four months - started at 60mg and now down to 20mg.  Have been told I will need to take them for at least one year.

Side effects - the tiredness is becoming unbearable but the acid reflux that I am experiencing is worse.  Last night was my second really bad experience.  It was so bad I was choking and my throat actually feels burnet today.  I hadn't eaten anything to cause t so am putting it down to steroids.  I am already taking 40mg of Omeprazole daily. 

I am really feeling unwell at the moment and rather than wasting the doctors time was hoping that there may be someone out there that has had the same experience and can help.

Jackie

7

Jackie, you really do need to see your doctor for this. There are other things you can take which might help more and if uncoated Pred tabs are to blame then you can be prescribed coated ones which are more stomach-friendly.

It does beg the question - are you taking the steroids with enough food?  That is so important and if you have also been prescribed calcium and vit D tabs, be sure not to take them at the same time as the steroids.  We have also learned on here that it is good if you can take yoghourt first thing which lines the stomach and also lemon juice in hot water  can be beneficial - the acid juice turns alkaline in the stomach.

You do need to get this sorted out though.  I know - been there and done that!

8

Thank you for the response.  I am taking the coated Pred tabs so they are supposed to be less harsh on the stomach. 

I don't usually take them with food so maybe thats the problem.  I have been taking them for four months now so the accumulation could be causing it.  I do take the calcium and vit D tablets at the same time too so will try taking them at a different time.  I will try anything at this stage.

Did you suffer with tiredness too.

Looking on the positive side though - no headaches (was diagnosed with temporal arteritis).  But feeling the way I do today not sure which is the lesser of two evils!

Thank you again for the advice

 

9

The coated steroids should be fine as they are absorbed further down the gut, however I do take mine with food as a kind of safety valve! 

We usually suggest steroids for breakfast, calcium and vit D for lunch and tea/supper.  The calcium prevents the proper absorbtion of steroids, so they should be taken as far apart as possible.  Calcium should also be taken with a little fat - just a splash of milk in a cup of tea is enough.

You should be taking the omeprazole first thing in the morning before anything else? But if you find you are still having problems after trying these things, you really must see your doctor again.  Continued acid reflux is not the best condition to live with and there are other drugs possibilities which might help.

Yes, I suffer with tiredness - Pred, PMR/GCA, stomach problems, the weather and several other medical conditions all contribute to fatigue.  It can be managed so that it does not make itself quite such a problem - but it can take a few lessons to learn how.  

10

Please tell me how your blindness came on and how long it lasted.  My mother has just been diagnosed with GCA and has lost vision in both eyes.  She is 81 yrs and this is devastating to her and us all.  Can you please share your experience and how you got your vision back?  Mom was put in the hospital had biopsy and was on IV steroids for 3 days and has since been on 60 mg prednisone per day.. Thanks for your sharing