In need of information as newly diagnosed

[Rainemaris]

Hello, I'm 57 and was diagnosed with giant cell arteritis three weeks ago. Initially my GP put me on 30mg of prednisolone and a week later upped it to 60mg a day. She has also diagnosed me with pmr as symptoms are severe and has referred me to a rhumetology consultant, although said could take a while for appointment to come through. Just wondering if anyone can give me some advice as I feel absolutely terrible. Apart from the horrendous pain in my neck and shoulders and blurry vision, since being on the medication I can't sleep, keep vomiting, have a constant headache that pain killers don't work with, and my hair has started breaking and falling out. I had breast cancer 6 years ago and now in remission but this is making me feel so I'll and week. I read should feel bit better after being on medication for couple of days but since it was increased feel even worse. Back at go in another week to see how I'm getting on but was wondering if anyone has any advice as I'm feeling so low and desperate, thanking you for any info you can give as it's all very new to me🤔

[Devoid]

How was it diagnosed? You should see a rheumatologist as urgent. I had raised crp and Sed test and was started on steroids and saw the consultant the following day. Now realise how lucky I am. I found the medication very difficult, initially the horrendous head pain eased but still felt horrendous and then all the side effects of steroids. Rest seems to be really important, I found I needed to lie flat , just sitting down didn’t seem to be enough.

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

If you are still having neck, shoulder and head pains after 2 weeks on 60mg then maybe you are not on enough Pred - they should be diminishing by now. Although high doses of Pred can make you feel very weird and disorientated.

Or are you trying to carry on as normal? You can’t, Just because you're on the medication doesn’t mean the illnesses are cured.

The blurry vision maybe a side effect from the Pred (although it can also be GCA), as is the lack of sleep, but not sure about the vomiting- that’s not usually a common one. Think that may need a bit more investigation - but if it is the Pred then your GP should be able to give you something to help.

Your hair problems are more likely to be due to the fact that you have been ill for some time, although Pred doesn’t always help initially.

Your GP should be requesting an URGENT appointment with Rheumy - GCA with any sight issues should be treated as an emergency - you need to see your GP tomorrow.

[SnazzyD]

Hi from the 50’s GCA and breast cancer camp. High dose Pred certainly made my eyes unable to focus properly especially with walking past things and going from one depth of field to another. My GCA eye symptoms were black spots when exercising hard and in the end my field of vision just got smaller and smaller. . My GCA symptoms went within 2 hours of 60mg of Pred but the side effects kicked the next day with feeling weak as a kitten, jittery yet drowsy, muddled and a weird breathless feeling without being breathless. This all reduced as the dose went down, but the first 6 weeks on 40mg wasn’t great and I felt worse than before I had it.

However, to know what is causing what is a bit complicated in your situation, particularly if you’re vomiting. You may be on the right dose but you have no idea how much you’re actually absorbing which may be not enough. Vomiting in itself isn’t normal, did you get it from the start?. Are you taking uncoated Pred and if so, do you take it with a decent amount of food? My stomach was very sensitive to it, even with stomach protecting meds, and ended up on coated Pred.

I think it is time to seek urgent help as something isn’t right and needs sorting out.

[Rainemaris in reply to SnazzyD]

Thankyou will definitely go back to doctors tomorrow, really appreciate your advice.

[PMRpro Ambassador]

Your GP should be getting you an EMERGENCY consultation with a rheumy - GCA is a medical emergency and should be dealt with in the same way a heart attack or stroke. If all else fails, she should send you to an A&E in a hospital with a rheumy department with a referral letter. (Urgent referral just means to be seen sooner than routine and in the current climate that may still be 2 to 3 months or even longer). And of she is thinking GCA - she should be seeing you at least once a week to see how you are.

If you are this unwell after 2 weeks on 60mg pred then this has got to the stage of needing emergency care. As Snazzy says, if you are vomiting then you don't know how much pred you are absorbing and that can actually also be a symptom of inadequately managed GCA.

In the meantime you could try calling 111 and ask to speak to a doctor for advice.

[Rainemaris in reply to PMRpro]

Thanks I was wondering if being sick didn't help with the response to the medication, makes sense, will get back to doctors thank you feeling so weak it has helped to have some feedback to motivate me!!

[Rainemaris]

Thankyou I will go back to doctors tomorrow, I don't like making a fuss but really feel unwell and something bamiss, many thanks for advise.

[PMRpro Ambassador in reply to Rainemaris]

If you feel any worse - don't wait for tomorrow. This could be something else plus the headache and sickness do concern me.

[HeronNS in reply to Rainemaris]

You are not making a fuss. You are the very reason there's an emergency department. Go. If you can, get someone to take you and stay with you.

[Blearyeyed]

Glad to read you are going back into the GP tomorrow to discuss this.

You definitely seem to be having some severe side effects if you are vomiting , it sounds like you body is finding it hard to adjust to the increase in dose .

The continued blurred vision and numb head pain and dizziness was something that I experienced for a few weeks and also nausea.

It did settle down over time , but in your case , if you are also vomiting , you will not be getting the full dose you are prescribed and it will be having an impact on how well the Pred can get your symptoms and inflammation under control.

As you have GCA , rather than PMR , you need to be sure that you are getting the required dose early to help prevent vision issues and increased head symptoms , so letting the GP know early that you are have difficulty keeping your medication down is very important.

You hair issue may be that you are generally run down because you have been coping with inflammation for some time and your vitamin and mineral levels have reduced. The vomiting will have made this worse , so , after you have dealt with the important and immediate issue if vomiting and your stomach has settled , begin taking a good vitamin and mineral supplement and this will help . You should have been given a Vit D and Calcium supplement by your GP to stop deficiencies in these too.

Are you taking your Pred with food , probiotic yoghurt and a teaspoon of local or Manuka honey about 15 mins before you take the meds is good as it costs the stomach and reduces acid reflux that might cause the vomiting.

Eating lighter meals , and having a little yoghurt portion before eating or taking any medication would help too .

Drinking ginger tea helps settle the stomach , and increasing your fluids in mineral water and green tea, in general , helps as some of us suffer from internal dehydration because of the inflammation , this will also reduce any stomach acid problems you may be having.

Turmeric supplements ( the pure variety without black pepper , and only one tablet not the recommended two a day ) works well with the yoghurt to settle your stomach issues if you are not on a PPI ( Omeprazole etc.) .

I don't know if you were prescribed a PPI against acid and stomach issues , people on much higher doses sometimes do need it. You should also request coated Pred , even if they don't usually prescribed it from your Practice , as vomiting is a valid reason for requiring your steroids in that form.

If you haven't tried the yoghurt yet , you can try it first , but if the vomiting continues , you may be one of those people who really does require a PPI to help keep your medication down.

If you do not get control of the vomiting and you suffer from more dizziness , breathing difficulties , swelling in the hands , feet or lips and have problems swallowing you should always let your Doctor know as soon as possible because it could indicate that you have an intolerance to your medication and may need an alternative .

Take care and please post an update when you know more.

[Rainemaris]

Thanks for the good advice I will update soon