Feeling frustrated

[Whatawonderfullife]

I don’t often write on here but you guys seem to be the only help I have. I apologise now for the long essay.

I have been on Pred since October 2019, my GP thinks I have GCA. It began with severe headaches, had been feeling quite unwell, flu like symptoms, when I woke up in the morning feeling really stiff. My vision was blurred and I had a stiff jaw that was difficult to open to eat and uncomfortable to chew. I used to run between 5k and 10k, 3 to 4 times a week but I was finding I was losing my stamina, having to walk more than run and had headaches that were different to my migraines and would not go away. I would feel so tired at work and found it hard to keep going. My bloods were very high When checked and I was anaemic and when checked a week later, in A&E, they were higher again. I was put on 60mg Pred and within 2-3 days I was feeling so much better!

When speaking to my Rheumatologist, I’m 53years old, I’m too young to have GCA and even though the symptoms are GCA there’s no proof? I had a TAB, which was of insufficient length, so negative result. I had tests and scans but I’d been in Pred for more than a month so all were normal. If I have a flare,I obviously don’t because my bloods come back within the normal range. My rheumatologist wants me off of the Pred, which, I think we would all like that, I’m only 53. I had a set back about 3 weeks ago. I can’t seem to get below 10mg. Alternate days of 10mg and 9mg. The symptoms seem to return, jaw pain, pressure headache, sensitive scalp, neck and shoulder pain and generally feeling unwell, fatigued, to mention just a few, they don’t come on all at once but creep up on me over the days/weeks. This time I had a few minutes of sight loss in my right eye, and a dulling of colour, thank goodness it returned. GP told me to go back up to 60mg Pred and have a blood test the next day, it was normal. My rheumatologist thinks I may have a trapped nerve in my neck and wants me off the Pred ASAP as it is just masking what the problem is.

So I’m tapering and I have a follow up appointment in 12 weeks.

Any ideas?

[PMRpro Ambassador]

I would find myself another rheumatologist who is not blinded by your age - because over 50 is the usual criterion and there are warnings all over the medical literature about missing GCA because of being fixated on age because it does happen in younger patients. Or do you have a good eye clinic with emergency cover within reach?

There are people who don't mount the acute phase response (which is what raises the markers) while they are on pred at any dose. You may be one. Rising markers do often lag behind flares and it can be by months. If it were a trapped nerve one would assume that pred wouldn't relieve the symptoms - and your vision is precious, your current rheumy is playing russian roulette - with your sight.

spine.org/KnowYourBack/Cond...

On the basis of this article - I would be sticking with my GP until I had had an MRI looking for the "pinched nerve".

[Whatawonderfullife in reply to PMRpro]

Thank you for your quick response. I usually have my husband to support me but unfortunately he was needed elsewhere today. I felt like I’d been told off for taking my GP’s advice and should not take any extra Pred.

It seems that I’m going to have to be strong and stick up for myself. Hopefully, I won’t need to

[GOOD_GRIEF]

Yes. If you have any visual disturbances whatsoever go directly to A&E immediately and don't wait to see if it gets better. Make sure you stress that symptom to the medical staff as potentially blinding as you have a history of GCA, and go on to describe your other symptoms.

You may be on the young end of the array for age, but age is not a determinate. Symptoms are the determinate. Current diagnostic guideline have revised the lower age range down to include 50, and recognize rare cases in the late 40s.

This is not a situation where you can simply lay back and let someone else take control. You must advocate for yourself. Make sure you have drafted a friend or family member and fully inform them of the symptoms and treatments necessary to preserve your sight, just in case you are not strong or well enough to advocate for yourself.

Lastly, find yourself another doctor and medical team who is less focused on reducing pred and more focused on treating your condition. You may have to go far afield or you may have to go private, but saving your sight must be your paramount concern.

[Whatawonderfullife in reply to GOOD_GRIEF]

Yes, I will go straight to A&E if there is a next time. Thank you for your advice.

I find it is so difficult to get below 10mg.

The first time I met the rheumatologist, he handed me a leaflet, pointed to the picture saying that I was not in that age group 🤷‍♀️

[GOOD_GRIEF in reply to Whatawonderfullife]

If he likes reading material, hand him this:

academic.oup.com/rheumatolo...

[Whatawonderfullife in reply to GOOD_GRIEF]

Thank you, maybe it will help with his lack of knowledge. I have saved it, just in case I need to use it as reference to my case. 😊

[PMRpro Ambassador in reply to Whatawonderfullife]

Treat the patient in front of you - not the picture in the leaflet ...

[RevSmallwood]

Hello. Can't comment on GCA.

My Rhumi is going down the pinched nerve route too and is desperate to get me off Pred.

Supposed to be getting scan too but with the NHS in the state it is at present, can't see that happening any time soon.

I have no confidence in Rhumi. Being new here I have learnt a lot, mainly to take the amount of Pred as needed to reduce the suffering to a doable level until the "experts" come up with an alternative solution.

All the best

[Whatawonderfullife in reply to RevSmallwood]

Thank you, I agree, I have to try to be strong even though I feel quite vulnerable. It seems the rheumatologist doesn’t seem to take this very seriously. Meanwhile we are living it.

[DorsetLady PMRGCAuk volunteer]

Shoot your Rheumy! Or at least give him a kick where it hurts most! ....and stick with your GP who seems to have a better idea of GCA than the ‘expert’.

I was told I had a trapped nerve, six weeks later I’d lost sight in one eye! No Pred.

Won’t repeat what PMRpro has said about blood tests and age - just agree with her.

[Whatawonderfullife in reply to DorsetLady]

Thank you DorsetLady, to be honest, when I came off the phone I felt how you have reacted, then I start doubting myself.

It’s quite scary how almost tunnel visioned the rheumatologists seem to be!

Thank hank goodness my GP seems to know about GCA! Thank goodness I have HealthUnlocked too! I was feeling quite at a loss earlier today.

[DorsetLady PMRGCAuk volunteer in reply to Whatawonderfullife]

Don’t doubt yourself....despite being the experts, it really makes me cross when I hear stories like yours and the nonchalant way some Rheumies are...not all obviously, but far too many it would appear.

My Rheumy was very offhand about my GCA, and I think that was because I’d been diagnosed by a young and interested Ophthamologist in A&E.

He seemed miffed that he hadn’t been involved in diagnosis...only saw him a couple of times ( first time 7 months after diagnosis when GP & I had already decided on a tapering plan ) - then he referred me back to GP.

In my opinion, no loss!

[Whatawonderfullife in reply to DorsetLady]

I’m sorry you’ve had a rotten time. It’s awful to think you have lost your sight in one of your eyes, it seems, because of a rheumatologist’s power struggle.

Why are they so desperate not to look at all the symptoms and accept what they see?? I think I may have a rocky road ahead of me.

Thank you for your help.

[DorsetLady PMRGCAuk volunteer in reply to Whatawonderfullife]

Actually it wasn’t a Rheumy at fault, I hadn’t been referred to one - it was my GP going off completely on the wrong track - despite the “classic” symptoms!

[Nerak12]

Oh dear!! Poor you! You have my utmost sympathy. As if all the pain you’re dealing with wasn’t enough having to fight your corner is the last thing you need. I’m in the same boat right now, so I appreciate your struggle. You’ve been given good advice by the others here on the forum. I’m afraid you do have to keep pushing and if you don’t get the answer you need go elsewhere. There are always other options. One thing I am learning is that you can’t be afraid of upsetting people when it’s your own health that’s at risk. If you need your husbands help tell him. You are the most important person in this journey. Stay strong. Get as much rest as you can. Keep pushing. Good luck. Kia Kaha xx

[Whatawonderfullife in reply to Nerak12]

Thank you, it does seem that we have to know our stuff to fight our corner! I’m great for doing that to help others, not so good for myself. However, with the support of hearing all your thoughts, I feel stronger and will fight. After all, it’s not their sight and health at risk. Thank you again

[tangocharlie]

Let me check I've understood this right. You have classic signs of GCA but someone who is supposedly an expert in the condition but has probably never seen a real case in their life as they showed you a picture on a leaflet instead of talking about their vast experience of dealing with cases is ignoring that? I wonder what leaflet it was anyway? He can't have read his own profession's guidelines or published research papers on treating GCA either as they all say that although it predominantly affects older people the cut-off age is over 50, which you are. If I had a £ for every time I've heard 'My rheumatologist wants me off of the Pred' I'd have my villa in Spain by now. The evidence I've read is the dangers of l-t steroids are not as bad as many doctors fear. Oh what a difficult position to be in. If it were me I'd get another opinion eg Dr Dasgupta or Dr Mackie. It's just too dangerous to take the risk of under-treating if it is GCA.

[Whatawonderfullife in reply to tangocharlie]

Hi tangocharlie, I am living in limbo at the moment. I’m not sure what to do or what to believe. It’s been nearly a year now, each time I try to taper below 10mg, the symptoms almost start to bubble under the surface until finally they are there, smacking me in the face!

The leaflet was on GCA, I did bring it home but I don’t think I have it any more. The front cover was of an older person, sat in an armchair I believe.

I hope you don’t mind me asking, you’ve all said to go to another professional but how do I go about this? I was thinking of speaking to my GP to see if he can help with my confusion?

I cannot believe that the symptoms I have been experiencing could all be from a trapped nerve. 🤷‍♀️

Thank goodness for health unlocked

[tangocharlie in reply to Whatawonderfullife]

When I had a problem with a rheumy I went to my GP and said I didn't want to see that rheumy ever again and could he refer me to Dr Mackie, which he did. I'm not sure of the rules for referring outside of areas now but you could ask, or at least explain your dilemna. Alternatively, if you have a clued up GP you could just stick with them Re not being able to get below 10 Pred I personally wouldn't worry, as the Quick and Kirwan method keeps patients on 10 for a year so there must be a good reason for that. If you can't be referred to her the other options would be to go private but you would need to find someone who actually knows about PMR, and as you have found, not all rheumatologists do.

[Hidden]

Hi, my goodness, don't mess about with your eyes and go straight away to emergency. In regards to GCA I would go see a haematologist instead of rheumatologist, haematologists deal with vasculitis and the likes. Listen to your body and good luck in your journey🙂

[PMRpro Ambassador in reply to Hidden]

I'm sorry I have to correct that - haematologists do not deal with vasculitis, they deal with blood disorders. Vasculitis is a specialism of either rheumatologists or vascular specialists within medicine in most places. There are immunologists or vascular specialists in a very few very specialised centres.

[Hidden in reply to PMRpro]

Sorry my mistake