Query GCA & Myalgia caused by steroids.

Bones, joints and muscles
1

Hi all. I need some advice please.

I have had a few scary days. I developed all the symptoms of GCA despite being on 14mg of pred.

(been on pred since last Oct)

I had headache, tender scalp. Pain in my left eye and check bone. Pain behind my ear and a funny feeling in my tongue. Lastly I got a generalised swelling over my left temple. Although I had all the symptoms none were that severe.

Yes I was in discomfort but not in agony and I had no sight problems.

I spoke to a GP who wasn't sure what to suggest. He asked if he could ring me back after he had spoken to the other doctors in my practice.

He called me back the day after to say they thought it best I went up to 40mg of pred as GCA was suspected. The doctor also tried to contact my rhumy nurse specialist (Erica) but couldn't speak to her.

Today Erica phoned me today to say she doesn't think it is GCA. (I have spare blood forms here so took it upon myself to get my bloods done as the doctor didn't suggest it) Erica had my bloods back and said my levels had improved since last time and my crp was at 9 now and my esr at 24.

Much better than before.

We discussed the fact that I had taken 40mg for 1 day before test but she still feels the levels would not go that low in just 1 day.

So question 1 do you think I should stay on 40mg. And decrease slowly if I don't need to be on this high dose or could I just drop back to 14mg.

I know we are supposed to go slow but I have only been on 40 for 2 days.

I have very bad cushings symptoms and I fear what this high dose will do with that...

Question 2. I have been getting pain in my upper arms and legs getting worse as time goes by.

Erica believes it's steroid induced myalgia.

She said my cushings shows I do not tolerate pred well. Has anyone else been told this?

Sorry for the essay but need advise please.

2

14mg isn't enough to stop a progression to GCA if it is going to happen. Your GP should really have written a letter and sent you to the hospital for assessment by a rheumatologist (it really isn't rocket science).

Developing "Cushing's syndrome" is pretty much inevitable if you are on high doses of pred - the symptoms are caused by the excess corticosteroid. I suppose you could say that the cushingoid symptoms show you "don't tolerate pred well" - but I had all of them but never had steroid induced myalgia. My daughter does. Where's the difference between showing some side effects and not others?

If you have only been on 40mg for a few days it is fine to drop right back down to where you were. The going slowly has a few reasons behind it: the change in dose is easier to deal with after you have been at a given dose for several weeks and it is easier to identify the right dose. Finally you need to go slowly below 8mg to be sure your adrenal glands are starting to work again and to reduce the risk of an adrenal crisis. You're nowhere near that yet.

Last point - it is possible that the onset of arm/leg pain is due to GCA developing in your thorax/abdomen - and finally you developed cranial (head) symptoms. Did the symptoms go with 40mg? Try reducing - and do they come back? Then discuss it with the rheumy - not third party via a nurse who, while she may be very good at practical living with pred and arthritis, doesn't have the background she needs to distinguish GCA from PMR or pred problems. The only way to know where there is inflammation is using the correct imaging (usually PET-CT or PET-MRI) which will show up all the areas there is inflammation. That may be the only way you can find out for sure.

3

The head symptoms have gone now I am on 40mg. The only other thing that was very strange was I had severe pain in the bottom of my left shoulder blade and I have been getting nauseous and having pain where your gall bladder would be upon eating(i had my gall bladder out 3yrs ago)

Those have both gone now too.

I didn't think they were conected. In fact I did think they may be side effects from the Aza I am taking.

I have lost 4lb without trying this week. But I was happy about that. I put it down to not being so hungry because of the nausea. Wondering now if it was to do with gca?

Erica is a rheumatologist specialist nurse. She is my go to if I have problems in between consultant appt. She gave me my 1st lot of pred. Does all my blood tests and deals with my Aza.

She has held the job for 25years and seems well informed. I mentioned to her about this group and the dead slow method. She said this group was the best and she totally agreed on the go slow method.

She has contacted me again since I posted to say she has emailed my consultant for his opinion. She knows I am desperate to be off pred or at a lower dose but said I should stay in 40 until we hear back from Prof Bowman. She said if we don't hear tomorrow we will start reducing and see what happens.

The only thing that really worried me into believing it could be GCA was the temple swelling. I just don't know what to think???

Thank you for answering. I was hoping you would be around xx

4

That shoulder blade pain and "gall-bladder" feeling (for want of a better word) possibly could be connected and if they are inflammation the high pred would probably help. You can still get choledocholithiasis even when you have had your gallbladder removed - bileduct stones. So do ask  your doctor about it.

I'm not looking down on your rheumy nurse at all, some of my best friends are specialist nurses - but there are a lot of rheumies who haven't had a lot of experience of diagnosing GCA, never mind their nurses.

5

Thanks for that. I hope it's nothing else lol. Too much to deal with...

I didn't think you were putting the nurse down at all. I do sometimes think they have a better idea on things. They seem to take more time to listen to the patient. I feel more relaxed talking to Erica. She seems normal lol not above herself if you know what I mean.

I sometimes find consultants a bit closed minded. Its their way or the highway.

Thanks again for your responses. I do appreciate your time. X

6

Hi Eileen just a quick update for you.

I was called in today to see Professor Bowman at the QE Birmingham.

He basically said as I am still only 45 it's unlikely to be GCA or even PMR. At 1st I thought here we go again.

I asked him if not these problems then what. He basically said all guidelines say I have to be over 50. So he won't say I have any named condition but he did say that I tick every box to say it is PMR. He just won't say t is????

Why there are no straight answers I just don't know.

He said he was concerned that I could be among the handful of people who do not for into the "normal" pattern of things.

(we spoke about the yng man who was diagnosed at post mortem) he said he did understand why I was concerned.

He agreed that I had a good understanding of my body as I tell them before the blood results are read out if they are high or low depending on my current pain and stiffness. I have always been spot on.... Until this time??

I felt so rough I was convinced my levels were up. Strangly they were quite low??

I had taken 40mg of pred before blood test but only 6 hours before... ?

could that dose work that fast?

Anyway long story short prof wants me to drop pred tomorrow to 30mg. The 3 days later to 20 then a week later to 15.

He is interested to see if symptoms come back for GCA.

He has refered me to an eye specialist to see if there are any optical signs of giant cells?

He has also ordered a full abdo and pelvic scan to rule out anything else? These tests should be done within a week. He feels the biopsy won't show anything because of the high pred I have been taking but he said the eyes can show things for up to 2 wks after. Have you heard that before?

I am very interested in your thoughts on all this. I have most likely missed a few points but yr probably bored by now lol.

Hope to speak soon. Jen xx

7

Never bored by this sort of discussion Jen - just a bit frustrated at the lack of understanding of statistics and what guidelines mean! We've (as patients) struggled to get 50 as the lower age limit instead of 55 and we would like to see it lower. There is a camp of older experts in the field who insist it doesn't happen. If you dont think it exists, you won't look for it and you won't recognise it when it is there. The younger up-coming experts in the field agree with us that it does and they are willing to consider it as a diagnosis. I'm also a bit concerned at his views on what the eyes or a TAB show - but who am I to disagree with a prof of rheumatology! However - at least he does accept that there are outliers and that is really what we as a patients group want them to acknowledge: that, while PMR/GCA are unusual in under 50s, they can and do happen and should not be ruled out. There are enough reports in the literature as well.

The biopsy almost certainly won't show anything. But then, it only is positive in less than half of cases anyway. It won't necessarily show giant cells if the GCA is affecting arteries elsewhere - which is very possible, especially the chest. It isn't the temporal artery being affected that affects the eyes, it is an artery that supplies the optic nerve that is important there, if it isn't involved then the optic nerve will remain fine. The AION he is talking about (I assume,  anterior ischemic optic neuropathy) changes the appearance of the optic nerve where it joins the retina - but as I understand it if the event is short it won't, it is a chronic condition, but I may be wrong. And no eye specialist will "see potical signs of giant cells" - they may see the AION but that can be due to other things as well.

I don't know exactly - but 6 hours of 40mg pred is enough to clobber PMR symptoms good and proper. Whether it is also enough to reduce the ESR/CRP that quickly I don't know but it also depends on the amount you had taken in the days before. 

Do you know what sort of scan it is? That is significant too.

And I hope the drop in pred dose goes well - if you haven't been on that high a dose for more than a few days it should go OK but you may feel quite rough in the meantime. I'm looking forward to hearing how you get on. Good luck.

 

8

Thanks Eileen. Very informative as usual.

The scans are just regular ultra sound.

He said he could do pet or ct but worried about the amount of radiation when it wasn't drastic to know the results. He said ultra sound would do for now?? I asked what it was he would be looking for, he sort of shrugged slightly and said it's more a case of ruling things out. He said something is causing the high crp and esr and this was just another way of seeing if it could be something else???

As you say he is the prof lol...

9

Oh well - I could probably write for half an hour on that...

With that level of fear of radiation it's just as well he doesn't work in the USA!

10

I bet it's more to do with cost than radiation!

Jen x

11

You're catching my cynicism...

It is a problem - but not for a single one done to find a pretty quick answer. You don't live in Aberdeen either - the background radiation there (like some other places) makes a scan or two look quite reasonable.

And as a comparison:  on a scale, 1 whole body CT scan  is about 10 as opposed to the 100 that is the recommended maximum exposure for radiation workers every 5 years. That is a figure well within safe limits and can be repeated every 5 years. 

12

Hi Eileen. Anothe quick update.

Today was day 3 of 30mg pred. Due to reduce tomorrow to 20mg for 7 days.

I have been fantastic on 40 an then on 30 with loads of energy. I have a lovely clean house!.

Today though I have had 2 naps and feel generally tired (I guess I abused the good feeling the steroids gave) my only concern is that I have pain in my left eye and cheek bone again and now I have woken with a headache.

I will watch it closely and if other symptoms come back to join it I will go back to Prof Bowman for help.

I sort of think the 20mg maybe to soon so may decide to drop to 25mg instead.

BUTTT

I also think if I feel like this at 30mg I should do the recommended drop... If this is GCA the only way to prove it is for the prof to see it?????.

one last thing when eating lunch my jaw was uncomfortable. Not painful like last week but getting their.

I will keep you updated. Fingers crossed it's just rapid drops on pred and me over doing things xxxc

13

You're feeling good because of the pred - if you already have returning niggles of pain now my feeling would be to give it a bit longer at 30mg if you can and definitely to contact Bowman if it gets any worse at 30mg. Watch that jaw discomfort - no burying your head in the sand!

And do please rest a bit - though I do understand the desire to get things done while you feel able to!