GCA helpful information (I hope).

[Suzita76]

17 months after I first had GCA symptoms , I thought it might be helpful to share/ summarise some useful information that I (and my GP!) have picked up in the meantime.

1 DIAGNOSIS: the recommendations are that if you have visual symptoms, you go straight on to 60 mg daily of steroids ( Prednisolone in my case) to immediately tackle the inflammation and save one’s sight.

I had no visual symptoms and the 60 mg I started on was far too high for me (I only weigh 50kg). Within 36 hours, I was having dreadful hallucinations, sobbing uncontrollably, no sleep, and trying to jump off a tall building- totally not me!

Steroids for GCA have been the mainstay of treatment since the 1950’s (- they are very inexpensive and because GCA is such a (relatively) rare condition, affecting mainly “elderly”, there has been little research money put into finding less-nasty alternatives.The NICE guidelines still say 60mg if vision seems affected but otherwise, “not less than 0.75mg per kg body weight “ , so in my case, 37.5mg daily. ALL drugs should be prescribed in accordance with patient’s body weight.

TEMPORAL ARTERY BIOPSY ?? ULTRASOUND??

I was told you should have a biopsy within 2 weeks of first going onto steroids, otherwise they reduce the inflammation and can mask the results. Also told that there was no possibility of getting one within 8 weeks ( and anyway, the biopsy is not without risk).

Next week, 17 months down the line, I am having an Ultra-sound scan of my temporal arteries. This is much less hazardous, less intrusive and is now superseding biopsy as a diagnostic tool. I count myself lucky that this is now available in my area of the U.K.

2. SIDE EFFECTS OF STEROIDs.

I was not warned that I could (and did!) develop Type 2 diabetes- apparently a known side effect of taking high doses of Prednisolone for a long time.

In addition, my face swelled up like a hamster, though as my daughter so kindly put it “You don’t need Botox now” and ( really devastating), my hair fell out (Google “telegenic effluvium”).

If you have Chemotherapy, you are well-prepared for this possibility but it has come as a complete shock to me- my once elbow-length, straight silky hair is now a few inches of curly fuzz- I just don’t look like me any more. In the grand scheme of things, this might seem trivial, but when it happens to you, I can assure you it is really devastating.

You must not eat liquorice whilst on steroids- both Prednisolone and liquorice increase blood pressure- one is bad enough!

Other medications.

We are told we need to take other meds. to counteract the steroid side effects, (but these may not be necessary- as someone who never took so much as an aspirin before last year, I always research and question the need for everything).

OMEPRAZOLE ( proton pump inhibitor to reduce stomach acid). Probably not necessary unless you suffer problems with stomach or oesophagus ( gullet).

(Plus you need to take it at least half an hour before you take the steroids).

Calcium/ Vitamin D supplement ( such as ADCAL); if you have bran or whole grain cereals for breakfast ( as I do), you should leave 2 hours before taking your ADCAL (likewise, for foods rich in oxalic acid (Spinach, rhubarb). ..... and why do they put sucrose in these tablets? Not good when the steroids have caused diabetes !

ALENDROIC ACID - make sure you get a bone density scan BEFORE starting this drug ( NICE guidelines!). I’m having my first ever scan tomorrow ( should have been 17 months ago!)- not everyone gets osteoporosis, and these bis-phosphonates are not nice, especially if you are taking them for a long time. I took them for a few months and they gave me terrible muscle cramps ( not listed on side-effects).

(Recommended reads :

“Bad Science” by Ben Goldacre

and “Bad Pharma” , also by Ben Goldacre).

[Mstiles]

Hi suzita,

Thank you for posting your hard-earned knowledge.

I was diagnosed in January this year with PMR/GCA, no visual symptoms, and put on 40mg. Prednisone, now down to 15.

The hair! I’m dealing with this too. I had long curly hair, now most is broken off and fallen out - I think I’m going to get it all cut off. Losing your hair seems to make the other things you have to deal with harder. (Cataracts, diabetes, etc etc). It seemed to get worse after 6-7 months on prednisone which coincided with a period of a lot of stress. Dermatologist recommended Rogaine but I’ve hesitated to start it.

When did you experience this? Is it getting any better?

Thanks for sharing

💕

[DorsetLady PMRGCAuk volunteer]

Hi,

A lot of the points you make are very valid, and you are obviously a well educated and knowledgeable person so I wonder why you didn’t read and fully understand the patient information leaflet that comes with all medication.

If you read the side effects of both Prednisolone and ADCAL you should have known that an increase in blood sugar levels were likely with Pred (doesn’t always turn into full blown Diabetes, and very often reduces to normal as you lower the steroids) - and that certain foods shouldn’t be taken within 2 hours of taking ADCAL.

Of course you may get side effects that are not listed, so that is why the Yellow Card system is there for you to report such occurrences.

[Suzita76 in reply to DorsetLady]

Believe me, I’ve read every word, but you might have noticed that if you switch drug manufacturer you are liable to get different patient info.- plus I noticed this when switching from 20mg to 10mg Omeprazole. Furthermore, I was reassured by my GP and Rheumatology consultant that I was a very unlikely candidate for diabetes (previously low blood sugar, bottom end of healthy weight, don’t eat white carbs or sweet foods, etc., but I guess being on a too-high dose of Pred. for so long has taken its toll ( and my blood sugar didn’t return to normal despite being below 3mg Pred. for 5 months. Hey ho.

[PMRpro Ambassador in reply to Suzita76]

Shows how much they understand of steroid induced diabetes doesn't it really? It doesn't obey the rules - the liver triggers the random release of sugar from the body stores, forming spikes that add to the normal average level as measured by the Hba1c.

[DorsetLady PMRGCAuk volunteer in reply to Suzita76]

The problem I guess is every one is slightly different, so we react different to the drug we’re on. I was on 80mg initially and it took me 4&half years to get to zero - so I took at lot of Pred -my sugars raised slightly as did my eye pressures but both reduced back to normal as I got to lower doses. The only problem I had was Pred induced cataracts.

I also took Omeprazole and Alendronic Acid for about 4 years with no apparent side effects - just lucky I suppose.

I also think the doctors don’t know, or don’t want to know the implications of the drug, so we need to find out for ourselves.

[scats]

Brilliant post very informative.

I too have only just had an agreement that I need a dexa scan, after nearly 3 yrs of pred. and regularly asking for one.

Would like to second your reading recommendations.

[piglette]

I understand you should not drink tea with your vit D and calcium according to my pharmacist, you should wait a couple of hours.

[Primarose]

You say: <Next week, 17 months down the line, I am having an Ultra-sound scan of my temporal arteries. This is much less hazardous, less intrusive and is now superseding biopsy as a diagnostic tool. I count myself lucky that this is now available in my area of the U.K.>/

Why are they doing this 17 months after having GCA?

[Suzita76 in reply to Primarose]

Hi Prmarose, long story but they are not sure I was diagnosed right in the first place and now want to make sure. In mid -September, my c-protein and ESR shot from very low to around 60 each, but with no symptoms. They upped my Pred. to 20 mg, “just in case” it was a relapse of GCA , but factors still high. Infection seems to be ruled out so they are doing the ultra sound to see what damage if any I have to my temporal arteries.

Depending on the results, I’ll either have a PET-CT scan ( to look for “ other” causes of inflammatory factors i.e. a tumour), or if they think it really has been GCA all along, they’ve agreed to put me on Tocilizumab ( now approved by NICE in the UK for GCA cases where Prednisolone has caused really bad side effects. I guess I’m lucky, though right now it doesn’t seem like it!

[Primarose in reply to Suzita76]

How incredibly confusing and frustrating for you. I hope that they can you you some positive answers after you've had the tests. You deserve that at least.

[PMRpro Ambassador in reply to Suzita76]

A PET-CT would show up PMR and GCA inflammation - it would be the ideal for most of us if it were easily available. But even 10mg pred suppresses the fluorescence in GCA - wonder if it does with other things?

It is also recommended by experts that a rise in CRP/ESR that is not accompanied by symptoms should not result in a kneejerk response increase in pred dose.

[Suzita76 in reply to PMRpro]

Precisely! I did say this to my “specialists”, but felt obliged to follow their advice “ just in case” my GCA was relapsing ( if in fact I have GCA!).

It’s all so very frustrating- if money ( and availability) were no object, we would all get the right tests and scans straight away, but it’s like walking through treacle.

The worst thing from my point of view is there does not seem to be any joined up approach between GP and various specialists. I had an “urgent” blood test at the hospital more than a week ago and still don’t have the results ( I normally get the results same day or within 24 hours from my GP), and phoning them just gets a recorded message. My GP feels we need the results to know if I can safely reduce the steroids or not. Hey ho.

[SheffieldJane]

Thank you for taking the time to summarise this for us. I am sorry your early overdosing was such a nightmare. I know that people have reported little or no eye symptoms and have still lost vision. I think we still have to be ultra careful. Thanks for posting Suzita.

[Hellyowl]

Hi,

I know we are all different but I thought the Pred was causing my hair loss and just put up with it. I decided to stop my Alendronic Acid 3 months ago because I have never had a bone scan, told it is not necessary, and I have been taking it 2.5 years. After 8 weeks my hair had come back thick and strong, it doesn't seem to want to stop growing now. Also I had been told I had arthritis in my hands, since stopping the Alendronic acid I can get my rings on and unscrew the tightest jar. I haven't told my doctors yet!!!! Simply because I haven't had reason to see them. But I am expecting to get into trouble.

[Suzita76 in reply to Hellyowl]

Hi Hellyowl,

My GP said people should be taking Alendroic acid if they are taking Pred. above 5mg. I stopped taking Alendroic acid in May ( like you, thinking it could be causing my hair loss), but the hair is still falling out- hardly anything left now, so in my case, I think it’s the steroids. Not going to start back on Alendroic acid again,though, until I get the results of the bone scan I’m having this afternoon. It certainly made me feel dreadful ( I’m normally a very fit person, running, fell walking etc but the Alendroic acid made me need to sit down with muscle spasms just walking to the local shops! - I’m nearly 70).

We are all very different, and need to keep a careful diary of everything (symptoms, medications, etc) to try to make some sense of our conditions.

Do tell your GP about how what you’ve learned about Alendroic acid! Very valid, and if we don’t tell them, nothing will change. Best wishes

[stellafmdm in reply to Suzita76]

I was put on AAcid automatically at first diagnosis of PMR, but it made me ache all over worse than the PMR, I haven't touched it since and the medics have listed me as allergic to it!

[Suzita76 in reply to stellafmdm]

Similar to my experience- I won’t be taking it again (my bones are fine apparently!).

[Hellyowl]

Hi, I am so sorry about your hair loss, I am down to 5mg, though I feel terrible in the mornings, but unless I have a flare I am persevering. Doctors should be more concerned with our lifestyles, I have never been asked if I work or if anything I love doing has been lost. I have had to keep impressing on them I am self employed, although I am currently not working because I am trying to finish my doctoral thesis. I told the doctors I have invested four years of my life into my doctorate and a spent a lot of my money on it and need to keep well enough to finish. Only one doctor showed any concern and he was doing his doctorate to!

It is well and good keeping us going but there is more to life than that. We are creative active people with interests.

[Suzita76 in reply to Hellyowl]

You are absolutely right. It’s more and more difficult to have a life that is actually worth living when we have to spend so much time being tested, queuing at GPs and hospital, trying to get prescriptions etc. It’s too easy for the consequences of these conditions to take over completely.

It’s so good to have this forum to discuss the issues but more important to vent our frustration and anger- I for one certainly feel better just writing things down, (even if no one listens ,but I know you all do!). Thank you for just being there!

[FRnina]

Thanks for the overview. It's always helpful even though we are all different with varying experiences. My journey is also at 17 months (GCA&PMR) and I'm now down to 6.5mg Prednisone. Everything going ok but I hope I haven't spoken too soon. Taking the super slow taper as advised on this forum. Ever thankful to all contributors.