GCA Sufferers Please be BMA (Be More Aware - than me!)

[Stkeyna]

I have been a GCA sufferer for over ten years (6 months of Polymyalgia). And I have made mistakes - and sometimes - I just haven't been told or been made aware of important factors.

Hands up for the following:

1 Did you know that you are safe if you chose to sit tight on your level of prednisolone proving you are at 10 mgs or above? I repeatedly, for years, was told if you are not well then go back to the level you were on or add 5 mgs. The problem for me was that my GCA symptoms mirrored that of prednisolone i.e dizziness, headaches and feel unwell. So I was recently informed by a highly regarded rheumatologist that I could just sit still at 12.5 mgs for a week or so and see what happened. He assured me that I could not do myself any harm by trying this which was a complete surprise to me. So I did and with success. I had four days of the above symptoms and then all settled down. I am now down to 10 mgs. So I feel that on many an occasion I have taken prednisolone unnecessarily and my symptoms were in fact due to the prednisolone itself. So in my limited opinion, in certain circumstances, it is very easy to get confused between GCA symptoms and those of too much prednisolone, or indeed, withdrawal symptoms.

2. Alendronic acid - you need to come off it after 5 years and have a break from it. No one told me this until I had done 7 years! Obviously, do follow instructions of sitting up after taking the tablet and to drink plenty of water. With the latter, I didn't drink enough and I ended up with esophagitis! I am aware that some of the site are not keen on taking the tablet and prefer vitamin d and calcium. Please note if taking the latter, in tablet form i.e. Adcal this possibly can lead to kidney stones. This did happen to me.

3. If having a scan - a PET scan - when checking for levels of inflammation then DO NOT come off your drugs prior to the scan. I was told by one rheumatologist that I needed to come off my drugs so the degree of inflammation could be properly seen. However my highly regarded rheumy stated that you do NOT come off the drugs as it could release the 'dragon' and then it could be very difficult to get back to the level you were at before coming off the drug. Again this happened to me. I was at 7 mgs of pred. and have been on 10-20 mgs for the last two years since the scan and have really struggled to get back down.

Please note that the above is only my personal experience and opinions. I appreciate that we are all different and hold different experiences and views. Anyway I just wanted to pass on the above points in the hope that it might help fellow suffers in some way! You can take your hands down now if many were raised!!

[DorsetLady PMRGCAuk volunteer]

Hi,

Partly raised hands!

1. Never had a flare, but did have Preds increased by GP because inflammation markers high ( in hindsight know this was stress as no return of symptoms). Was down to about 12mg and increased to 35mg - but quickly reduced.

2. Did know about AA - came off at 4 years. Does say no more than 5 on the patient leaflet.

3. Did have an MRI scan six months into treatment - but no other investigation - not told to stop medication.

[Stkeyna in reply to DorsetLady]

Hi, Thanks for the response and yes I don't always read all the info I get so hands up from me to that on AA tablets! One other point I didn't list was that my rheumy has stated that in his opinion -no one ever needed to go over 20mgs. This is backed with years of his years' experience and his predecessor's - who I think had carried out a small trial. He felt other consultants perhaps over exaggerated the the levels of predisolone required in early stages of GCA because it delt with possible loss of eyesight and no one wanted to get it wrong! That one was quite a shock to me!!!

Merry best,

Ian

[DorsetLady PMRGCAuk volunteer in reply to Stkeyna]

As someone who had already lost sight in one eye - was told needed high dose (80mg) to save the other.

Not sure what would have happened on 20mg - but I guess even your Rheumy wouldn’t have risked it!

[Stkeyna in reply to DorsetLady]

So sorry to hear about your eye that must have been tough. Not sure what he would have done but guess as you say he would not have risked it! However it has certainly changed my own view on always needing more pred. to improve a situation.

Hope your bathing in sunshine as I am... it might last all of ten minutes!!

[SnazzyD in reply to Stkeyna]

Hmm, well it is quite possible but for me I think I needed every bit of my 40mg. Doing down as suggested (10mg) caused the symptoms to reappear so I did my own very much slower plan. Large studies are needed but ethically it’s a bit tricky isn’t it?

[Stkeyna in reply to SnazzyD]

It certainly is and as I say everyone is different. Good luck! Ian

[JGBH in reply to DorsetLady]

Hi, Can you tell me, was the MRI scan (some have PET scans) to check for problems arising from PMR, and what can these be, or have I missed something?

Apologies for hijacking Stkeyna's post.

[DorsetLady PMRGCAuk volunteer in reply to JGBH]

No for shoulder pains. Unfortunately I had been treated pre diagnosis for a frozen shoulder - which it wasn’t! But I had severe arthritis in left shoulder which MRI confirmed - still have!

[JGBH in reply to DorsetLady]

Hi and thank you for your prompt and helpfull reply. Having a bad day again and the brain is not working too well.

Sorry about all the problems you have had/have. Misdiagoses happen too often unfortunately, and we pay the price.

Best wishes.

[Blearyeyed]

Thanks for adding you patient experience of GCA , it did include a number of common mistakes People make .

Most interesting is the info on taking medications while having scans or tests.

Specialists really getting to grips with which way is right would help us all.

Don't know wether it's different departments or hospitals working from old rules or new ones.

I have had two tests when I was told I had to taper medication and not take it before doing it.

When having other tests , told the opposite.

Of course it may have something to do with what particular symptom they are measuring , but if not , and it is just out of date guidelines, they are putting patients under an unbelievable amount of physical stress and pain to get what they want.

From experience , I know trying to get over those sorts of flares after tests are the worst of all. Having to climb the whole ladder again after a quick , bumpy ride down the snake.

[Stkeyna in reply to Blearyeyed]

Thanks for the response. Yes you think it would be a clear cut rule about not coming off pred. but apparently no. Anyway trying my best to spread the news.

Merry best, Ian

[PMRpro Ambassador in reply to Stkeyna]

There cannot be a clear cut rule - it depends on the type of test. In the case of a PET scan or whatever sort, any dose of 10mg or more of pred makes it pointless as the pred interferes too much with the mechanism of the test. When patients mention on the forum that their doctor is telling them to reduce pred to have a PET scan I do almost always warn them of the potential risks that it may be difficult to get a flare under control again and suggest they have a detailed discussion with their doctor.

But what do we know? We are just patients and - god forbid - a forum on the internet for people to whinge on. I quote ...

[Blearyeyed in reply to PMRpro]

Yes the PET scan , understandable and you have probably prepared more people on this forum about the pre and post test horrors of that far more than their Doctors have.

The confusion around other tests is what I have found frustrating , the MRI , MRA , Ultrasounds etc. etc.

I went for an MRI at the beginning of the year , after going through the tortures I informed them I did as I was told only to be told by the Senior Technician when I arrived that I hadn't had to bother with the test I was having done . That's when it gets annoying .

Silver lining is it taught me a new lesson , check the facts on what is actually necessary to do or reduce with some research and the Senior Techs themselves.

They seem to be more clued up than the Consultants who with some tests still seem to be working from old news.

Don't even get me started on blood test fasting and Diabetes , last time, I did suggest that if they wanted my OH to do what they were requesting they needed to come out to the house to do the sample while he was still in his bed.

[PMRpro Ambassador in reply to Blearyeyed]

Our phlebotomy clinic does have a sign saying that fundamentally all tests should be done fasting. But there really are very few where it makes the slightest difference.

But the department that does any fancy test is the place to ask for information about it - not least because of the cost involved if it is done with the wrong prerequisites or because for one with a long wait, why waste a space.

I gave up expecting most doctors to have a clue years ago!

[Stkeyna in reply to PMRpro]

Thanks for the replies. Dare I say are we expecting too much from doctors and we just have to be more clued up ourselves! Then again a specialist should have specialized knowledge!!

[PMRpro Ambassador in reply to Stkeyna]

They do within their own field mostly - but the finer points of actually doing the imaging are a different matter.

[Thelmarina in reply to Blearyeyed]

Really like the comparison with snakes and ladders! Perfect! 😀😀

[SheffieldJane]

Thank you for your tips. I did know about AA which I have been deftly avoiding for 3 years. The fearfulness of staying on a high dose for years because of the perceived danger to your eyesight struck a chord with me. I am certain that you are not alone there. I was not clear that a PET scan was valuable if you were medicated either. Your thoughts are valuable and will provoke thought and questions. Good luck!

[Stkeyna in reply to SheffieldJane]

Thanks! If it helps or makes someone think twice or thrice then all well and good. Very best, Ian