GCA, tapering and blood tests.: I see Ann 1 asked a... - PMRGCAuk

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GCA, tapering and blood tests.

Pippah45
Pippah45

I see Ann 1 asked a similar question and I am wondering about further tapering. I went down from 50 for three weeks or so to 45 last week (Rheumy had said to 40 but still had issues in temple area). Then 40 on Thursday. 35 this Thursday for 2 weeks. I am then supposed to do blood tests and consult again. My question is do blood tests override symptoms? I am asking partly because I am touring the Highlands and Islands with caravan and dogs and don't particularly want to rush home for a blood test. Getting away seemed important if you know what I mean?

I was splitting the dose too but found I need a bigger hit in the morning. I am being very careful and doing far less than I have done in the past, lots of resting up etc. and enjoying the beauty. But I do feel that symptoms are there. Not that I want to be on pred any longer than necessary of course. I never imagined I would need the stuff. I don't suppose there is an average need for prednisolone on the GCA journey? Thank you.

20 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi -

couple of points - (my view only) -

Rheumy is try to reduce you too quickly - you need at least 3 weeks at each dose to be sure it is controlling symptoms before you drop to a lower dose.

Blood tests do NOT override symptoms - it’s always symptoms first and foremost!

In GCA it is better to take as one dose - especially initially (there is some discussion about this - but I personally would always go with one dose!)

Nobody wants to be on Pred for longer than necessary - I can assure you of that - but you need what you need! No ifs and buts!

Not quite sure what you mean “an average need for Pred for GCA journey” - do you mean an average dose?

If so, no! Depends on individual circumstances.

Just for info -

Me - 4.5 years starting at 80mg pd - overall dose - just under 20g - that works out at average of 12mg per day.

Pippah45
Pippah45 in reply to DorsetLady

Thank you SO much for that answer! I am a bit of a rebel but you have confirmed my feelings about the tapering! I have rebelled with my thyroid treatment but GCA is a new ballgame altogether.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Pippah45

You can’t rebel too much with GCA - but listen to your body. If you have symptoms - don’t reduce!

That may be rebelling against the Rheumy - but sometimes you have too.

Enjoy your trip!

PMRpro
PMRproAmbassador

Symptoms (or their return) should always trump blood tests. A single raised blood marker shouldn't result in a kneejerk raising of the dose UNLESS accompanied by symptoms. If there are no symptoms it is recommended the test be repeated to establish if there is a trend. But that is VERY speedy tapering. Yes, I know you want off pred asap but you need to stay at any new dose for a couple of weeks to be sure it is still enough.

No - no averages. I know a few people off pred in 2 years and a lot more who were in the 4 or 5 year range. Splitting dose in GCA is generally not recommended but if it works better for you to prevent a surge of symptoms later in the day who is going to criticise.

If you were to have a return of symptoms then I'm sure any A&E (yes, I know they are few and far between in the HIghlands!) or GP would do an ESR/CRP for you if you explained. You would have to stay in the same place a day or so to get the result though.

Hope the weather is kind by Scottish standards!

My 2 cents - Having lost sight in one eye while having "normal range" blood test results, tells me that symptoms ALWAYS trump blood test results. That's how my docs treat me; symptoms only. Blood tests are done, but so far results haven't changed, which is a good thing. I also think you're tapering too fast, but understand. I was following rheumy's orders and it didn't end well...ever. I have no problem with taking pred for however long it takes to protect and save my good eye. Priority #1 for everybody is saving eyesight. Off of pred, but blind? Who wants THAT?

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Dreamer43

My view (mono) exactly!

You people really are the best! Thank you so much. I will definitely stop splitting and go slowly. I seem to need a big morning dose as that is the trouble zone. No symptoms later in the day. Yes I have marked the Hospitals, pharmacies and med centres! I asked for enough pred to last from my GP and they got it wrong! Really nice pharmacist on Islay has promised he or the doctors will help. And the one on Arran did help! So I won't run out! Thank you.

Blearyeyed
Blearyeyed in reply to Pippah45

Great !

You may find with the extra activity and travel that your symptoms are more noticeable and you feel more tired than you did before anyway.

As you are so busy , we often recommend suspending the " timetable" of tapering on a big trip or holiday anyway , and staying on a dose that you are functioning comfortably at until a few days after your return to avoid the extra activity bringing on a flare . We are rebels like that !!😋

If the pharmacists are helping then it's all good.

Getting that break and time to relax and get used to the ' New Normal ' is probably going to do you more good at the moment than a blood test in line with the Doctors schedule.

You can go and have it done as soon as you go home and make appointments about the results then if you are not suffering any adverse effects or new symptoms at the moment. It's better to get some positive self care and enjoyment before the next medical assault anyway , just don't leave it too long after you return.

Keep pacing yourself , and at least you are starting as you mean to go on , proving to your Doctor's that dealing with your medical condition has to be a partnership , and both their views and your need equal status in your treatment.

Keep up the good work , you little rebel , you, xx😋😂😂😂😘

Pippah45
Pippah45 in reply to Blearyeyed

Thanks Blearyeyed! I have noticed the change overdoing things can make! With having hashimotos for a while not over doing things has become a habit really. Not doing anything though gets quite depressing so a happy medium is called for. In days gone by I would have stopped for one night on my travels now I rest up longer between. :). I had no bookings to stick to either which helped. At 74 I can't expect to manage a caravan forever although technology keeps bringing out more gadgets to help!

Learning to actually "live" within limits has to be key to dealing with things plus listening to our bodies I think! I have a great visual of all the rebels out there! Can't find the emotes though!

I so agree about taking part in my care. I didn't get on with Levothyroxine so am already off piste there and trying to explain that the man who wrote current guidelines now says those are wrong is quite a task! Change is coming but so slowly! They Witter on about osteoporosis but there is no actual proof that it happens with thyroid trouble than old age although I know it's a special danger with prednisolone and working on that. My surgery has walk in bloods every morning which makes for easy testing and I will do on return.

Thank you again.

PMRpro
PMRproAmbassador in reply to Pippah45

Pred isn't actually really any worse than thyroid medication!!!! It is said 40% of pred patients become osteoporitic, 50% of the US population become osteoporitic at some time!

Pippah45
Pippah45 in reply to PMRpro

I think there is a difference here unless I have got it wrong. Pred I believe is "known" to contribute to osteoporosis whereas with Thyroid meds there seems to be zero evidence. Ditto it's part in atrial fib as undertreated thyroid is

more likely to lead to AF.

PMRpro
PMRproAmbassador in reply to Pippah45

I suspect the "known" is a pretty dodgy bit of info - I prefer "claimed"! Particularly since Matteson and co found no increased rate in PMR patients on pred compared to an age matched population not on pred. Pred may cause palpitaions that are then blamed on a/f - but PMR does it too. Mine started with PMR not with pred.

Pippah45
Pippah45 in reply to Pippah45

Well thanks to you lovely people I continued to rebel and stay away in the Highlands for a really memorable holiday! I managed to stay much dryer than most people it seems by following the weather forecast and keeping far north and then east. Fabulous. Only real stress was keeping up with a supply of Prednisolone. Most pharmacies were helpful although one female pharmacist gave me a very hard time! Now to face the Rheumy! I am now down to 25 mg - but only just. If I do too much my right eye feels weird - not sure how to describe it but smoothing out the skin on my temple and all round the eye makes a difference - and making sure specs are clean and no sleepy dust of course. I tried to go down to 25 last week but eye complained as I had a long drive so I went back to 30. Some years ago I had Shingles very close to that eye so there is scar tissue there. The other thing that troubled me up until about last week was my jaw - drinking a glass of water it would rattle as in a sort of tremor? My tongue also felt as though it had done a marathon of picking food out of my teeth? Strained muscle sort of thing. I haven't seen either of these two things as symptoms of GCA? Perhaps the jaw tremor is part of it as opening wide is not exactly comfortable.

So blood test done and CRP is at 6.8 where it should be less than 5 which is where it was for quite a long time - at least a year - before PMR/GCA was suspected.

ESR is now 2 when the range is 9 - 20 so I perhaps I will be informed that I don't have either PMR or GCA?! I am beginning to wonder about spending money on this Rheumy - and perhaps hope to be sent back to GP?

The XRay of my hips finally got back to the GP and he said marked decline and did I want to be referred to a surgeon. I am sometimes uncomfortable but of course the pred has helped here - I would say I was quite a few years from needing surgery so I am settling for a referral for physio which is a bit reluctant as I have never found it much use!

Any comments would be much appreciated.

PMRpro
PMRproAmbassador in reply to Pippah45

You can have tongue claudication if blood flow is impaired but there are other causes.

I suspect the x-ray is showing you may be closer to the surgery than you think. Given the time it takes to get on the lists don't you think that at least being in the system with a realistic assessment of the state of your hips would be a good idea? You can defer the op if you really don't want it but it is far better to have it done while you are fit than to refuse to even contemplate it and suddenly be faced with emergency need and be trapped at home until it can be done.

Pippah45
Pippah45 in reply to PMRpro

Ooh thank you for that - getting on a list sounds a great idea I hadn't thought of it that way!

PMRpro
PMRproAmbassador

Depends - I don't have many and when they are it is usually for other reasons. My ESR/CRP don't do much at all and I have to pay for them! Why waste money?

Ideally, before each reduction step I suppose. If you are reducing steadily that will mean monthly or 2 monthly which seems often given the problems of getting a GP appointment! Any sign of them starting to wriggle upwards is a warning sign that you are skating on thin ice. That may happen before symptoms appear - but I suspect watching for how you feel in the morning changing at all might do the same. Everyone is different so knowing your own pattern is important.

PMRpro
PMRproAmbassador

In a way yes - a single raised blood test without symptoms doesn't mean increase the dose. It means get it checked in a week or two to see if there is a trend upwards. All sorts of things will raise the ESR/CRP, not just PMR. It is useful to get a match of your bloods and how you feel so if it is easy, go for it. For lots of people in the UK it is an absolute pain persuading the GP to spend money never mind get a phlebotomy appointment!

I have never felt so bad in my life, my GCA very bad! but I keep going, no choice!. My fear is tapering off my steriods ! This is my body and I don’t want anyone to tell me howbI gave to live !. My pain every day is chronic. It’s so bad , I have looked into,going tomSwitzerland to end all my pain, that’s how bad I feel.

PMRpro
PMRproAmbassador in reply to Meg1933

Then you need to find a doctor who treats the patient not the image they have of the patient.

You need professional help if you are as upset as that. Please do seek someone to at least talk to as soon as you can - and much better medical care. But you must tell them how you feel.

Hidden
Hidden in reply to Meg1933

I am so sorry you feel so bad. You need to seek help for how you are feeling and you need to find a Dr you trust. When you are in pain and feeling so bad it's hard to reach out, you have reached out to us so that's a good step. Please ring the drs surgery tomorrow and ask to see the Dr. Tell them it's an emergency and how you feel. In bad times I have walked into the surgery and told them I was in pain and depressed and had thoughts that weren't good for me and the Dr saw me after a few mins. The stress and anxiety you have about tapering won't do you good, but you have to take the step to feel better emotionally. Please keep in touch and let us know how you get on.🌻

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