I feel like a yoyo, Do I have GCA or not? - PMRGCAuk

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I feel like a yoyo, Do I have GCA or not?

MJenkins
MJenkins

I read with interest a lot of the posts but I still don't know if I have GCA or not. My 1st visit to GP, end of Sep 2016 - she suspected GCA and started me on 40mg preds then up to 50mg after 4 days. My blood tests have all been 'normal'. My visit to rheumy was at about 5 weeks and he didn't think it was GCA. but a sinus infection!! Biopsy was negative at 7 weeks.

Decreasing of preds started - 5mg per week down to 20mg, 2.5mg per week down to 10mg and then 1mg per month.

All went well and I'm thinking it's not GCA, until I was down to 7mg and planning an overseas holiday, saw the rheumy and agreed to stay on the 7mg for 2 months to cover the trip.

The day before we were to fly out I woke with the return of face pain, the sensitive creepy crawly feeling on the scalp around to behind the right ear, an ache across the bridge of the nose and also in the upper jaw/gum.

Rang the rheumy but he was not available, went to GP and she gave me a script for 25mg preds again and sent me for another blood test. Said for me to ring her the next day and she would advise if I was to go up to the higher dosage. I tried twice but didn't get onto her. So when I got to England 23hr later I still had the same pain, no better or no worse.

I decided in the absence of Dr advise I would go up to 25mg for a week, that worked, took all the pain etc away and I was fine for the whole trip, had reduced down to 10mg by the time I was heading back home. On the plane I realised the same pains and feelings were back again. In Sydney for a couple of days before the 7hr drive home in the country, I went back up to 25mg, 1.5hrs later pain free.

By the time I had reduced down to 15mg again I had a few nigglely feelings, not really pain, so when it came time to reduce to 12.5mg I did thinking "its not supposed to be GCA" by that afternoon I had the burning pain in the temple area, worse than ever, after a very poor night I took 25mg again and went to see the GP, I said to her "I think you were right the first time" her reply was "but the rheumy doesn't think it is". She told me to stay on 25mg until I had my next rheumy appointment in 2 weeks.

When I saw him he offered another biopsy to help rule it out. I said no. As I was still having aches and facial feelings as before when I saw him he said as a test go up to 40mg for a week then back down to 35. As it turned out I was coming down with a head cold which then went to the chest. At present I'm on 35mg and have slight pain so don't want to reduce to 30.

I have now been wondering am I doing too much. My reasoning has been 'if I don't have GCA I don't have to pace myself' and have been carrying on as before. Is it because of the preds that one needs to pace themselves or because of the underlying disease?

I work full time, we have been setting up a new office, moving furniture etc as well as having my elderly parents living at home with me.

Any insight would be most appreciated and sorry for the long saga but I felt it best to explain it all.

Thank you

Merryl

17 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi Merryl,

Oh dear what a rollercoaster for you.

Short answer to -"am I doing too much" YES! Do you have GCA - most probably.

The fact that your blood tests are normal is not in itself unusual- many people never have raised markers. As for having a negative biopsy after 5 weeks, doesn't mean you don't have GCA - all it means is that the sample they took didn't show it. Maybe because that part of the artery was clear anyway, but more likely the Pred was working and had reduced the previously inflamed cells.

As for your current situation, yes good idea to wait until your cold/chest has cleared before you even consider reducing. You need to stay at each dose for at least a fortnight to know whether it's working, and because of your yo-yoing previously it's difficult for you to know what your optimum dose of Pred is. It's difficult enough to reduce at the best of times, without all that you've been through recently.

Just because you're on Pred it doesn't mean the GCA is cured, it's not. All the Pred does is control the inflammation caused by the underlying illness. Unfortunately, both Pred and the underGCA can cause fatigue, so that's why we're always wittering on about - pacing, pacing, pacing! Difficult when you're working, but you do have to find a way to do it, otherwise you just make things worse. I think it's time for a bit of delegation - at home and work.

You must remember you do have a serious illness, and you need to look after No1 - however difficult that may be!

Life can, and does go on, but it a slightly slower lane than previously.

Take care.

MJenkins
MJenkins in reply to DorsetLady

Thank you DorsetLady, so anyone would need to pace themselves coming down off preds even if they didn't have an underlying illness - having taken preds as a precaution as could have been the case with me.

I actually go to see a neurologist tomorrow to see if they can throw any light on it.

MJ

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to MJenkins

Yes, once you've taken Pred for 3 weeks your own adrenal glands stop working. Pred is really only a chemical equivalent of adrenaline. So if you suddenly stop, then your body has no adrenaline being produced and can cause all sorts of problems. This is why you should carry a card stating that, so if you have an accident and cannot tell medical staff you need to keep taking Pred.

In U.K. It's blue, and can be obtained from pharmacies, and some doctors surgeries. Sure it's much the same in Australia.

heyjude
heyjude in reply to DorsetLady

My private thyroid endo put me on a trial dose of 10 mg of pred for 2 weeks, suspicion of Pmr. By day 9 , not improved, arrived in spain for 3 days.. Day 12 some relief, felt better when home so took 15 mg for 3 days, then run out. 48 hours later back to squarevpne.confused as whether rest and dry heat helped. Low adrenals ate a problem for me, as well as a struggling thyroid. Would being on pred for 15 days made my adrenals worse. Felt dteadful since. Realise 10 mg was low dose. Endo willing to give me another trial on 15 mg but gp refusing a prescription. I have been ill for 17 years diagnosed with m.e .but now hypothyroid, so may been misdiagnosed. Endo didn't do crp or esr test. How long would i need to be off pred to do these tests? Used to muscle aches but upper arm pain only started in January aftet having a nerve conduction test?

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to heyjude

Hi,

Can't really answer, not medically trained, but I wouldn't have thought that taking Pred at 10-15mg wouldn't have helped matters.

If you're off Pred, and have PMR then you can have your ESR and CRP done. The cytokines that cause the inflammation are produced every day, so no Pred the inflammation builds up again.

Don't really understand why GP refuses Pred if the diagnosis is uncertain. Previous trial would indicate that it could well be PMR. Any chance of getting CRP/ESR tested and maybe discussing with Endo/GP again.

PMRpro
PMRproAmbassador in reply to heyjude

If your GP isn't helpful - find another or insist on a rheumy referral.

heyjude
heyjude in reply to PMRpro

I have to report back to endo in 2 weeks after an increase in thyroid meds and reasses the pred. Although gp won't prescribe pred, she said if endo wanted to give me a prescription it would be ok. Bit hypocritical. It's a shame as usuallly we get on really well.She's probably been dictated to by the senior partners as she's one of the young gp's. I'll get the tests done and ask to see a rheumy too. Imagine there's a wait on nhs in Wales to see rheumy. Thanks so much for the advice.

PMRpro
PMRproAmbassador in reply to heyjude

Given the stories I've heard about GIG Cymru and rheumy availability, if your endo will give you a prescription for pred I'd take it and run - even paying privately it is pretty cheap.

Have I asked - where are you?

heyjude
heyjude in reply to PMRpro

Thanks. That doesn't suprise me. I'm just over the severn bridge.

PMRpro
PMRproAmbassador in reply to heyjude

About time a few of you got together and started the Weston super mud support group...

If you moved to the other end of the bridge you could go to Bristol - they're still pretty good I gather.

MJenkins
MJenkins in reply to DorsetLady

Thank you again.

Tonylynn
Tonylynn in reply to DorsetLady

The adrenal glands produce adrenaline and cortisol. It is cortisol production that ceases as the prednisalone fools the body into thinking the adrenals are producing sufficient. The prednisalone is effectively the same as cortisol (and nothing like adrenaline !! )

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Tonylynn

Ok, noted.

Most people on here are non-medical and although some may know that both cortisol and adrenaline are produced by the adrenal glands they probably do not understand the specific differences of both hormones.

My mistake, but I was trying to convey the fact that when Pred is used for more than 3 weeks your own adrenal glands cease to work. Precise medical terminology may be wrong, but hopefully the message got across to the question asked.

PMRpro
PMRproAmbassador

Not having a raised blood test doesn't mean you don't have GCA and nor does a negative biopsy - it merely means they didn't find the giant cells they were looking for.

Are you doing too much? Indubitably! And it is interesting your symptoms returned when you did even more - PMR/GCA don't sit well with stress of any sort.

If your neurology appointment sheds no light - and your GP doesn't have the confidence to disagree with the rheumy, I'd look for a second rheumy opinion if you can. Do you have GCA? The symptoms suggest it isn't impossible. And I REALLY don't think it is just sinus problems.

But whatever it is - you have something and you need to take things a bit easier!

MJenkins
MJenkins in reply to PMRpro

Thank you PMRpro. I really must slow down as I've been reading about and take the reducing far more slowly.

MJ

I had similar experience. I have damaged sinus so it's difficult to tell one pain from another. So far rheumy says I do have GCA and GP says I don't! Certainly sinus probs are greatly reduced by taking pred. Definitely living a quieter life helps. I only work 2 days a week now. I slept from 11pm to 12 noon on Friday and had a pain free weekend. Good luck to all of us while we swim through this murky river. With life belts like PMR pro and Dorset lady we will be ok :)

MJenkins
MJenkins in reply to Daisyroo

I like that thought, 'good luck to all of us'. Visit with neurologist today, didn't find anything neurological wrong with me, but they will do a couple of tests anyway.

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