GCA relapse saga: Having been diagnosed with GCA in... - PMRGCAuk

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GCA relapse saga

Avon14 profile image
66 Replies

Having been diagnosed with GCA in April 2021 I have followed the recommended reduction in prednisolone from 60mg to 4mg when I noticed the return of head and jaw pain. I contacted my GP who said if I thought it was a return of GCA I should contact urgent care. I called 111 who advised me to go to my local A&E where I waited for 4 hours to see a Dr who said my GP should be dealing with this! He took bloods and advised to double my Prednisolone to 8mg and he would arrange an urgent ultra sound and rheumatology appointment. After a week of feeling awful and not hearing about an appointment I contacted the rheumatology secretary only to be told there was no record of me attending A&E so no appointments pending! To cut a long story short, I have had a scan which confirmed GCA bilaterally and had a rheumatologist appointment. My rheumatologist has upped the prednisolone to 20mg but wants me to go on to Methotrexate and another medication which she needs approval for. I'm also suffering from horrible indigestion/stomach irritation (despite taking Lansoprazole), probably due to the Alendronic acid, although I have had antibiotics for a UTI which is persistent and still present.

I would be very grateful for any help/suggestions as to questions I need to ask regarding starting Methotrexate or other meds which although the doctor hasn't named believe they are a biologic.

Many thanks.

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Avon14
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66 Replies
SheffieldJane profile image
SheffieldJane

The other med is Tocilizumab that your Rheumatologist needs to apply for, for you. I must say, I am not impressed with the way you were treated by A&E thank goodness you are on the ball. Tocilizumab should not be taken if you have diverticulitis. I hope your Pred dose is high enough to safeguard your eyesight. It is the only drug that offers that protection. Did you have a bone density scan that showed a definite need for Alendronic Acid? I have managed to swerve it so far with good DEXA scan results.I share your symptoms of abdominal pain and frequent UTIs, it’s miserable. I feel like a hamster on a wheel seeking a solution. I hope you have better luck. You have been a good self advocate so far!

Avon14 profile image
Avon14 in reply to SheffieldJane

Thank you for your speedy response. I have had a DEXA scan which confirmed osteoporosis (-2.8, -2.6). I do think the AA has irritated my stomach along with the antibiotics. My rheumatologist had said I can try a different med for my bones. So hard to self advocate when feeling so rubbish but sadly other than this forum no alternative. I do hope your symptoms ease as you say so miserable.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Avon14

In that case I would opt for different bone density med - an infusion would better. Have a look at this for options -theros.org.uk

Avon14 profile image
Avon14 in reply to DorsetLady

Thanks I’ll take a look.

SheffieldJane profile image
SheffieldJane in reply to Avon14

I know and morale can be quite low amongst medics at present. I think this impacts on how receptive they can be. Good luck.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to SheffieldJane

Yes I’m sure that’s true -even the very good ones!

DAW28 profile image
DAW28 in reply to Avon14

You can have Alendronic Acid by infusion once a year. It is called Zolendronate. I could not tollerate the Alendronic Acid pills. Perhaps you could mention this to your Rheumatologist.

PMRpro profile image
PMRproAmbassador in reply to DAW28

Zolendronate isn't a different name for AA - it is a different substance so it can be given by infusion.

DAW28 profile image
DAW28 in reply to PMRpro

Thanks for that, I just wanted the lady to know that there is an alternative to the horse pills which I found very difficult to swallow!

PMRpro profile image
PMRproAmbassador in reply to DAW28

I only mentioned it because doctors can be deliberately very obtuse ..

Avon14 profile image
Avon14 in reply to PMRpro

Thank you for clarifying .

Avon14 profile image
Avon14 in reply to DAW28

Thank you, I will ask about this.

Luciejc profile image
Luciejc in reply to SheffieldJane

Are you taking prednisone with food or milk? It makes a big difference with stomach problems,

Avon14 profile image
Avon14 in reply to Luciejc

I am, always immediately after my breakfast. My stomach had actually been okay until I started the alendronic acid and had antibiotics. Too many meds!

SheffieldJane profile image
SheffieldJane in reply to Luciejc

Always Luciejc, for the last 6 years. My pills have been all coated until the lack of availability of 1mg coated tablets. I also take Lansoprazole which doesn’t seem to help.I think Tocilizumab triggered the issue and Pred makes it more painful. Thanks though. I would never take them on an empty stomach. I think that they really are harsh.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

Sorry to hear this, and nil points for both GP and A&E....

Just for interest who diagnosed GCA originally and have you been under rheumatology department?

If so, that really should have been your first port of call, although with such a quick taper, not too sure about them either! Would have expected a slightly higher dose in the circumstances.

As for MTX and/or TCZ ( Tocilizumab) cannot help, sorry, but as mentioned by SheffieldJane t would also question do you really need to be on AA.

Avon14 profile image
Avon14 in reply to DorsetLady

Thank you for your response. Originally in April 2021 saw a trainee GP at my local surgery who spotted GCA and started me on 60mg of prednisolone, I then had a scan and was seen in the local hospital rheumatology dept. Diagnosis seemed quick, however was then just left to follow a prednisolone reduction programme with a phone every 3 months from the rheumatologist. I’ve felt incredibly spacey, balance problems and like a zombie until I got down to about 6mg of prednisolone when I started to feel better. Then after about a month the jaw and head pains came back.

I did try the rheumatology helpline but they still haven’t returned my call. It doesn’t sound an efficient system for such a serious condition.

Hopefully I can drop the AA and do more research on the other meds.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Avon14

Not it’s not - it’s abysmal!

Well done that trainee GP - good start, which unfortunately then went downhill a bit it would appear.

You should have had better care when reducing -and it may have helped with your zombie like feelings - I know most things are done by phone nowadays-but the doctor really does need to see the patient -especially with something as serious as GCA.

Hope things improve and you get better care going forward.

Avon14 profile image
Avon14 in reply to DorsetLady

Thank you. I did see a private ENT consultant as the rheumatologist said my symptoms weren’t the GCA or prednisolone but no abnormalities found. I also had neuro physio which helped a bit with my balance.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Avon14

Good -but too fast a taper can have its own issues… Many doctors wouldn’t agree, but…

PMRpro profile image
PMRproAmbassador in reply to Avon14

That is appalling - GCA is a medical emergency - very good by the trainee GP, very poor service from the specialist who should know better.

ENT? What were the problems? Ears are implicated in GCA:

healthunlocked.com/pmrgcauk....

leading to balance issues. So sorry - the rheumy was probably not correct.

Avon14 profile image
Avon14 in reply to PMRpro

Since starting on Prednisolone I have felt spaced out (not dizzy), balance problems, had blurry vision and just feel like a zombie. As I reduced to under 7mg these symptoms reduced to almost normal. Rheumatologist certain it wasn't the GCA or Prednisolone advised me to consult GP who diagnosed meunière's and did an ENT referral. The wait for ENT was 18 months so I consulted a private ENT specialist who disagreed with the meunières diagnosis and suggested it was an imbalance of vestibular /propreoception/ visual and arranged for the neuro physio which was a helpful with the balance issues. I also had an MRI of brain and ears with no abnormalities found.I had read about the 8th cranial nerve and mentioned to the ENT consultant but he discounted this.

The spaced out sensations have returned since increasing the prednisolone.

Plains profile image
Plains in reply to Avon14

What scan did they do for GCA?

Avon14 profile image
Avon14 in reply to Plains

I've had ultra sound scans, a CT of cartoids, brain and ear MRIs. The ultra sound scan showed evidence of GCA on both sides the other scans showed no abnormalities.

Plains profile image
Plains in reply to Avon14

Thank you. I just had an MRI, waiting for the results. Going to an eye doctor today. If both show nothing I will request a Cat scan. Hope you feel better soon. Thanks again.🌻

Plains profile image
Plains in reply to Avon14

My MRI showed I may have possibly had a old lacunar infarct right side of my head. ( how old is old is my first question) This area is where I have been having ear and head pain. I am going to see a neurologist on the 20th. I had an ultra sound a few months ago of my carotid arteries, which they said were fine. I am going to push the rheumatologist for a CAT scan or another ultra sound. I know something is wrong. Very frustrating.

PMRpro profile image
PMRproAmbassador in reply to Plains

Even they can't tell - just the difference between recent and not recent ... An MRI often shows more than a CT.

Avon14 profile image
Avon14 in reply to Plains

Oh goodness, such a long and painful time for you. I do hope the neurology appointment is fruitful, absolutely, do persist for further investigation.

PMRpro profile image
PMRproAmbassador

Well for a start I'd drop the alendronic acid for now - you won't crumble! If that helps the gastric problems - hold out for bisphosphonate infusions if you REALLY need it. Some people get gastric issues with the PPI (lansoprazole).

I have to say - to get from 60 to 4mg in barely over a year is VERY fast and it is well known to flare up for the first 18 months. Why are they in such a hurry - really doesn't do patients many favours.

SJ is right I think - she wants to get approval for tocilizumab/Actemra for relapsing GCA. Lots of discussion about it on the forum. However - there really isn't any evidence for using methotrexate (MTX) in GCA. The UK national guru, Prof Dasgupta has said as much very clearly. They are using it for patients after tocilizumab which is restricted in the UK to use for one year - I suspect like using it for PMR, it works for some people and you only find out by trying.

Avon14 profile image
Avon14 in reply to PMRpro

Thank you for your reply. I’m going to drop the AA and go for the infusions if necessary. My rheumatologist was keen to get me on to the methotrexate. If tocilizmab is restricted to 1 year, what then?

PMRpro profile image
PMRproAmbassador in reply to Avon14

If the GCA isn't in remission some rheumies switch to methotrexate. There are a few UK members on the forum who have had their year of TCZ - though in fact several have had it for 2 years thanks to Covid. You could raise a post and ask for their experiences.

suzy1959 profile image
suzy1959

I would suggest that your GCA never actually went away but that you reduced the pred too far and/or too quickly and have had a flare.I am no expert n GCA, but it sounds to me that you will not be on enough pred to get rid of the accumulated inflammation and the risk to your sight. You may well need more pred now, especially while you wait to get the Tcz. Your doctor put you on a very strange reduction schedule that was almost bound to fail!

PMRpro profile image
PMRproAmbassador in reply to suzy1959

I'm surprised at only 20mg for confirmed GCA from a specialist rheumy! and as for the 8mg in the ED - I;m speechless ...

Avon14 profile image
Avon14 in reply to PMRpro

Nothing surprises me with this condition anymore.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Avon14

Actually it the people treating the condition that’s invariably the problem -not the condition itself.

Avon14 profile image
Avon14 in reply to DorsetLady

Definitely. Is it just rheumatology?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Avon14

They seem to have their fair share -or perhaps it’s just because we hear a lot about them on this forum!

Although have to say when Kate hubby was under cardiology they certainly had a different attitude -but that’s to be expected of course.

A dodgy cardiology issue can kill quickly - not quite the same with rheumatology matters.

Avon14 profile image
Avon14 in reply to suzy1959

Thank you. I’m thinking that too. Although I found prednisolone very debilitating and wanted to get off as soon as possible obviously didn’t want to be in this position. I was left to follow published reduction program. My rheumatologist is checking bloods and may increase prednisolone.

SheffieldJane profile image
SheffieldJane

Oh dear! Your bloods will not show much if any inflammation of you are on Pred. You don’t seem to be surrounded by competence I have to say. Symptoms rule with this.

KASHMIRI1 profile image
KASHMIRI1

Good morning l have GCA which was diagnosed in 2020. I have had similar A and E experiences as you describe. My doctor who seems to just want to pass any issues l have just passes me on to someone else. The A and E people weren't happy neither was my rheumatologist who all said the issues l had should have been dealt with by the GP. One thing l had was weird bruising. The doctor asked me to test it by pressing them. This was a phone consultation and l have not been trained for years to diagnose health issues or are paid a lot of money. I then had antibiotics twice which set of a very unpleasant stomach problem. I stopped the Alendronic Acid and was given esomeprazole for it. Which helped a bit. I then had famotidine twice a day which helped a lot. I am due to start Meth next week and l hope it helps me get my steroid dose down below 10 mg.Good luck to you and l hope you feel a bit better soon.

Avon14 profile image
Avon14 in reply to KASHMIRI1

Thank you for your reply, sounds like many of us are experiencing very negative and disappointing episodes when we at our most vulnerable. I hope the Meth is helpful and your steroid reduction goes well.

Amkoffee profile image
Amkoffee

I want to address your UTI. Have they grown a culture of your urine. It's important that they identify what bacteria is infecting you. I souvlaki with this and after growing a culture they found that I had a bacteria that required a special kind of antibiotic to kill. Well actually I had 2 bacteria growing but one was the common ecoli which is easy to kill. BTW UTIs can eject older woman in ways that are quite different than when we were young. This is why they are often overlooked.

Avon14 profile image
Avon14 in reply to Amkoffee

Thank you for your reply. Yes, they have sent my sample off for culture and e coli was present, still there despite 2 courses of antibiotics. I was also informed that they do not send samples for culture in adults over 65, I had to remind them that I am under 65! Just sounds so ageist!

PMRpro profile image
PMRproAmbassador in reply to Avon14

That is wrong - it is in over 65s that they need the culture because the dip tests are inaccurate for older patients.

Amkoffee profile image
Amkoffee in reply to Avon14

It certainly does. I don't understand what age has to do with it.

PMRpro profile image
PMRproAmbassador in reply to Amkoffee

I have to ask - what did autocorrect turn into souvlaki? Maybe a solution to the food crisis in the 3rd world ...

Amkoffee profile image
Amkoffee in reply to PMRpro

Lol! It should have said suffered. I do proof read my posts but I missed this typo.

Helipad profile image
Helipad

I have GCA and have been on Tocilizumab for 19 months now, I am on 2.5mg of Prednisolone every other day. I go to the Southend Hospital Rheumatology Dept. Which Prof Dasgupta was the head of but has now retired.

Avon14 profile image
Avon14 in reply to Helipad

Thank you for replying. How have you found Tocilizumab?I have heard of Prof Dasgupta and his good work, hopefully it will continue. Sadly my local hospital doesn't appear to have the same degree of professionalism.

Helipad profile image
Helipad in reply to Avon14

The Tocilizumab seems to be keeping it under control luckily. At one point I was on Prednisolone, Leflunomide and Tocilizumab. Unfortunately it appears that they don’t have anyone to take over from the Prof yet so I’m a bit in limbo and don’t know when I will be speaking too or seeing anyone from Rheumatology,

Avon14 profile image
Avon14 in reply to Helipad

Glad to hear the Tocilizumab is keeping it under control. The uncertainty about the condition, treatment and professionals involved really doesn’t help with our confidence to overcome these conditions. Hopefully someone in the department will step up.

Dressage_Diva profile image
Dressage_Diva

Sorry to hear of your very shabby treatment, good on the trainee doctor for spotting it. I was diagnosed with GCA and Aortitis in Nov 2017. I went onto 60mg pred immediately and very slowly over almost 2 years got to 3mg (plus mtx tablets for 4mths) and had a massive flare in Oct 2019. The mtx had been innafective, went back up to 25mg pred and my rheumatologist applied for me to have Actemra ( Tocilizumab) which had only just been approved for GCA. It worked amazingly well and I was off pred in 6 moths. The funding for Actemra was extended due to Covid with a few months here and there when it was stopped. In those months I was given Leflunomide which I had to stop as it affected my liver and last summer I had MTX injections which made me feel very ill but luckily the funding came back when the covid case whent up and I was back on Actemra. The funding has stopped again and I have 4 injections left. I have felt very well and suggested to the rheumatologist in May, injecting alternate weeks instead of weekly until it runs out and then stopping everything and see what happens rather than starting Mycrophenolate as a control drug. After a lot of discussion she agreed. So far so good and I have my last injection on 30th August. If you get the chance to have the Actemra for 12 months grab it with both hands, it's amazing stuff, the only side affect is that it raises your cholesterol and you might have to take a statin (I'm on 10mg). It's a biologic and basically, it just targets a certain set of cells in your immune system which stops whatever causes the GCA.

I hope the next stage in your GCA journey is better and more successful than the beginning. Good luck and I hope it works for you.

Avon14 profile image
Avon14 in reply to Dressage_Diva

Thank you so much for your kind words and sharing your experiences. I am now more comfortable with the possibility of actemra if it is suitable for me.

phebamom profile image
phebamom

I am in the US. PMR 20 plus years, GCA 12 plus. I ran from doctor to doctor for years being misdiagnosed, sent to psychologists, etc. That is probably why my PMR/GCA is now a lifelong issue. I finally found answers at Mayo clinic in Minnesota. I spent past 12 years on prednisone. Down to 5mg. dose On Actemra/Tociluzimab for 18 months now. SED rate down to 15. First time in over a decade it is below 50. Methotrexate has shown to not be effective as a medication for GCA, yet doctors still prescribe it. I could not tolerate the side-effects. I have minimal side-effects from the Actemra. I get a monthly infusion. In the US, Medicare will not pay for the shots, only the infusion. I was really tired after the infusion, now I don't even notice it. I can tell when I am needing the infusion. I start getting the old aches and pains back, but it gets better each month. Rheumy told me I will probably be on 5mg prednisone the rest of my life. He said to get off it would risk a relapse. Every time we have tried in the past I relapse. I now have a wonderful rheumy and a great primary, but had to walk through the seven levels of hell to get there. There are some really bad doctors out there. I do not do any prescription meds for osteoporosis. My primary knows I refuse to take the bisphosphonates in any form. I take Liposomal vitamin C 500mg. daily, Magnesium Malate daily, when I don't forget it. I get my calcium through my diet only. Thanks to Actemra I can now walk a mile a day, although I also have vein issues so struggle with it. Liposomal Vitamin C will not hurt your tummy. I have had stomach issues for 25 years. I think it goes along with the illness and the long term pred use. I take Prevacid 15mg. I was doing one time daily, doctor upped it to 2x daily this week. I have had stomach surgery twice for reflux. Osteoporosis is not a disease, it is a part of the aging process in developed countries. One doctor, a Dr. Levy, a cardiologist has written several books on the subject. he states that calcium supplements are actually harmful, that what is needed is magnesium and vitamin C. So I am trying that. I find that calcium pills make the tendonitis part of this illness flare like crazy. I tried for years to take calcium supplements. It has been a yoyo, I take the calcium, it builds up in my body, I end up with tendonitis and bone spurs on my heels. I stop the calcium, the tendonitis and spurs go away. I then start to feel nervous that I am not feeding my bones. I start the calcium, tendonitis and spurs return. I can drink milk and eat cheese, I am fine, but the pills give me fits. If I were you I would stop the Alendronic acid. You will not crumble to dust. Eat a nutrient rich diet. Limit sugar and salt. Try a different PPI to help your tummy heal. I could not do Prilosec, but tolerate Prevacid well. I was on 80mg. per day of Pepcid AC. it has stopped working. Some people do better with Pepcid, it is not a PPi, it is what is called an H2 blocker . Gaviscon liquid is very good, and I read in the UK it is a healthier formula than in the US. Our version has aluminum in it. Still, I should hold stock in the company as much Gaviscon as I have consumed over the years. If you are on a PPI you should be taking a magnesium supplement anyway, and Vitamin b. Those nutrients are not absorbed and can become deficient when a PPI is taken long term.

I have kidney issues, and every time I take an antibiotic I have issues with my kidneys. I had UTIs in the past. I am constantly being scolded by doctors for not drinking enough water, and for me if it is not milk, it is just water. Fruit juices contain acids and fructose which are hard on bad tummies. Soda pop is just a no no. No pop for me since 2017. The phosphates in fizzy drinks pull calcium from bones, and are horrific on tummies. Tea, which I adore, contains tannins, which are caustic on sore tummies. So, drink as much water as you possibly can. In the US I take Solaray brand LIposomal Vit C, and Source Naturals Magnesium Malate. Sorry for the long post Hope it helps someone else.

Avon14 profile image
Avon14 in reply to phebamom

Thank you for your message, it has definitely been a long and arduous journey for you. I’m definitely going to stop the alendronic acid, possibly seeing alternatives and becoming more comfortable with the possibility of Actemra. I certainly will try to drink more water and look more closely at my vitamin and mineral intake.

phebamom profile image
phebamom in reply to Avon14

There are horror stories on the internet concerning Actemra. I read them and stopped treatment one time out of fear. Big mistake as illness came roaring back. Had a long talk with rheumy who told me to ignore that stuff and take the Actemra. The disease is worse than the drug in this case. I notice sores take longer to heal, but I had that issue prior to Actemra. Other than high cholesterol, a side-effect, and high BP, which we are learning in my case is from sleep apnea, not Actemra, I have no side-effects from it. The first several months I was very tired a day or two after. Now, I hardly know I am getting it. I also did not gain weight on it. I did gain weight when I started BuSpar for anxiety, but just 10#, and I would not trade it for the world. BuSpar stopped the constant anxiety and ruminating.

Islandgirl50 profile image
Islandgirl50

That is such a fast reduction if you were only diagnosed in 2021 ! I was diagnosed in June 2016, initially started on 65 mg then down to 65. 1/2 mg ( my weight was 62 kg ) , weaned down very gradually as per instruction from Rhumatologist. , so that took 5 1/2 years to taper ! I was aso taking methotrexate as I do have RA .

I found the book GCAUK (?) very helpful . Please take care , it is a horrible condition but there is light at the end of the tunnel . Angeline 🙏🌹

Avon14 profile image
Avon14 in reply to Islandgirl50

Thank you for your support. I’ll check out that book.

PMRpro profile image
PMRproAmbassador in reply to Avon14

I'm not sure what book is meant - I know of nothing with that titel. The most likely is Kate Gilbert's A Survival Guide

healthunlocked.com/pmrgcauk...

It is available from Amazon and as an ebook - I'd give the link but I get my account page if I look for anything there!

Avon14 profile image
Avon14 in reply to PMRpro

Thank you, I have read Kate Gilbert’s book and found it very helpful.

Chipola profile image
Chipola

Resist going on to Methotrexate as it doesn't appear to have any benefits and can have severe adverse lung effects that you should do well to avoid.

Avon14 profile image
Avon14 in reply to Chipola

Thank you, I’ll definitely discuss with my consultant.

PMRpro profile image
PMRproAmbassador in reply to Chipola

The lung effects are pretty rare though.

Avon14 profile image
Avon14 in reply to PMRpro

Thanks for clarifying. My consultant did arrange for a chest X-ray so will discuss findings when we next meet.

Chipola profile image
Chipola in reply to PMRpro

Unfortunately someone has to make up the statistics as did my husband who got opportunistic pcp. Don't let the doctors mistake symptoms for being on prednisolone and methotrexate when it is something more serious. Question everything.

Avon14 profile image
Avon14 in reply to Chipola

I am so sorry to hear about your husband. I will definitely question everything.

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