Hello, I have GCA and for two years have been on Prednisalone. Is there anyone who had had this condition and who has recovered from it?
GCA: Hello, I have GCA and for two years have been... - PMRGCAuk
GCA
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sandrathecat
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DorsetLadyPMRGCAuk volunteer
Hi, there
Yes, and yes! Me for one, and several others.
Have a look at my profile and some of my posts to see my situation - that’s if you feel strong enough! You have plenty of time to look, because it usually lasts considerably longer than 2 years....mine 5& half...some shorter some longer.
Thank for replying DorsetLady, I have been up and down on the prednisolone but generally feel well. I am due to see a rheumatologist this week and am worried he is going to try me out on new drugs and I don't like the sound of the side effects. So, if I can see there will me an end even if it is a few years I will stick with the steroids. Can I ask if you were on any other drugs? Best wishes.
No I wasn’t , nor was I pressurised to reduce too quickly.
My experience with GCA at the beginning was very traumatic, but I have to say once settled, things ran relatively smoothly.
But as jinasc says it only goes into remission - it doesn’t go altogether, something that’s causing me a bit of a problem at the moment. My ESR is raised, but not exactly sure why - have been in remission for over 2 years so am hoping it’s something else going on!
Thanks for taking the time to reply to me. I hope your ESR readings turn out to be just a blip. Very best wishes.
Thanks
Hi DL. sorry to hear you are having problems as you appeared to be doing so well. It was you that gave me inspiration when I was going through my bad patches, having lost my sight 9 years ago. However like you my ESR has risen from 21 to 47 for no obvious reason. GP was on the ball this time and rang me and immediately instructed me to take 40 mg of pred. A bit of an overkill but rather safe than sorry. I have had intermittent headaches and a tender scalp for a few weeks but nothing which gave me any great concern. I suggested to GP over the phone that I should have an eye test to check pressure but she things a biopsy is the way to go which I think will be a waste of time as I have been on pred for 9 years. I was down to 6 mg before this episode. Like you probably I am finding this increase in ESR rather worrying and hope it is something more straightforward. Good luck hope it is good news for you.
Thank you. Have raised another post re this. Think it’s probably due to other issues, as have been in remission for and a bit years with no problems, but one can never be 100% sure. No headaches or eye problems.
I was at 2 sed rate and 2.5 prednisone and weekly shot Actemra for a long time and last summer the sed rate just kept rising. It was because of a bladder infection and starting up of Dividiculitis. Dividiculitis was most likely a side effect of the Actemra. Sed rate at last test is 19. Came down from almost 100. Feeling awful body pain with the loss of Actemra doc started me on methotrexate. Because I get terrible side effects from higher dose prednisone, she did raise s little. Prednisone is now 7. Just wanted to mention the infections. Bladder infections present differently in older age then we are able to recognize. Easy to be overlooked. I hope people take note of this. Also, mine was not susceptible to oral antibiotics. I was put on antibiotic IVs daily for two weeks for a form of E. coli infection. 🌺
GCA 5 years then remission coming up to 11th year. You can read my story by following the link.
pmr-gca-northeast.org.uk/st...
I do know more people and one who went into remission after two and a half years, but she was in her early fifties when diagnosed.
DL is correct it does last considerably longer and remember there is no cure, it just goes into remission.
Thanks for your reply. Trying to get my head around the fact that this can't be cured but am hoping that mine will go into remission given time. It has been two years now so I might have a way to go. Every time the doc lowers my dosage my readings go up although I feel perfectly fine. My doc says normal ESR is between nil and 15 but I read on an American site that for women over fifty normal is up to 30. Who knows who is right!
Hi Sandra
I have GCA and have been on steroids since April 2013. I was told by the Rheumatologist I would be off them in 2 years which I now know from this Forum is very rare. I have got down to 3mgms twice and I am currently on 7mgms.
I have learned that it simply takes as long as it takes and as long as you feel well that’s all that matters.
The normal ESR is up to 30 and can go up even with a cold. The more reliable is CRP and that should be 7 or below.
It’s a combination of clinical symptoms and inflammatory markers.
You will get there.🥂🥂
Thanks so much Edith for your kind reply. You have cheered me up! I confess to having felt a bit down about it all lately but feel more positive now. My last ESR reading was 25 and the CPR readings were 3.
That’s absolutely fine. We all get ups and down, it seems to be part of it but you are doing well🥂🥂
Thanks Edith.
What is more to the point is that any one person has a normal level for them - the range the doctors keep saying is OK applies for a large population of healthy people, usually 10,000 or more. In the past it was assumed that ESR naturally rose with age but more recently it has been realised that the older patients weren't as healthy as was thought and probably had low levels of inflammation due to arthritis - or even PMR! So now it is taken that 20 and over is probably a sign of inflammation - especially if there are appropriate symptoms present.
But if your ESR rises when you drop the dose, the correct thing to do, in the absence of symptoms, is to wait a week and check again to see if there is an upward trend. If there is, the dose needs to go up again. What is the lowest your ESR has gone down to?
Have you been under a rheumy before? Who looks after your reduction? Can you tell us a bit more about doses and how you were told to reduce? Maybe someone can help a bit before you see the rheumy.
This is my first trip to see a rheumy coming up this Wednesday. My dose was started at 40 when I first had symptoms two years ago. I got right down to 2 after almost a year of steady dose reducing and then got ill again with headache and severe jaw pain and a reading of 35 so was put back up to 40mg and started a slow reduction again. Got down to 10mg after another few months and then my readings started slowly going up again. The last three monthly readings have been 8, then 12 and now last month 25. Doc has decided to leave me on 10mg until I have seen the rheumy.
For goodness sake - no wonder you have had problems, GCA belongs in the hands of a specialist not a GP, they are out of their depth and, boy, I'd say yours was out of their depth.
This is a hard read for most people but if you look at p346 of it you will see a box with a suggested taper for GCA from a top group of rheumies, the rest of it is further up the paper under a PMR taper:
rcpe.ac.uk/sites/default/fi...
They would probably have started you at a higher dose - but they would have taken well over 2 years to get you down to 2mg. There is evidence (also from a top GCA rheumy) that there is still active disease after 6 months at above 20mg and it is well known that relapses are common at any time in the first 18 months - and the main cause of relapses is reducing too far and too fast. And since your ESR is rising steadily, and has been doing so for 3 months, your GP really should have put the dose up, not necessarily back to the start but at least 5mg above where the rise started.
Good luck for your appointment. Take a note with you of your journey so far - doses and times. It will help your discussion with the rheumy.
Great information , I will read that.
Thanks for the info which is great. Have just started reading the Kate Gilbert book.
I forgot to say that what I have found most difficult has been the constant fear of losing my sight as my GP just handed me a computer print out about GCA and there it was in black and white that I might go blind but no-one actually discussed with me what the chances of that were.
The most likely time is pre diagnosis - as I found out unfortunately. Once the inital inflammation is cleared, and as long as you keep the daily production of inflammation under control by the correct dose if Pred, it is highly unlikely. But if course it is the one thing that people always worry about - understandably. And if you have any visual issues you must act.
Be vigilant- but not paranoid!
I'll try not to be paranoid! I do wake up each morning and check first one eye for sight and then the other. I am so sorry to hear that you have sight problems. I wonder if the docs will ever get to grips with this illness. I had never heard of it before and I suspect this must be true of most people.
One day hopefully - but as you rightly say very little known about it in the big wide world!
Great saying , Be vigilant , Not Paranoid ! Brilliant advice for GCA and PMR
Which is why a GP isn't enough...
I can see that now. I just don't know what to do next. Will see what the rheumy has to say. Thanks very much for everything.
As this is your first time ever with a Rheumatologist it will help them with their evaluation if you take with you any personal notes you have of your experience so far.
A summary of any diary you might have kept of your progress and symptoms , including a brief summary of your previous medical history before GCA.
A summary of your progress can include you original symptoms and date of diagnosis , what your blood tests were then and what dose you were put on .
Then , your tapering history , when you had flares ( and those blood tests which confirmed it ) and what dose you returned to. Until you get to the present dose and symptoms.
If you have had new symptoms during your GCA, or any other illness or infection, and side effects you should note those too.
You also need to include a list of all the medications you are taking presently , any other test results you have , like BP etc, and any other conditions you are currently being treated for.
If you have a computer , you can easily write it on there and print off a copy to give to your Rheumy , and one for yourself to look at in the appointment . It helps if you are nervous because it reminds you and helps to stop the forgetfulness that can happen in appointments.
Any , and all , of this information can be requested in a GP medical history summary from your surgery in the UK . But if you don't have time to get that information back before your appointment , don't worry , still request one for future refernce.Create your own personal file of information to take to all your appointments and it is easier for you to remind yourself of information or answer questions when you might feel flustered in all future appointments.
I always take a notepad with me as well to note down anything they say that I want to remember , as Pred head and nerves can make you forget things . I politely explain upfront why I have it , good doctors understand.
I write any thing they say neatly later, as my own notes, and date it for reference and add it to my file , just so that I can refer back to it in future appointments ,or, if I need to chase up an appointment or test , or they seem to change their minds from one appointment to another. That's really important if you don't always see the same doctor twice.
On that notepad I always list any questions I know I want to ask in an appointment and tick them off . I do this with any doctor , even the GP , so that I don't walk out of the surgery then kick myself because I forgot something. Then I write their answers on my pad too , if there is something I don't understand or that worries me I can easily post on here then and ask for help.
You want as many answers as they can give from your Specialist appointment , so , try to stay calm and rest well the day before and after, as appointments can cause more tiredness. And don't let them rush you , if they are trying to get you out of the door , but you still have questions important to you , just be like Columbo , and politely apologise for keeping them but you would really like to ask one more thing.
It works.
My only other suggestion is , as you don't mention that you have been seen by an Opthamologist during your GCA that you let the Rheumatologist know this and politely but firmly ask them to refer you to the Eye Clinic or Opthamologist to confirm all is well with your eyes . It's important , you should really be having your vision monitored during your treatment to ensure your Eye and retinal health. They should do it , as well as sending you for any tests necessary , but if they suprisingly don't, and state that you need to do this through your GP , then ask if it will be possible for them to ask your GP to make you a referral in their clinic letter to your GP . When you GP has received the letter , ring them and make sure they have seen it , and check they have ordered any tests or referrals they were meant to .
It's good to be proactive in keeping these things running smoothly , you don't want your letter to end up at the bottom of a very big pile.
Finally , request that they send you a copy of your clinic letter too in the appointment, it is your right to receive one, and it is good to have any records to add into a file so you can follow up anything with your treatment later.
Relax as much as you can , and I hope things go well for you. Let us know how you get on , take care , Bee x
Thanks Bee for the fab advice. I shall do as you say and take detailed notes with me when I see the rheumy on Wednesday. I think my problems with my GP started when I had a biopsy that came back negative which my surgeon told me at the time means nothing really. My GP has seized on this negative result despite me having the jaw pain and headaches etc. Will let you know how I get on. x
I never had a biopsy, it was too late, 3 days at 60mg and it would have been useless.
They must go on the medical symptoms, they over-ride any negative biopsy.
The GP I had at first was good as she put me on pred when I first went to the surgery unable to get about and with a shattering headache. My biopsy was a month after that as the hospital could not fit me in before then. Unfortunately that GP has now retired and the one I have now has me up and down on the pred so I am hoping that my appointment with the rheumy this week gets me some ideas about steady reduction and that my GP gets the message.
Yes , if you are prepared early you can try to relax the day before and be well rested and calm in time for your appointment armed with all the questions you want answering.
Seeing a specialist will be a really positive step forward for you , and help to make your treatment easier.
Good luck and take care , Bee xx
Thanks so much Bee. Fingers crossed that we both get on ok from now on. xx
That was my fear too, no matter how much I was reassured. It took a while for the paranoia to go. As Sue (DorsetLady) says, once on correct treatment, stop worrying about the loss of eye sight.
In the UK, 20 is usually perceived as “normal” for women after 50.
Hi Jinasc. How lucky you were to have such a switched-on GP. I had all your symptoms 9 years ago and my GP told me to take codene for the pain in my jaw and go on holiday and enjoy the sun, which I did and five days into my holiday woke to find I was blind in my left eye. Luckily I was close to Cordoba Hospital in Spain who knew immediately what the problem was and dealt with me immediately. Unfortunately they couldn't save my left eye but the treatment I received was amazing. I do not have a Rheumy or been monitored for my pred by GP. Because the waiting list for a Rheumy here in Kent was so long I paid to see one privately for 3 years. If you read my blog above like DL my ESR has now risen again which is of great concern for me. Although not officially confirmed I have been in remission for about 3 years and down to 6 mg, taking a very very slow method of reduction.
Hope you get to see someone and things improve for you soon , take care , Bee xx
Many thanks Bee. I see a GP on Tuesday and it will be interesting what treatment he will advise. I should be referred to a Rheumatologist but I doubt that here in Maidstone.
I will have a look at your blog , how do I get to it.
It will be helpful , just like these posts to see how GCA progresses and it's impact further down the line.
It is a nightmare getting a " good " NHS Rheumatologist who understands all the different things you can be suffering with along with GCA or PMR. And I know the waiting list is ridiculous . Then when you do see them if they agree with diagnosis , or it's something with no definitive cure , they have a nasty habit of just confirming your status , fiddling with your drugs , then the next moment you get the clinic letter back saying you are discharged back to GP care without them telling you.
Then if things go wrong you have to go through the same waiting list thing again.
They should really keep you on their books and monitor you with regular check ups , especially with GCA , but if they can get away with it they don't.
Do you see an Opthamologist every 6 months?
It was actually the Opthamologist that caught my GCA issues with the retinal and pressure tests they were doing for another issue.
It's best to get one if you haven't .
I'd be badgering him to get you on the Rheumatology waiting list for an urgent appointment if your markers are rising again , you deserve and have the right to be checked by Rheumatologist on the NHS for GCA . Of course , even urgent often means 6 months , but it's worth doing. The GP can't really assess what's going on or arranged the same types of tests as a Consultant can.
Good luck with it all and let me know the link to your blog. xxx
The word is EMERGENCY - urgent just means sooner than routine and probably makes about 4 weeks difference!
Yes , but it's hard enough getting them to crank up to Urgent from Routine .
Well that what I have found , it's like one of those Nuclear Bunkers in a GPs brain you have to convince all the stuffy , ill informed Generals they call Brain Cells just how real the crisis is before they are convinced to go to " Def Com 1" !!!
Even my Cardiologist said the other month that although I was bad , and get this , his actual words , " it's probably not too urgent with your dropping spells and fits from dizziness and tachycardia as long as you don't go unconscious ALL THE TIME!!"
Honestly , he said that , not an emergency or urgent unless you pass out!
I hate to think what I might have said 
I find more pred does make a major difference though - and luckily my cardiologist agrees...
Unfortunately they are still keeping me on the enforced lower dose right now and fiddling about with testing extra pain ( or should I say No Pain ) relief medications until they make their final decision on the EDS and Behcets. I can't even get signed off for NSaids or steroid sparers until they make a decision because of the way the prescription system works. It's ridiculous!
Roll on the beginning of April when I will make them decide on it one way or the other.
Can't put up with the total lack of quality of life and vision issues anymore.
You should not have to plan a trip to the toilet like a military exercise to make sure you don't drop like a wet rag at the top of the stairs , or have palpitations and headpain like thunder claps in an Austrian storm for hour afterwards just because you needed a wee.
It's no life at the moment PMRPro. Thank goodness for you lot , I would not cope with the wait without having you all to keep me sane. xxxx
Sane?????????????????? Don't rely on me
Obviously I mean my own personal form of sane , and you know that's probably far from Normal. Good job really , if I hadnt been " Differently Normal" before all this I don't think my mind would have stood up to it. Or the body count at my local surgery would have dramatically increased by now !!😋😁😂😂😂
I wonder what they feel about being asked "And a question of medical negligence if I lose my sight?????"
Believe me that's coming ....
I have only seen an NHS Opthalmogist once in 9 years. I have however seen one privately twice which I will do again if there is a problem seeing one. I will also see Rod Hughes if I am not referred to a Rheumatologist. Thank you for your reply.
Great , it's better to be safe than sorry isn't it , even if , unfortunately , you end up having to bite the bullet , and raid your piggy bank , to go private and get some expert advice and reassurance in the speed you require.
Going to a good NHS approved Optician and explaining your GCA symptoms have returned and get what I eye tests they can do there is good too , as they can also refer you to Opthamology if you can't get the GP on board. Sometimes it's the quicker , better way to get access to proper eye care .
Have a good weekend and I hope you go back into remission quickly. xx
You might be interested to know that good UK optometrist can do pretty well all the tests I get done at the eye clinic at the hospital here. They were VERY impressed!
On Friday I couldn't get my GP to refer me for an eye check they couldn't see why it was necessary!! hence the reason why I will see one privately.
Diagnosed GCA, came off the last prednisone in June last year. It took 18 months. Feeling good. Keeping fingers crossed it's completely gone, over. Who knows.
Keep the faith, Sandrathecat, it will happen.
Cheers from New Zealand
Thanks so much. I feel cheered by your message. Very best wishes.
Me too. Diagnosed with GCA and PMR two years ago. Now tapering very slowly, presently at 6.5mg Prednisone. Ups and downs along the way but in general all going well fingers crossed. Very good advice from Blearyeyed about keeping notes and having a list of questions for your rheumy. I do the same and write it up in a notebook when I get home. Here in France the rheumy coordinates with the GP by sending a letter of her findings/conclusions, A sort of progress report. The GP does the same with the rheumy so everybody is on the same page. I also have an apparatus for recording blood pressure at home (I have high blood pressure medication), This graph I take with me to any appointments as well. Keep relaxed, keep informed- things will get better.
Yes but you go into remission. They will never say you are cured.
Hi 3_ years into GCA. Havnt had a flare for over a year.. Reducing very slowly. After getting down to 5 mg am doing 1/4 mg a month and this time seems to be working. Seeing an endocrinologist in May because my adrenal production might have stopped as a result of long term steroid use. I have good and bad days but live a pretty normal life and go what I want. It is long term and I have discovered it needs patience. I had two flares simply because I was rushing to get off steroids.
Thanks for your message. If you don't mind me asking, how do you feel on your bad days? I think that my problems come from the doc rushing to get me down on my steroid dose too quickly.
It is worse in the morning. Tired even though I have slept and painfully stiff muscle's. Getting moving is a real effort. On weekdays I take my meds about 7:30. Paracetomol helps and I usually only need one dose in the morning. By 11:00 am I am feeling much better and by 3pm absolutely fine. Go I go to my Pilates classes in the evening. On a good day I am pain free by 11:00. On a bad day I feel tired and aching all day. Often if I have overdone it. I still work , mainly from home, so if I for example travel to a conference. I will feel pretty rough next day.
Do you have PMR and GCA?
Hollyow,
The adrenal glands go to sleep when ever one has a more that 10mg of pred for 5 days.
That is why GPs struggle to understand you need high doses for certain illnesses.
A Lady who posts on another forum Grandson has been on steriods since the age of 2. Now 14, without them he would not be alive. Pred is powerful, it just needs to be administered well.
Hi I have had GCA for 2 years now and after a rough beginning I am now down to 4mg. (For the second time). I have a lot of weakness in my arms and pain in my wrists which I think
Might be part of a flare as that is what happened to
Me last time I reduced. Has anyone else experienced this?
Hello, I have no pain in my wrists but have weakness in my arms when my dose is reduced. Could not get my credit card into the machine the other day without holding one arm steady with the other! I have bought a small pair of weights and try to strengthen my arm muscles by using them for a short time each day.
I have weakness and pain in arms and legs sometimes hands an feet. I don't think it is a flare but Pred reduction
I think you are right. This is a weird illness as it is difficult to tell which is causing problems the pred or the illness.
This can happen alot as you reduce to lower doses and it isn't always a flare in PMR/ GCA causing it , it can be peripheral neuropathy , or some form of nerve pain associated with the reduction in muscle strength from the doing long periods of less activity on steroids and the nerve pain / damage that would not have been noticeable on the higher doses of Pred.
Pred can mask pain from other issues.
Does it improve with other pain killers taken over a few days and very gentle rotation exercises of the wrists and other areas with pain.
If it does, it is worth getting to the GP to check for nerve / muscle pain issues before increasing the Pred straightaway without a consultation. You may be able to stay low and keep tapering with the right sort of pain killers at the right dose to treat the other non PMR pain.
Take care , Bee xx
Thanks so much for responding. I also am trying to use weights...I assume this is a normal response to reducing...!My weights are only 2lbs....don’t want to overdo it! Good luck.
Hi. I have started weights alongside Pilates. Not sure if it helps but makes Mr feel more positive
Excellent idea!
Be careful with weight. The delivery of oxygen supplied to your muscles by your bloodstream is impaired due to the inflammation, which you are trying to control with pred. Overdoing is not a good idea. Make sure your Pilates, Ti Chi, Phsyio etc all understands PMR.
Thanks for the advice. I am taking everything very easy even though it is frustrating.
2 lbs is enough I think. Hope your weakness improves. Mine comes and goes a bit. I am sure we will both get there in the end! Forgot to mention that, for some reason, I get tremors in my left arm sometimes. No idea why! Very best wishes.
More than enough to start I'd say - and for some far too much. I suggested using 500ml water bottles with some water in them - as your muscle strength improves, add more water until they are full. Then get bigger bottles...
Thanks for the advice. Maybe I do try to do too much.
Most people do! Spoons!!!!!
Great idea , thanks
Thanks so much for your reply. It seems that everyone has different symptoms....but it is comforting to know that we are not alone on our journey. Best wishes toyou too.
Exercise, they say, is important. I am not an exercise for the sake of exercise person but I do play pétanque twice (if not more) a week. Easy, sustained exercise, lots of skill and good to be in the company of like-minded friends.
I have had GCA for a year now. The consultant said, when it was diagnosed, that after the 2 years on prednisolone it was highly unlikely to come back.
Well, even supposing you got off pred in 2 years - the propensity for the autoimmune part to return remains. I know someone whose GCA turned into PMR 4 years after she got off pred for the GCA (in two years as it happens) and I know of GCA relapses and PMR relapses years after getting off pred. They are probably the same disease, just different manifestations.
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