Hello all and its me again and still all over the place.Thank you all that answered me and here is where I am now..still terribly afraid.I am waiting for my G.P to call me as I have blurred vision today.Saw Rheumy last week.All bloods normal and U.S showed slight thickening.Rheumy said no way GCA. as he has seen thousands.but I asked for biopsy that I am waiting for.I showed him all the symptoms i had.Stiffness and pain in neck/hip and shoulders.Headache or pain in temples and indeed forehead and back of head.Sweats and losing weight.He said no way and had a bad weekend with temporal headaches and not feeling well.My question is what do I do now.When my G.P calls will he prescribe Steroids and do I just take them.I am so worried about side effects.I have no trust in my Rheumy and saw here DR Das Gupta so tried to see if i could get a second opinion.I have to email symptoms to him..about 2 hours drive away.Wait to see if he agrees to see me and I guess that would be to manage this disease and tell me what to do.How fast would I need to see a Rhumy after being put on steroids and any point now of having a Biospy.Thank you all so much.xx
Waiting for G.P to call me for blurred vision - PMRGCAuk
Waiting for G.P to call me for blurred vision
One single doctor in the UK claims to have seen thousands of GCA cases? How old was he - Methuselah's brother?
Where are you? Is there another A&E that isn't the same Trust as your current rheumy? How fast? If it IS GCA, very soon ...
And breathe........Some people get no side effects at all from Prednisalone. The concerning side effects take time to come on and can often be mitigated or treated. You will possibly feel a bit lively, hopefully your symptoms will go or reduce in a few days. Ask us, if and when you need to.
I hope the professor agrees to treat you, he’s a bit of a hero in our world.
As you have no faith in your current Rheumatologist , your GP could oversee your steroid use. A number of us report barely seeing a GP or a Rheumatologist, that’s one reason that the forum is a big help.
Why don’t you make a note of your immediate questions for when you talk to the GP?
Pred quickly mops up the inflammation, therefore the signs of GCA will be obscured for a biopsy, unless it can be done immediately.
,Let us know the outcome of your talk with the GP and we can take it from there. No point in filling your head with too much information right now.
Good luck, all will be well.
Thank you all so much.i am in Emergency Dept for eyes in local hospital.My GP told me to go there immediately and she will call me tomorrow.I have a very good GP and maybe that's a thought.. never mind the Rheumy.I suppose it's natural that I would think if Dr D.Gupta is so well known in this area he might be able to help me better..just afraid I suppose. I just seen.As PRM pro said I don't think he saw thousands and I don't think I will go back to him.He said you don't want to take steroids as they will give you high blood pressure.diwbetes.weight gain and heart problems.Dont know if I should bother trying to sort out biopsy.You are very kind and reassuring as I am so frightened.Xx
Please try not to be frightened. You are at the ED now and they will go through everything and you will also very likely be seen by an opthalmologist who will be able to see the back of your eyes. He/she will be experienced in recognising any problem. We are with you in spirit and holding your hand. Your GP sounds lovely and very caring. We'll be waiting to hear how things go x
Thank you so much and bless you for such a lovely and fast response.still here and waiting for exactly that test to back of my eyes.do you think I will have to start steroids today and would you think I have to have biopsy.Thank you too D.L.xxxxx
I can't say if you will be given a biopsy but doctors there will look at your ultrasound results which can often be more reliable than a biopsy. Whether or not you will prescribed steroids will be up to the doctor. There is no need to be frightened of steroids. If they are prescribed take them safe in the knowledge that pain you have now will diminish in a few days and possibly sooner. There's always a long wait to be seen in A and E but there will be thorough investigations and you will get some answers today. Keep your chin up.🤞🏼🙂
I started steroids straight away (from hospital dispensary) and bloods retested before Ophthalmologist would let me go home.
Slightly different scenerio to you though.....
You may be booked in for biopsy or ultrasound - depends how certain they are it’s GCA.
Dr just diagnosed GCA and he was a bit reluctant to start steroids without the rheumatology but said he would not chance it.60mgs Pred.waiting for pharmacy and I come back Fri.He didn't say much about biopsy.When do I take these and since it's late will I be up all night if I take them now.I am so frightened that I will not sleep anyway.Thank you for your reassurance but I can't take it in.. thank you all.xxxxx
I would take them straight away.....they probably won’t affect tonight’s sleep too much, as you say you’ll probably be tossing and turning anyway.. a TBH the sooner the better.
As from tomorrow take in the morning with /after breakfast....and same thereafter.
Let us know how you are on Friday, and then I’ll send you a bit more info.....or before if you want....and yes it will take some time to get your head around it,
But the overriding thing to remember is - whatever side effects you may get, this drug is protecting your sight.
Take care, and we are always here for you, no matter how silly or trivial you may think your question 🌸
Thank you and will take them after dinner .. should I ask g.p tomorrow for Dexa Scan as MRI in August showed I had ostopenia and am worried about that.Do I just take Vit D and Calcium over the counter and any recommendations.How long can I be on this before it's too late for biopsy.. don't really want one now.sorry for all the questions.xx
Yes ask for DEXA scan, and also for a prescription for Calcium/ VitaminD supplement - AdcalD3 is most common.
He may want you to start Alendronic Acid, but try and get scan first- if you’re just osteopenic it may not be necessary.
When you feel able, you might like to have a read of this as well - and as I said, just contact any time -
Take them now - being up all night would be the least of your worries. There is one person on the forum who didn't take them in the evening and lost some vision by the next day. It isn't worth the risk really - whatever the downsides of pred, it is, as DL says, protecting your sight.
You should ask the doctor to write a note for the rheumy!!!!!
Hi there. I would advise taking the steroids immediately. This will be protective of your vision and bring down the inflammation. I didn’t find that they adversely affected my sleep in the early days. Keep us updated. Thinking of you.
Just ditch the Rheumy....but hang on GP.
Hopefully you get someone sensible at A&E , and don’t worry about the Pred and it’s side effects, at this moment your sight is paramount.
When you feel up to it, please update us.....in the meanwhile fingers crossed for you.
"He said you don't want to take steroids as they will give you high blood pressure.diwbetes.weight gain and heart problems"
What a chump! I had PMR for 5 years without pred. In that time I developed atrial fibrillation - due to the autoimmune part of PMR and for which I need MORE pred to keep it under control during a flare. I also need BP meds for that. I was so disabled that I couldn't exercise properly - and gained weight, Weight gain and inactivity are risk factors for diabetes and osteoporosis. And I became depressed because of isolation.
It is accepted by experts that untreated PMR is more likely to progress to GCA - and if you don't take steroids there you run the risk of losing at least some vision. Surely better to take the lower dose required for PMR and reduce the risks in general?
I know it is easy for us to say but don't be frightened - you are in the right place and they are looking at what it is. It may be something else - but they will find out.
Because I was on two blood thinners, I couldn’t get a biopsy. I was given a Transcranial Doppler and it showed that I had problems with flow. I had also been on prednisone (60mg) for a month. One year later it was repeated and the flow was ok. I am also on Actemra.
I would put money on your GP not having seen thousands with GCA or even hundreds or even dozens or even a dozen if it comes to that.
It was the Rheumy that said that..I think my g.p knows better but he is off today but other partner is excellent and had heard of it.i asked her about Dr D.SaGupta and she had heard of him as well.
It seems an odd thought but the fact the rheumatologist said he's seen thousands of GCA cases, then proceeded to list all the downsides of pred makes me wonder if he even knows what GCA is? Even my ophthalmologist knew more about pred and GCA than that - more than my GP tbh.
Sorry, I would put money on your rheumie not having seen many people either!! Definitely not thousands or even hundreds.
Agree..and that was privately.At least Dr in E.D today seemed very familiar and said he was surprised Rheumy did put me on med.He started me based on clinical symptoms I guess so hopefully he knows what he is doing..I don't know if I should continue to try and get app with Dr Ds.Gupta ..from reading nearly every posting on this Forum and some replies many just manage this disease with their G.P.Is there reasons to source a good Rheumy .other than my fear.xx
Around 75% of people with PMR never even see a rheumie. If you have a particularly bad GP it is probably a good idea. A private rheumie diagnosed me, as my GP kept saying I had a virus. In the end I could hardly move and used some of my hard earned cash on the rheumie.
Everyone has given you excellent advice in terms of taking the steroids immediately etc. Do not go back to the Rheumatologist you saw. Terrible. Stick with your GP for now as they sound clued up and realise that you need treatment straight away. I would definitely talk to the GP about your osteopenia. Vit D is essential as a starting point. I would also make it known to the GP that you now have no faith in the Rheumatologist. The people on here are extremely experienced and will give you really good advice going forward. You should may well feel better straight off the back of taking your first dose of steroids. Everything has some kind of side effects, so try not to worry too much about that at the moment. The most important thing is to start treatment and protect your eyes. You know how you feel far better than anyone else. A Rheumatologist that says that to you would ring alarm bells with me. Where are you based? There may be closer consultants you could see if Southend is a trek. Keep us updated.
Thank you all..up during the night like my temples were held in a vice and sensation still here this morning and I have taken my Pred.G.P called me and said keep my App with Hosp Friday and she will call me back Mon.So anxious I forgot to ask about Vit D/Calcium and of course the Dexiscan.Wouod it be okay to wait till she calls me back Monday and when do you think this pain in my head and blurred vision should settle down.Many thanks again..I too am very worried about the Osteopenia although I see PMR PRO says it can be reversed with diet.I see something called AA was mentioned here and read a load of reviews on this Forum and it sounds awful.I will need some advice I think on diet as cant quite take all this in.xxAlso exercise..I usually walk for over an hour a day.
It may take a few days to a couple of weeks for things to settle.....hopefully by Friday you will begin to feel the benefits.
Make a note about DEXA and Cal/VitD supplement, and either discuss on Friday or if you have facility e-Consult your GP (check here - econsult.net/nhs-patients).
AA may well be suggested, I took it without issues, but it’s not for everyone, so stall if you can until DEXA.
...and try and relax (not easy I know), but the sooner you can, the easier things will become....now you have started higher dose you just have to wait for it to kick in.
If you can sleep during the day, then do so.
The vit D and dexascan and bones and everything else are not important at the moment. Get the GCA sorted out first and REST. You have a serious systemic illness, like real flu, so try to put other things out of your mind - yes I know that is easier said than done - but it is all you can do for now. It may take a few days for the pain to settle - if it gets worse don't hesitate to call at least the GP and if possible the hospital.
Thank you.The pain is indeed very bad.Probably worse than yesterday so will take 2 Paracetamol or CoCodamol.Since I have Osteopenia I am so afraid that this will destroy my bones and I take Vit D anyway.4000U..is that enough.I really dont to have to take this AA product as well as it sounds only to more side effects.I want to try I suppose to get everything right but as you say none of this is right and I have the disease.Will try Dr D Gupta again but don't know if he is taking patients anymore.How do you choose a good Rheumy based on my bad experience.This guy is in charge of Rheumatology in local hospital and it fills me with dread.How often do you need to see a Rheumy if I found one that was far away.Thank you..you are just so lovely and helpful..i am so grateful.xxx
You must get your priorities in order. Forget the osteopenia for now - I have been classified as osteopenic for 11 years - but it hasn't changed significantly and is better than average for my age despite only taking calcium and vit D. It is a wide range and goes from nearly normal to nearly osteoporosis. A score of -1.0 is normal, -1.1 is osteopenia, but so is -2.4. Until you know where on that scale you are it's like worrying you might be run over by a bus on your garden path. Nothing will change in the next few weeks, you won't just crumble so put it out of your mind and concentrate on where you are with the GCA which COULD change overnight.
If you tell us where you are, we may be able to suggest a better alternative. Is a private consultation an option?
Thank you so much.i am based in borders of E.London and Essex.. about 2 hours drive from Southend..maybe less.Hubby says he will drive me anywhere.At moment hoping my temple pain gets a little better and my blueness and I will send DR D.Gupta an email as his sec suggested.i think he is only seeing virtual existing patients but have asked my g.p for recommendations.Yrd..the goose I saw last week was private.thank you.xxx
Rod Hughes Chertsey would be my private recommendation and he has been doing f2f consultations privately all the way through.
drrahughesrheumatologyltd.c...
Or closer for you I think is Dr. Dayavathi Ashok who also comes highly recommended:
essexrheumatologyclinic.co.uk/
Thank you so much and yes Dr Ashok is much closer as she has a private clinic in Brentwood.If you recommend her she must be good but I can't see on her profile any mention of GCA.You are so far away and so knowledgeable..thank you again.i did send email to Dr Das Gupta so will see if he responds.As you said earlier I have a little time to sort this out but it helps me to know what you would recommend.xx
jinasc on here worked with her through the NE charity - she was in Durham and Darlington Trust before moving south and also worked closely with the rheumies at Gateshead - another very good GCA/PMR department. Some who are really "in" to GCA only do NHS work - but they do all know about GCA and being a good rheumy is more important that whether they list GCA on the webste.
If it’s GCA then unlikely paracetamol nor cocodamol will help.,,
So just monitor, and obviously if things worsen then A&E....or GP - do you have enough medication to increase if GP thinks necessary?
Hopefully it won’t come to that.
Yes .I was given a week at the hospital.do you mean if the blurring or the pain get worse.If I have to go to A.E should I call first.. have never attended one but know you can be waiting for hours.Pain killers don't work as you said and I do not have fatigue..is that something that the Pred will cause.i have so many questions I apologise for this constant barrage but I am feeling very low and nobody really to talk to.Thank you and you are all so brave here..I looked at your profile last night and PRMPro.. you are unbelievable.xx
It’s difficult to advise so early in the process- I found it took about a fortnight for my headaches to go completely, but I had been going to the hospital every couple of days for blood tests so I knew the inflammation was going down.
Part of me wants to say, give it time, but obviously I would be devastated if I said that and things got worse.
60mg SHOULD be enough to protect sight, and to reduce headaches - but unfortunately I cannot say how long that will take. Steroids themselves can cause blurriness, so that’s bit more difficult to pinpoint.
From past experiences (both me and late hubby) if you ring either GP or A&E they are always going to say - go in to be checked.
I would say if you are dithering, just bite the bullet and go... then you will know - and you may find it’s better organised than you think.
Sorry.. but can I ask something else.After a really bad day of temple pain I notice that the artery blood vessel is now very prominent which was not these before.No change as dad as I notice in the level of blurness in my eyes.Should I worry about this do you think.thank you.xx
Despite what some people think, it’s not the temporal artery that affects sight, but I think you need to get it checked...either ring 111and ask for call back explaining what’s happened so far.....maybe suggesting an increase in dose.
Failing any sensible advice I personally would be going to A&E.
Morning D.L..itceased off a bit last night so I held on.Took my med this morning and a little better but pain in left side still bad ..not as bad..but no change to level of blurness.is it usual to take this long to kick in.. this has already been answer ed probably but not sure what to expect and if I should be looking at hospital or g.p.thank you
Would be sensible to talk to GP first......but I think s/he may recommend you to go to A&E, although may say increase Pred until appointment in Friday.
As I said my headache took about 2 weeks to go completely, but never sure whether that was purely GCA or me adjusting to mono-sightedness.
Also blurriness can be Pred or GCA, so bit difficult to say what is what.
Does local hospital have an emergency eye department- might be worth trying that?
Thank you as that is where i was put on med.I suppose it is only 3rd day and its a little better this morning so I might see what the day brings if yours took so long to settle.Maybe I am looking for it to go too soon.Thanks a million.xx
I think as long as it doesn't get any worse, you may need to be a little more patient.
But obviously you know what to do if you're worried, both GP and hospital would rather you rang than sit at home worrying...and thinking I don't want to be a nuisance! You are NOT a nuisance.
Do you have a number for eye department?
Yes..and thanks again.. you are so good.bless you.xxx
Right now forget about your Osteopenia I had it for many years and my doctors were not worried about it. I take supplements. You need to worry about your vision. You can go blind in one day. My rheumatologist put me on 60 mg the day I saw him. He was so concerned that I could lose my vision. The side effects of prednisone might be bad but it is worth it. If you go blind you will have a lot more problems that will be harder to deal with. I will put you in my prayers.
Thank you so much..I need all prayers and of course you are totally correct as other members have pointed out.Its just that the whole thing has taken over my mind and I can't focus on anything else.I would have been the one doing out advise but receiving it is something totally new.I am trying to get ahead of myself I suppose and get to problems before they actually are there.I take Vit D..4000 u.what do you recommend as you seem to be doing very well.thank you.xx
Hi I’m very new to this and my Gp was rubbish said I didn’t have PMR so I went private and now have had a steroid injection and feeling back to my old self ..it was worth every penny ...good luck I was panicking too just like you , don’t worry we are so lucky to have this forum and these knowledgeable people x
Just a single steroid jab?
At the moment , I have to go back in 6 weeks to see what action will be next, specialist is hoping that a) I’ve had an infection (covid) and the infection has brought on the PMR ! In which case it may go after the steroid jab! If I feel unwell when the steroid jab wears off, then I will have to go on a course of daily steroids! She’s testing for Lupus atm as well 🙄
Ah so ...
Glad you are getting steroids to protect your eyesight.
My top tip for taking steroids is never take them on an empty stomach. I always take mine with 2 tablespoons of live yoghurt. This helps to stop a lot of the stomach side effects (wind and acid in my case). I found I couldn't drink coffee on the higher doses as it made me have a lot of extra acid.
I am a really big lady and yes I have put on weight. However, it's a small price to pay for protecting your eyesight and being out of pain. I try to stick to 70g carb a day which certainly helps. The moon face is starting to go now I am on 5mg. Blood pressure and sugar levels not been affected. So everyone doesn't get all the side effects.
I had PMR not GCA but had to start at 30mg a day to get on top of the inflammation. So you are on double that dose. My top tip is that, as your sleep may well be affected, have yourself a plan for sleepless nights. I had a Netflix watch list and a book list to work through. I also crocheted some bird nests for our local wildlife centre. Be prepared for the fatigue too. Expect to take an afternoon nap. Be very gentle on yourself and avoid getting stressed out. Perhaps gentle yoga, Pilates or meditation to help you relax.
Above all don't beat yourself up and take lots of time for yourself. Recovery is as much in the mind as well as the body. Be easy with yourself xxx
Definitely go to ER... vision could be lost permanently
So sorry you’re feeling so anxious and frightened. As PMRpro said try to just deal with the priorities - the GCA and the 60 mg given. If you really feel after a few days there is no change go to A&E and get them to look at you, regardless of whether you are going on Friday anyway.
When you feel more stable you can then sort out your appointment with a good Rheumatologist. I feel that your previous one was so bad he should be reported but that’s not one of the priorities.
When you’ve then sorted out an appointment with your rheumatologist you can then start to look at anything else that concerns you, one at a time.
Please try to relax in this:- there are many on here who have been through all this and are coming out the other side. You will get through this and you are not alone.
This is a very good trustworthy site with folk who are always around to help and guide you, so know that you can contact the site with any queries, large or small. You can be assured that someone has felt or has experienced what you may feel worried about.
Take care and let us know how you get on. 💐
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