I am a 49 year female yet unable to get out of bed or get dressed due to pain and fatigue/exhaustion. I have seen various GPs, Endos, two ENTs, an Eye specialist and a local Rheumatologist but not yet received a definitive diagnosis or successful treatment. I am very concerned that my vision and health has worsened over the last few weeks and that my current (private) Rheumatologist is not helpful at all. He referred to me as an “Interesting case” but unable to provide a diagnosis.
In summary, symptoms include; Blurred vision within last 6 weeks, Pain in and around eyes within last 6 weeks, Dry eyes within last 4 weeks, Jaw ache/pain. Feeling worse when eating, Tinnitus (severe and continuous for last 4 weeks), Pain at back of both ears, Chronic Fatigue - Bed ridden for last 6 weeks (and not left the house accept for hospital visits), Chronic pain in back of head >3 years, Fever at night time, Hotness around front and back of neck and forehead, Breathlessness, Insomnia, Chronic dry clough >3 years, No appetite for last 6 weeks – not able to eat more than a can of soup per day, Rapid Loss of weight >14 lbs possibly a lot more, High pulse rate up to 140 bpm at rest (now reduced on Bisoprolol).
I also have two other autoimmune illnesses; Vitiligo (from 5 years of age) and Hashimoto’s Thyroiditis (from 40 years of age). Over the last 4-6 weeks my remaining skin pigmentation has all but gone. The Rheumatologist said that the anti-body test was negative!
I was originally diagnosed with Giant Cell Arteritis and was initially prescribed 60 mg Prednisolone for 7 days followed by 40mg for 7 further days. I had a Temporal Artery Biopsy however this was negative (not surprising after 2 weeks on Prednisolone!).
The Rheumatologist is now saying it is not Giant Cell Arteritis due to my age and that he would have treated me if I was older!! He is now aggressively reducing the Prednisolone by 10mg every 2 days which I am concerned about. I also had an MRI in December and now awaiting the results. I was taken to the local A&E on two occasions over Christmas with breathing difficulties due to the rapid withdrawal. There were no Rheumatologist’s available so I was sent home even though I had vision problems.
I am now on 20mg Prednisolone only and seriously concerned as I’m still waiting for a referral to another Rheumatologist.
I have been shocked at the lack of awareness in the medical profession through my own personal experience and from those on this forum.
I wish everyone well.
Written by
J33PCX
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Firstly, a negative temporal artery biopsy does not mean that you definitely don't have GCA as the large cells they are looking for can escape the tiny portion of artery removed. As for the statement " it is not Giant Cell Arteritis due to my age", that can be taken with a pinch of salt - although not common, it has been found in even younger people.
The main question that comes to mind is whether you had any resolution in your symptoms within a short time of being put on 60mg of Prednisolone? Also, did you have ESR and CRP blood tests that showed raised markers of inflammation at the time of the original diagnosis?
Whereabouts in the country are you - it may be possible to recommend a good rheumatologist?
CRP was negative. Not sure on ESR but assume negative. The Prednisolone helped a lot with almost all the pains but the fatigue and weakness remained. Rheumatologist said that the Prednisolone wasn't doing any good and he would only treat me if I was older. Located in East Anglia.
Oh well - that answers a couple of questions in one fell swoop - you are not the only person on the forums who is struggling in East Anglia. Or the only under 50.
One in five patients with GCA or PMR do not have raised ESR/CRP and it is more likely in younger patients. GCA is unusual in younger patients - but there are a LOT of cases in the literature in under 50s. You have all the signs and the pred helped.
The pred helped with almost all of the pains - but it wasn't doing any good? How on earth did he work that out? Pred does nothing for the fatigue and weakness - they are part of the autoimmune part of GCA and pred doesn't change it.
You are already with a private rheumy - are you happy to travel - say to the other side of London?
Don't worry about it but you may also find this link useful to hand to your rheumy, and your gP as a start since you will be able to see him quickly:
If a 37-year old man can have had GCA then a 49 year old woman certainly can - the BSR guidelines say "over 50" and any doctor who thinks that a disease takes notice of your birthday before striking needs their head read as my mother used to say! If you turn up on your 50th birthday with the symptoms what will he say I wonder?
It is very sad to read about Mark Ivin and his suffering. Why are the medics not better trained on these conditions?
It is news to me that Prednisolone doesn't help the fatigue and weakness. My Rheumatologist said that I would be "on a high!". He dismissed the fact that the pain had almost gone within a week and wanted me off Prednisolone.
Do you have any suggestions for the fatigue?
I now have a new specialist and an appointment booked for next week.
Yes, you MIGHT be on a high, it is one of the side effects but it is one that doesn't happen for everyone. I never got the pred rush that leads people to do all their cleaning and buzz like a hive of bees!
For the fatigue you need to learn your limits and stick to them and pace yourself. Read this:
I was going to say that if a rheumatologist doesn't know that pred only manages the other symptoms but not the fatigue there isn't a lot of hope - but it is a very common misapprehension on their part. I have no idea why. It came as a surprise to the rheumatologists on a research group that no, pred helps a lot of the problems but by no means all. There are rheumies who bother to listen to their patients and who read about our experiences but they would learn an awful lot if they would deign to listen to the people with the t-shirt. But to stop your pred just because you were still fatigued but everything else was better just defies belief!
Has the pain come back at 20mg or is it still holding it?
Pain has got worse again now that I have been reduced to 20mg especially Jaw pain. Also vision is becoming more blurred and I'm really scared. Eye specialist said nothing was amiss!
J33PCX, steroids can cause some blurring of vision but as you say you are finding your vision is becoming more blurred even though you have reduced to 20mg, if it was me I would take myself straight off to A&E and not budge from there until they come up with an answer for you. Your rheumatologist needs to read the answers on here from other patients diagnosed under the age of 50.
Please go back to your GP asap or, if that isn't an option, to A&E and be insistent whoever you see. Emphasise the return of pain with the lower dose and the visual effects. Is there anything else?
I'm sure there wasn't anything the eye specialist could see, it does take a fair bit of mild ischaemia to show up on where the optic nerve joins the retina, but the real problem comes if the artery supplying the optic nerve becomes totally blocked and the blood supply is stopped - like a heart attack.
Your best bet immediately is your GP who can provide you with enough pred to keep going at 30mg until you can find a better rheumy. Celtic mentioned her rheumy - that is who I was meaning, he does private work and I'd trust him implicitly,
Not sure - is the Norfolk and Norwich any better and possible? Or Addenbrookes who have a superb vasculitis unit.
J33PCX, yes an excellent one, the lead rheumatologist at St Peter's Hospital, Chertsey, Surrey. If they're 'looking in' here at the moment, I know there are a couple of other people who will thoroughly recommend him. If you're interested, perhaps you can send me a personal message and I'll reply with his contact details.
Unfortunately, some medics will rule out GCA/PMR just because a patient has normal blood markers - around 1 in 5 people diagnosed never have raised markers of inflammation showing in their blood tests.
I don't quite understand the rheumatologist saying that the "Prednisolone wasn't doing any good" whereas you say that it "helped a lot with almost all the pains". Can you elaborate further?
Many of the symptoms you mention are classic of GCA, particularly the jaw and head pain, night fever, rapid loss of weight, and these were all among my symptoms at diagnosis - it was these symptoms that were stopped in their tracks by the first 40mg dose of Prednisolone. However the fatigue and weakness you mention takes a lot longer to get under control.
There is a PMR/GCA support group in East Anglia and if you get in touch I'm sure they will be able to point you in the direction of a good rheumatologist in your area. You will find contact details on the following link:
Depending on whereabouts you are in East Anglia, there is also a support group in Cambridge: Cambridge@pmrgca.uk.com. I have a most wonderful rheumatologist with a special interest in PMR/GCA but you may feel that the hospital in Chertsey, Surrey, is a little too far for you.
James Paget is our closest hospital too. I have been there twice over Christmas but they could not help and they sent me home! You sound like you have got a supportive Rheumatologist helping you.
This all sounds awful. And the not knowing making things even worse.
I wonder if you have just one thing going on here or maybe you have two or more conditions -- each making the other worse. I was wondering if anyone has tested you for Lyme Disease for example?
The other thought I had is -- and it is a private place -- but very good at solving knotty problems-- is to get yourself to The Breakspear Hospital in Hemel Hempstead. They have a website and I think it is easier if you read about them there.
They seem to me to look at a whole person -- and test for everything -- and the speakable and unspeakable bits of a person go off to America where there is much more exquisite testing. It is a last chance saloon for many people but I have sent several people there with fantastic results.
Hope you can get some answers and some relief soon. Judi
I can't possibly answer any of your questions, but my heart goes out to you. Be assured there will be many of us on this site who will be thinking of you and hoping that you get some answers soon. Keep your chin up and don't put up with ignoring your very justified concerns.
As to pred making one euphoric: yes, that happened to me initially. As well as the lack of pain and stiffness, or may be as a result of that, I felt elated and on top of the world. Reducing pred soon put a stop to that and it's been up and down for the past four years. Once when I went to my GP, she had a trainee and asked me to explain PMR to her which I did! Wouldn't it be great if all medics had the humility to ask US to talk to them about our experiences which differ considerably from person to person and certainly don't conform to whatever it is their textbooks tell them.
I just want you to know that I feel for you and that we will all be waiting for you to post better news please take the advice from this site and hopefully get some results. Good luck.
You certainly can get GCA under 50. I was 46 when I developed PMR. It took 14 months to diagnose because of my age. 3 months after starting steroids I developed burning temples, tongue pain and jaw pain when chewing. I also developed pulsatile tinnitus in my left ear. 2 local Rheumys kept dismissing my concerns as biopsy was negative (it was taken after being on Pred 10 months). I ended up asking my GP to refer me to an expert in GCA based in Leeds. They confirmed I have GCA. Despite living in Kent I now have my Rheumy in Leeds, who manages my pmr and GCA, my bloods have always been normal. My local Rheumy also sent me to SOUTHEND for opinion, who also agreed GCA. Despite 2 experts saying yes, he disagreed so I refused to continue seeing him. Good luck keep pushing. I had GCA symptoms for 2 yrs before I was diagnosed 😏
Your doctor is not a real doctor. You can go blind at any time. Get the prednisone into you at the right dose quickly. There is not much more to say. Get help and who can you report him to? He is probably hurting other patients as well. Sorry but this makes me angry. Good luck and keep us informed.
Thank you for your advice and taking the time to reply. Really appreciate it. My GP just phoned me and he has received a letter from rheumatology Dr today stating a rapid withdrawal of prednisolone tomorrow 15mg then down to 10mg two days later etc.... My GP told me yesterday on the phone to stay on 20mg until I can get a second opinion he would not increase because the optician's and blood test came back normal and my age it only effects the older generation, but all my symptoms the blurred eyes and jaw pain fatigue no apitite etc he wouldn't comment! Will 20mg stop me loosing my eyesight or my eyes getting worse he would not comment! Now today on the phone he also wants me to rapidly withdraw from predisolone! I'm stuck in bed feeling so Ill worried and scared. I don't want to loose my eyesight I would be able to cope a lot better if my eyes were not being put at risk! struggle to get to any appointments because of the fatigue not sure if that's down to the illness or prednisolone withdrawal or both. My husband has been dressing me and taking me to all my appointments. I now have an appointment to see Dr Richard Watts next week. Hopefully this will answer my questions and get me on the right treatment.
Well I will comment - no, 20mg is unlikely to prevent loss of vision if the appropriate artery is affected. If you have visual symptoms they usually start with at least 60mg to achieve as rapid a reduction in inflammation as possible. If you have more visual symptoms of any sort - go straight to A&E and make it very clear how ill you are, in fact, if you are that bad dial 999. Make it very clear you have visual symptoms - they can be signs of a stroke so they will take it seriously and treat it as the emergency it is.
Can your husband contact Dr Watts and explain how ill you are? Have you shown your GP the article from S Wales I gave you the link for? Have you another GP you can see? Or OutOfhours?
"Older generation" my foot - the youngest biopsy-proven GCA patient was 17 years old! It is often not diagnosed in younger patients for the pure and simple reason they aren't looking for it and when they DO see it they are so far in denial they don't see the wood for the trees.
Update. I had my MRI report back today. Apparently the MRI shows a "Subtle enhancement of the left interorbital optic nerve but without thickening is nonspecific and may reflect an optic neuritis". Easy for them to say!
On further research this appears to mean inflammation of the optic nerve. Rather than Vasculitis which, as you will all know, is inflammation of the arteries. My Rheumatologist said that he can't deal with this type of inflammation which isn't GCA.
Not unsurprisingly I have been to A&E today. A&E consultant says that my complex set of symptoms aren't consistent with optic neuritis ie fatigue, Jaw pain, Tinnitus, apitite etc. I have to go back on Friday to have this all confirmed.
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