PolywotsitPMRGCAuk team member10 years ago

Hi

I am really worried about you. Do you have a good supply of prednisolone? If you examine your tongue where the tingling is, do you see any change in colour? I am going to ask the medical advisory panel about this if you don't mind. Please can you download the BSR guidelines for the diagnosis and management of GCA from the resources section of our website. pmrgcauk.com, and if necessary take them with you to A&E. Say that you suspect that you may have GCA, that you already have been diagnosed with PMR, and that you are experiencing temple pain and visual disturbance. Maybe it isn't GCA, but you deserve to be taken seriously and for the symptoms to be properly investigated, while keeping you safe. If you are really scared you could self-medicate (but I haven't said that! ;-)). Tomorrow if you are still experiencing these symptoms, please give our helpline a ring 0300111 5090. Good luck

Runrig0110 years ago

Hi Kate, thanks for the prompt response, Im sorry if I didnt make myself clear. I dont have blurred or double vision. I had a small haemorrhage behind eye which was asymptomatic. Today I just have blood shot eyes, but no problem seeing. I am led to believe these haemorrhages are common when on steroids. I am already familiar with the guidelines and mentioned them to GP. I also informed him of the international survey which quotes 26% of people under 50 have normal bloods. I will certainly call tomorrow if still experiencing these symptoms.

Thanks, runrig

DorsetLadyPMRGCAuk volunteer10 years ago

runrig,

When you went to A&E did you see an ophthalmologist? If not, then please go again and see one this time. Don't take risks with your eyesight. From one who knows. Dorset Lady. Good luck.

Runrig0110 years ago

Im not sure if he was an opthalmologist or not. He did place me in a darkened room and used toe scope to look into my eyes. He also checked my field of vision, which was fine. He could only see a small bleed behind the eye and said it was not related to my PMR.

Kate when looking at tongue it seems normal on the surface, My husband thinks if 3 doctors have all said I don't have GCA then I should accept it, despite the fact none have taken my concerns seriously, or offered an explanation for all these symptoms Getting to the point I cant discuss this at home, so appreciate having this forum to raise my concerns, without being made to feel a fool.

PolywotsitPMRGCAuk team member10 years ago

Well, I have raised this (no name, no pack drill) with a member of our Medical Advisory Panel who is an authority on GCA. I quoted your blog. The advice is that you should seek specialist advice from a rheumatologist, and quickly. To quote 'It may not be GCA or PMR – could be quite a different condition needing further investigations including scans '.

Let's suppose it isn't GCA but you still have some rather concerning head symptoms. Never feel a fool. (Oh if only, I know we all do sometimes).

Incidentally, a research rheumy we are in touch with is shortly going to embark on a research study of the 'shadow GCA' symptoms that PMR patients often report experiencing. She has had approval for the funding - so no, we're not making it up.

Runrig0110 years ago

Thanks Kate for going to that trouble, I really do appreciate it. My dilemma is when I tried contacting my Rheumy today for advice I was told she had been admitted to hospital and was unavailable. They suggested GP as I see her through choose and book at a private hospital, so she has no registrars or assistants at her clinc. Will mention what you said to GP. Had MRI scan of whole of spine when I first seen her. Which showed 3 slipped discs, 1 in neck and 2 lumbar spines and a bit of wear and tear. Lots of bloods over. 6 months all showed nil. Thanks again

Runrig

CelticPMRGCAuk volunteer10 years ago

Runrig

Do you have another A&E not too far away that you could go to? You need someone to take your symptoms seriously and, if necessary, treat you accordingly.

It isn't 'just' GCA that needs ruling out here - a couple of weeks ago, I advised someone with PMR who had a couple of suspicious GCA-like symptoms to go straight to A&E. He did and GCA was ruled out but he was asked to return the following day for a scan which revealed that he'd had a TIA with evidence of previous ones.

Good luck tomorrow Runrig.

Runrig0110 years ago

Thanks Celtic,

I'm afraid i don't have another A+E near me. I am a nurse and familiar with TIAs but cannot relate my symptoms to them. My main worry is the tongue tingling and the jaw cramps. The temporal headache pain is bearable all be it constant. It was bad this morning when I reduced Pred to 8mgs, but took an extra 2mgs by lunch so is back to where it was. I h ave to say the Pred has done wonders for the muscle pains in neck, shoulder, hips and buttocks. Even reducing the dose did not exacerbate the muscle pains too much, just the pains from the neck up :-?

Hidden10 years ago

Hi runrig01,

I too have had strange new episodes of pain, swelling and blurred vision on dropping in similar doses to you. These have all been in my head, jaw and on the last occassion in my line of sight. For me these occurances happen between 7.5mg and 7mg.

I have no doubt that these episodes were caused by inflammation in the head. I had no pain in my eyes, but there was interference with my vision and flickering lights - I don't think I have ever moved so fast in my life - up went the pred and also down went 2 ibuprofen at the same time. 20 minutes later my eyes were back to normal.

Today, I feel fine and am back at 7.5mg again. I see my optician tommorrow, but, as my eyesight is back to normal, I wonder if she will see anything unusual.

My approach to warding off GCA is this - keep a good supply of pred at home and if things look really dicey then drop a big dose and wait - not long - 30mg and above will knock it for six in a few hours. These bigger doses will be needed if you are in a lot of pain, but they are easy to reduce once things have settled.

I only upped the dose by 1mg plus 400mg of ibuprofen and it did the trick.

I really dread going down in the dose again, but if I get the same side effects then I will take extra meds and then go to A&E.

What else can I say? This scarey illness is a hard one to fight.

Pats.

Runrig01 in reply to Hidden10 years ago

Hi Pats,

Sorry to hear you are suffering similar problems. Good luck with your visit to opticians today, Do let me know how you get on. I had my vision checked 2.5 month ago when i had blurriness and all was fine behind the eyes, just needed stronger prescription glasses. I have thought about taking Aspirin 75mgs whilst I wait for someone to find out what is causing this, as it is supposed to lower the risk of loss of vision in GCA patients. So if patients on high dose Pred can take aspirin I guess I'd be fine. Today just back to nagging ache in Temples, and mild achiness in upper jaw. Will continue on 9mgs for now, have plenty Pred at home if I get worsening of symptoms may increase dose a little myself. Good luck again, and I really do appreciate all the support.

Runrig

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Hidden in reply to Runrig0110 years ago

Hi Runrig,

Had an interesting visit with my optician this afternoon. After a complete examination of my eyes she said that they were A1 with no deterioration in eye sight, and health of eyes is good - macula and optic nerve perfect.

I explained about the probs I have had with head pains etc since trying to drop from 7.5mg to 7 mg of pred, especially the partial loss of vision and 'spangley lights' in both eyes, but with no pain. She said she was in no doubt that the last episode was due to a migraine as I had spent too long on the computer without a break. (this is the first migraine I have ever had).

She suggested that in future, if I have any of the probs again, including head aches, which have never been very severe, that I use ibuprofen alone and see what happens rather than keep upping the pred. To try ibuprofen for a day, at full dose if neccessary.

I will follow her advice, but will not tolerate any 'nasties' for longer than a day without upping the pred and seeking help.

Pats.

Ps---- Do you suffer from diabetes? The optician explained how this condition can damage the blood vessels in the retina causing bleeding and scarring and, therefore, lead to problems with sight. I asked her to explain as I know many people develope diabetes caused by pred.

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Runrig01 in reply to Hidden10 years ago

Hi Pats,

I have written new blog about A&E visit today. I was advised to continue on current dose of Pred, as markers are never normal with GCA. He did say I could use aspirin to help protect eyes. I am not diabetic, but have been told steroids cause bleeding in eye vessels. I just wish everyone was singing from same sheet, the experts say it is possible to have normal bloods with GCA the A&E drs say it is not. I have to trust they are right and sight is not at risk. He also said I could take occasional Brufen, took some when I got home, will try and rest now. Fingers crossed our next reductions are trouble free cheers runrig

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Hidden in reply to Runrig0110 years ago

Hi Runrig,

I wish I could think of something to help, but after looking at the symptoms of GCA, I can see how your doctors are reluctant to diagnose it. That doesn't help at all does it?

GCA does cause a change in the way the blood vessels look in the eyes, apparently, and yours obviously were causing no concern to the opthalmologist who examined them.

If I was having these problems and they had started after a drop in steroids, then I think I would just up the pred again. Perhaps some ibuprofen as well. If that did no good then I would demand to see a specialist.

You can't go on like this can you?

Pats

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rosabud in reply to Hidden10 years ago

I have Type 2 Diabetes and can honestly say that before I was diagnosed with PMR I was starting to have blurry vision, but one I had the correct diagnosis and was on 45mg of Pred a day for a week things started to get better. I do however find that my eyes get tired of an evening when trying to watch telly, but that may be because I am still adjusting to the condition and that I work on a Computer all day. I am due to have my Diabetic Eye Check in October and will keep you posted with this as currently I have perfect vision as I had my laser surgery on my eyes back in 2008 before I was diagnosed with Diabetes. I did also suffer from very bad migraines before I had this surgery, but have only possibly had 3 migraines since then. I hope that the nasties get better for you. I am currently on 15mg per day of pred and at my last blood test was told that my symptoms were improving, but I was only diagnosed 2-3 weeks ago so I may have a long way to go but trying to stay positive. I have been having green tea which I have found has helped whether this is just a coincidence on not who knows and drinking plenty of water as I was starting to have headaches every day, but these were just headaches and definitely not migraines.

Take Care and stay positive this forum is fantastic and it is great to know that you are not alone with this unfortunate pain in the arse condition that appears for appears for absolutely no reason or proven reason at the moment.

Stay well

x

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hege10 years ago

I am also worried about you....do persist and go to an A and E.

I had atypical PMR and GCA and my doctor thought that I was fine but I knew something was very wrong,I had face pains and felt wretched.

I went to a Hospital,they immediately put me on 50mg of Prednisolone and ordered a biopsy a few days later........which was positive.

You must get medical attention.

Good Luck,

Hege

Hidden10 years ago

runrig01

There must be another A&E near wherever you are and you should go immediately and ask to see the Consultant in Charge and insist on seeing an Opthamologist as well. Take the BSR Guidelines with you.

The short answer to your problem is this. Once you lose partial or total vision it is gone, there is no getting it back. No medic has the right to dismiss the symptoms you are experiencing.

If we are wrong, we are wrong, but your sight is not then as risk and losing sight is too big a risk to take.

Go and Go now.

confettibridal10 years ago

Sounds typical GCA - if it was happening to me I would takea higher dose of steroids until it settled down demand to see a consultant. Better to have to deal with steroid reduction than lose your sight.

Look at PMRGCAuk charity home website.

Good luck.

confettibridal10 years ago

Oops - see you have already heard from Kate Gilbert - bless her.

Izzy5110 years ago

Hi, I was diagnosed with Temporal Arteritis six and a half years ago. I went to my doctor and more or less had to ask for my Esr to be taken. I had not been diagnosed with PMR then , but unknowingly had all the symptoms. He did the esr at the surgery and said it was 35 and that I had PMR, but that it wasnt high enough for TA, so to go back 48 hours later, it had gone up to 65 and I was immediately put on 60mg of prednisolone. in some cases , which is rare it doesnt show up high in esr blood tests. If you are not happy go to a & E explain your symptoms and tell them you have PMR. usualy they wil do a blood test whilst you wait. Apparently a lot of doctors miss diagnosing TA. If I hadnt been insistent and my PMR , that i did not know i had , hadnt flared at the same time, it could have taken me much longer to get treatment.

Good luck

Izzy51

Runrig0110 years ago

Hi Izzy,

Since this blog started I have been to A&E twice. On the first occasion they checked bloods ESR was 12 and dismissed that the symptoms could be GCA. I had jaw cramping, tingling tongue, temple pains and eyes were bloodshot. Dismissed and to to continue 9mg Prednisolone. My GP increased my Pred to 20mgs and things improved for 4 days then temple pain returned with a vengeance. He sent me back to A & E where they increased Pred to 30mgs to tide me over till I see rheumy. I see her on Wed, I still have temple pain, (although not as severe as when onl ower doses) and jaw cramping when chewing. The tongue tingling has stopped and now just feel like tip of tongue is burnt. My energy levels have plummeted to how I felt when I first had polymyalgia symptoms. I am getting anxious as I am due to fly to Turkey in less than 3 weeks, GP says if these symptoms continue I will not be able to fly. I have now given 3 A&E Drs and 3 GPs plenty opportunity to investigate, but still remain at a loss of what is causing all this, it is now approaching 8 weeks. I pray that my Rheumy will have answers

Hidden in reply to Runrig0110 years ago

Hi runrig,

I hoped you would be on the mend, but see that you're still having problems and your impending holiday is worrying you and, therefore, your symptoms will feel worse.

I do hope that your rheumy 'just goes for it' and ups the dose to a real 'belter'. That's the only way you and your doctors will know. If it is GCA, then once it's under control, it won't be long before you're down to the medium doses.

Having your life put on hold like this must be miserable for you. I hope you see your specialist soon.

Pats.

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Runrig0110 years ago

Thanks Pats, due to see her this Wednesday, counting the days. For the first time in 29 years I have had to get a sick certificate as the burning pain in temples and jaw worsens with activity. I also have no energy now,feels like the early days of Polymyalgia, drained all the time. The 30mgs dose has lessened the pain, and stopped the horrendous tongue problem, so at least I am getting sleep now. Will update blog once I have seen Rheumy. Finding a heated wheat bag helps the temple pain for a little while. Thanks for all the support you have given, it really is appreciated.

Runrig

misaryk7 years ago

Hi, I am new to all this myself and in the same boat have a lot of the symptoms, but the famous ESR and CRP blood test are apparently normal, so all the symptoms and temple and eye pain is ignored I hope you get some answers quick. I am 50 years old and was told that I was too young to have CGA. Which from what I have seen here is absolutely not true. A couple people from here suggested to me if my symptoms continue and or get any worse to go to the ER which I think is a good idea. I have been on predisone for the last 12 days now. Take it easy

Runrig01 in reply to misaryk7 years ago

This is an old post from 3 years ago, I had lots of tests come back normal, but symptoms continued for 2 yr. About 18 month ago I emailed one of the UKs top specialists in GCA. She agreed I do have. My local Rheumy also sent me to see thee Prof who also agreed it is GCA. Unfortunately my local Rheumy discounted both of the experts opinion, so I now travel 300 miles to see a specialist in Leeds, and feel I'm in safe hands. My gp thankfully has always been supportive.

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daworm5 years ago

I am astounded by the many mis-diagnoses I read about on here..my already weak faith in modern medicine isn't helped by this..I would never sit by while one dr took too long to decipher what was wrong...unfortunately getting referrals and seeing specialists takes either money or real good insurance, which many people do t have...sad...go see another dr soon..