I wrote a few days ago about the problems I was experiencing with ringing in one ear, dizziness and severe headache. I then started double vision and ended up by visiting A&E. Unfortunately, this wasn't of much help so I managed to get an appointment with my optician the following day. In the meantime, I found out that the "urgent" referral to rheumatology made by my doctor was not going to take place until OCTOBER!!
Fast forward to today - headache and ringing in ear still bad but, as I'd been assured by both the A@E doctor and the optician that there was no evidence of GCA, I simply rang my doctor's surgery this morning to ask for a repeat prescription of Pred and to ask for the results of both my Dexa scan and my blood tests. I was assured all results were OK so the doctor decided just to leave me for a month on 15mg Pred. Then, at lunch time, I had a call from the hospital to say they had an appointment for me at 4pm TODAY! I saw a rheumatologist who agreed my bone scan was excellent but said my CRP levels were still raised. Apparently, before the onset of PMR, my level was 3.1, on diagnosis it was 128 and it now stands at 28 which she feels is too high after 2 months on 15mg Pred. So, she has doubled it to 30mg with another blood test and appointment with her in 4 weeks. So, I'm now feeling totally exhausted with all the information I've had to take on board over this past week and just hope that things settle down soon. This illness is exhausting in more ways than one........
Jan
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Janann25
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Hi Janann, I am surprised the rheumie raised your pred dose so high if GCA was not suspected. Did you have any bad PMR symptoms? I started at CRP of 123 and after two months it was 37 and after three months 20. I don't think I passed the so what test with my rheumie!
I think she was worried by my symptoms of headache/ringing in my left ear and double vision and was probably just trying to make sure she'd covered all eventualities. Obviously, I don't know enough about this illness to be able to make an informed decision myself so I have to be guided by her. The more I learn from this forum, the more I realise that each doctor seems to have his or her own opinions on this illness - deep joy!!
Thank goodness you persisted Janann. Stressful as it all was they are at least taking you seriously and the 30 mgs will be a just in case dose. I bet you don't even realise what a credible expert you have become. I really hope you start to feel better. Take care!
Once gain far from 'ideal' treatment -'they' obviously couldn't decide themselves what to do with you and the end result is they say one thing and do another !! Anyway I think it is 'good' you are on the 30 mg at least although it is not really a diagnosed/suspected GCA level dose which it is generally agreed should initially be around 40 mg if there are no vision problems and 60mg or more if there are . So keep an 'eye' on things and don't hesitate to try to see your rheumy earlier especially if you have any ongoing worrying vision problems - I would anyway !
Like you I am relatively new to both this condition & this site, I agree that doctors seem to all have a different take on this condition, the one before I have now, just went by blood test, which did not according to her give the diagnoses of PMR. So as nice as she was to me, it was. Case of the EVIDENCE had to be in the blood work done. Or it was NOT PMR. The GP I have been seeing these last 3 weeks, actually said she knew what was worn with me from my symptoms after examining parts of my body. She said she did not want to wait for the results of the blood she took, So said she was going to treat me as a patient with PMR.
Am she started me on 15mg of PRED daily. After a couple of hours It was as if someone lifted that truck off my body that I had been carrying around for weeks...I even woke the next morning after just one days dose of steroids with NO headache ,that was the first time I was free of a headache in MONTHS. I did have two days where every pain came back & almost floored me.
But, I took some advice from this forum, & upped my 15mg to 20mg on day 2 of this vicious attack on my body. And once again writhing a few hours, the pain disappeared again.
I did tell my GP what I did yesterday, & she did say, she was not keen on me upping my dosage ut her knowing, so I told her IF it ever happens again & I now KNOW that a slight increase will relieve all that pan. I will call the surgery, ask to speak to her, & if she is NOT a available I shall let the triage nurse know what I intend to do.
I have been doing ok! Since that last upping of my dosage, It was just the one day, & I have been back on my 15mg since, & coping very well now. Long may it last. Now if I can just get OFF to sleep and then STAY a sleep. I would maybe not feel so fatigued all day.
I also have to make an appointment to see an optician, which I hope to do today.
I hope that you are pain free, & rid of those headaches Jan.
Thank you Kate for your reply. Unfortunately, things don't seem to be going to plan. I was woken at 3.30 this morning with a REALLY bad headache and even a dose of co-codemol didn't help. So, at 4.30 I took my new dose of 30mg Pred and managed to doze for a while. It's now 7.20 and the pain has eased but not gone. Of course, because I already have double vision, I can't tell whether my eyesight has been affected or not. All I can do at the moment is wait until this afternoon when I have the temporary "fix" put onto my glasses and then see what exactly is happening to my vision. I now just feel so weary and want to sleep and pretend none of this is happening.
I hear you on both headache & sleep, I am not sure now whether it is lack of sleep that is causing my headache or the headache which is causing lack of sleep. It really is a bummer of a condition.
Hopefully I will manage an appoint,ent today with optition. And we can get to the bottom of this head of mines.. 7.30am here now, & I am going to,lie down & see if I can drop off for at least an hour...
That sounds better - there may be no sign of GCA in your eyes - but there are definitely signs of cranial arteritis of some sort in the form of headache, tinnitus and double vision.
Although 40mg is a more usual starting dose for patients with no visual symptoms, there are many rheumies who feel that 30mg is enough where there are no severe symptoms.
Having read all the way down the thread - if that headache doesn't resolve this morning or if it reappears tomorrow please ring the rheumatology department and ask to speak to the doctor you saw, urgently.
As I said somewhere else - I do wish GPs learnt how to deal with someone they want seen quickly. Because by its nature rheumatology doesn't really have medical emergencies, the GPs must learn that an urgent (i.e. expidited) appointment is NOT what you need, it is an EMERGENCY. And when a patient's symptoms don't go quickly with 15mg, try a bit higher.
Thank you again for your advice. You have actually confirmed what I've been thinking, that it's more likely to be cranial problems. The headache is still there - not quite as bad as at 3.30am but still worrying me. And it's a catch 22 situation - I realise my local doctor can't help me but I know from experience when my late husband was so ill, it's just impossible to contact a cinsultant on the same day. I'm actually wondering whether to increase my dose to 60mg to try to protect me but I don't think it would be well received by the doctor or consultant. As I say, it's a catch 22 situation,
If you go to A&E they can contact a consultant at any time of the day or night - there is always one at the end of a phone even if they are not in the hospital itself. You have a history to show them at triage so they take you seriously - especially if you go to A&E at the hospital where you see the rheumy. And the senior A&E staff are generally very good - don't be fobbed off with the juniors or a GP working in A&E, ask to speak to the big cheese. Even the paramedics in Yorkshire are taught about GCA so they fast-track any patient with appropriate symptoms in A&E.
Lol lol you have thrown another word into the equation that I have not heard mentioned in regard to this condition before "cranial" Arteritis. Google here I come (AGAIN) you would make a great GP or specialist anyway in PMR & GCA..
Oops, sorry: cranial just means in the head. Arteritis is inflamed arteries - GCA is just one sort of vasculitis (inflammation in larger blood vessels, both arteries and veins). GCA can happen in arteries in all sorts of places, in the head and in the trunk in particular.
It sure does PMRpro, it really is all muddle & fuddle thing. No wonder people have lost their sight, it is all so confusing as to what is actually going on. But again THANKS for the info..
I agree about medics needing to be aware, I got the steroid card from my GP, but I have also bought a medic bracelet, especially for when I go on holiday, if this were just a few weeks or even months thing, I would not have bothered, but a year, two years, and for many much longer. I think it is only right that we take responsibility for ourselves, as well as expect our medical services to treat us properly.
Couldn't you go to the Emergency department? Here in Spain, the system makes it difficult to see a consultant without a long wait, too, but if you have something that is urgent, you go to the ER during the day on a weekday, the emergency doctor will consult the Reumatoligist on the spot.
Thank you both for your replies. I have phoned the rheumatology department where I saw the consultant yesterday but it's an answerphone with a request to leave a message and, due to staff shortages, they hope to get back within 24 to 48 houra!!! I now know that I see my optician for the temporary lens fix at 3pm so will decide then whether to go to A&E. I'll keep in touch.
OK, here's the latest. I actually got a phone call back from the hospital just before I left to go to the optician. The consultant wants me to go up to 40mg - she doesn't want to go too high just yet because I'm only 5' and don't weigh a lot. She's going to speak with a colleague and will get back to me when she has spoken with him. So, I think I'll take the extra 10mg when I go to bed - in the hope that it will help with the early morning terrible headache and take the rest in the morning. In the meantime, I saw the optician and had the new patch put on my left lens and, great celebration, the double vision has virtually gone! It will apparently take a few weeks for my eye muscles to adjust but I totally understand why - I'm just so pleased that the temporary fix is working for me. I don't know whether I mentioned it before but the optician is of the opinion that the eye muscles can also be affected by PMR. No idea whether that's true but very interesting all the same. So again I play the waiting game and hope that things will settle down.
Without sounding like a broken record, THANK YOU again for all the help and advice on this forum. Without you all, I don't know what I would have done.
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