Advice needed please
Posted , 7 users are following.
Hi all, I was recently diagnosed by my GP with GCA, but having read up on the symptoms of both GCA and PMR, I believe I have been suffering with one or both for at least the last 5 years.
I had been putting the fatigue down to working full time shifts in a stressful environment, and the pain down to lack of exercise and being overweight.
Six weeks ago, I suffered an attack of vertigo, which led me to the GP surgery and ultimately to the diagnosis, based on high levels of inflammation in a blood test.
I started on 40mg of prednisolone straight away, and felt so much better very quickly. I had energy to spare and was practically pain free for the first time in as long as I could remember. I still had pain in my head, low grade headache, coupled with shooting pains and very tender areas, especially in the crown area.
My GP reduced my dose of Pred from 40 to 30mg after about 10 days, and I felt unwell for a couple of days but picked up again. My symptoms were still there, though. I was reduced to 20g a week later, and had the same reaction - a couple of days of feeling unwell but then levelling off but with the same symptoms. My GP then referred me to the local hospital for a second opinion. I was assessed by a Dr in the Rapid Assessment Unit, who told me she agreed with the diagnosis, but put the ball back in the GP’s court and advised him to refer me for a biopsy, which he did. I also had an MRI on my brain.
The MRI was “normal” and I have just been advised that the biopsy showed no sign of current inflammation or of any previous inflammation.
At my request, my Dr increased my dose of Pred back to 40mg a week ago. I didn’t have the expected relief from the increased dose, although I did feel better, up until I had the biopsy, which has clouded the issue, I think, due to the pain and soreness caused by it.
My GP has now advised me to reduce the Pred by 5mg every few days, as he doesn’t believe it is doing me any good at all.
He thinks I may have some kind of Neuralgia, which can sometimes be unexplained.
I do have an appointment with a Rheumatologist next week - my GP is hoping that he will take on the challenge of my case.
I don’t know what to think - I’m almost disappointed that the diagnosis may be wrong, as I thought it would be the start of a recovery to normal life, but also relieved that it may not be something serious.
If you have read this far, thank you very much. I needed to put this down in writing for clarity.
1 like, 18 replies
Anhaga helen18399
Posted
I do know that 40 mg is at the low end for treatment of GCA so it is good you had a positive response to it. A pity the biopsy wasn't done sooner however as you know being on the steroids for couple of weeks would have reduced any inflammation so much the biopsy would be unlikely to show anything. Even if done earlier a negative biopsy wouldn't mean you don't have GCA, just that they didn't find the large cells they were looking for. After several weeks on prednisone you should not have been showing signs of inflammation. It doesn't mean you never had inflammation, only that pred was doing what it was supposed to. Unfortunately I think your dose was probably lowered too soon, and then too quickly, which is why you are having problems now, even after going back up. Can you stay at the current dose until you see the rheumatologist, at least that will stop one bounce of the yoyo!
I tried to google if prednisone is useful in treating neuralgia pain and it didn't come up as a treatment of choice.
Anhaga helen18399
Posted
I should have said how sorry I am that you have had these symptoms for so long. I do hope your appointment with the rheumatologist is fruitful. There is up to date information about GCA and PMR on the introductory page of this community so you should be able to ask good questions and get satisfactory answers.
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
helen18399 Anhaga
Posted
I am hoping for some clarity from the Rheumatologist, so fingers crossed.
Anhaga helen18399
Posted
helen18399 Anhaga
Posted
Thanks again for your response to my tale of woe.
jennybshaw helen18399
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EileenH jennybshaw
Posted
"You would have had damage to your optic nerve years ago and been blind"
Unfortunately jenny that isn't entirely true - GCA can affect many different arteries in the body without ever affecting the particular arteries that supply the optic nerve. Even the temporal artery that traditionally has given the disease its name doesn't have to be involved. Nor does a negative TAB mean it isn't GCA - it just means they didn't find the giant cells they were looking for. Symptoms should always be taken before the TAB result except when it is postive - because that is 100% certainty.
jennybshaw EileenH
Posted
EileenH jennybshaw
Posted
EileenH helen18399
Posted
Your GP should have sent you to a rheumatologist as an emergency immediately he suspected GCA - it is beyond most GPs to handle it. The biopsy is dependent on many things - including the skill of the surgeon and histopathologist - but also a negative result doesn't mean it isn't GCA simply because the lesions (as they are called) are not evenly spread through the arteries and often skip areas which may just happen to be the bit of artery taken. It may not even have reached the temporal artery at all. It may be called temporal arteritis - the only real importance of the temporal artery is because it is superficial and easy to get at!
Where in the UK are you? Maybe I can suggest a good place to be referred to.
helen18399 EileenH
Posted
I did see a Rheumatologist a week after being diagnosed, but only by coincidence. I had been seen a year earlier, whilst having investigation into severe back pain, and had been referred onto Physio by the Rheumatologist. It was a call back appointment, just to check my progress.
I told the Rheumatologist about the GCA diagnosis and he was “happy” with the GP’s assessment and treatment, so far. He told me he would write to the GP to advise re reduction of the meds, but that hasn’t happened!! However, I did get a follow up appointment through quite quickly, which is in a few days time.
EileenH helen18399
Posted
Fair enough - I know Wales has problems with rheumies, especially down south. Yes - at a week being on 40mg was correct. But reducing to 30mg after only 10 days matches no guidelines I know. The starting dose is usually used for at least 4 to 6 weeks and 40mg is the bottom end of the dose range. You can't use pred the way you do in other illnesses, GCA is a long haul journey, years, not weeks. The other problem tends to be that if you reduce the dose too fast/too soon and the symptoms flare up it is often difficult to get them under control again and it often means going to an even higher dose.
Have you seen the "front page" with our resources post:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
The second link is to the NW of England charity - not terribly far if you are at the right end of N Wales, less convenient if you are in Angelsey!
Looking forward to hearing how you get on.
helen18399 EileenH
Posted
I cannot complain about the service provided to me so far, by the NHS - every department I have been referred to has acted quickly.
I already had the appointment with Rheumatology when I got the diagnosis (by coincidence).
The only weak link seems to have been the lack of communication between rheumatology and the GP, which I will try and address on Monday.
I will keep this post updated with my progress.
helen18399
Posted
In a nutshell, the Rheumatologist now thinks I have Fibromyalgia.
The Dr believes that my symptoms, and my response (or non response) to the steroids, puts me more firmly in this camp. Having read the literature he gave me, I can see where he’s coming from.
The plan is to get me off steroids in 3 weeks, have a blood test a week later, and see what levels of inflammation are present in my system.
I can’t say I’m looking forward to that, but at least I haven’t got to go to work, as I am signed off until the New Year.
I am happy to be coming off steroids though - I’m sure I’m getting a moon face and my skin and nails are awful.
All I need now is a prescription from the GP for steroids to get me through the 3 week plan, plus one for Co-Codomol to help me manage pain and get some sleep at night, as requested by Rheumatologist.
My plan for the rest of this month is to stay close to home, potter about as much as I can and otherwise take things easy.
Having read the literature on Fibromyalgia given to me at the appointment, I will follow up with more research.
I am still processing this at the moment, but I am hopeful that we are now on the right track.
Anhaga helen18399
Posted
Interesting. You said you had a non-response to pred, but in the original post you said you felt much better and painfree after you were treated for suspected GCA? That doesn't sound like fibromyalgia which apparently does not respond to steroids as it's not inflammation. But I do hope things are on the right track for you now. And resting, pottering around home, sounds like the right thing to do! All the best.
helen18399 Anhaga
Posted
To be honest, I am worried about how I will react to coming off the Pred quite quickly, but feel I have to do it to see, one way or another, a way through this.
Anhaga helen18399
Posted
I remember you said you hadn't been at your initial dose very long and a too early too quick taper can make it more difficult to control the symptoms later. However let's trust the doctors know what they are doing! At least you are being monitored by a rheumatologist and hopefully coming off pred will make it possible to get an accurate diagnosis one way or the other. Please keep in touch.
EileenH helen18399
Posted
The basic differences between fibro and PMR is that if you have raised inflammatory markers IT ISN'T FIBRO. If it responds to pred - IT ISN'T FIBRO. I don't care what the rheumy says - if you have raised markers you may have fibro - but there is something else going on too.
I'd say you were messed about at the start too much to really know - but hey ho, you are where you are. Good luck and tell us how you get on. You will have an intresting Christmas I suspect...