Hello, first of all sorry for my bad english. My native language is the hungarian. It is my first post here but earlier i have learnt a lot here, and found a lot of useful information and help about PMR.
I am 49 years old and was diagnosed with PMR in August of 2023 and was prescribed steroid 16 mg daily. Now on 11 mg and tapering down by 1 mg per month. What i am worry about is that i developed a few symptoms that point to GCA. I have headache both in my temple and forehead area and small jaw pain when I eat and mild face pain similar to sinusitis. The headache is mild, and does not last all day long. I have small focusing problem in my left eye, not blurry vision, but quite strange feeling. I have dry cough for more than a month now. When these symptoms started about a few weeks ago I visited my rheumatologist and she told me that these symptoms are not related with pmr, I would have to visit a neurologist because it is probably an aura migraine. I don't think so, because i never ever had any symptoms related with migraine earlier in my life. I am a very scared because I'm aware of GCA and I am very stressed at the thought I would have it. Can the GCA develop during the steroid treatment of PMR? Or usually the GCA comes when the PMR is in remission and the dosage of steroid lowered? I little bit confused. Thanks for your help.
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aewin
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You rheumatologist in that they aren't PMR symptoms, but she should be fully aware that they do sound very much like GCA - and should have acted on them... not suggested a migraine..
This is a reply about GCA/PMR I wrote the other day which may help you -
GCA and PMR commonly overlap... some have PMR, some have GCA, some have both.
PMR is observed in 40-60% of patients of GCA patients at diagnosis.
Between 16-21% of PMR diagnosed patients may go on to develop GCA throughout their PMR life.
Pred does not change the lifespan of either disease as they are self-limiting.. as you say it only controls the inflammation caused by the underlying illnesses.
The doses taken for PMR are not sufficient to control the inflammation in GCA [minimum starting dose without sight issues is 40mg.. considerably higher with sight disturbances].
If you have PMR and aren't taking Pred, your GCA may develop earlier that if you are taking them, but I wouldn't say for sure that happens... also you cannot "assume" even being on Pred is going to stop you getting GCA. As we know that doesn't happen either.
As you have symptoms that sound very much like GCA, you do need to seek further medical advice whether that be to your local GP, or back to Rheumy, or try and get a referral to another rheumy.
Not sure where you reside, but as you started on 16mg I'm guessing it may not be the UK... so your medical protocols may be different, perhaps if you tell us which country, we may be offer a bit more assistance.
In my non medical opinion your Rheumatologist is not being cautious enough. I have both PMR and non cranial GCA. My Rheumatologist investigated further with less to go on. She organised a vascular ultrasound scan and subsequently diagnosed the GCA. I was on 3 mgs of Prednisalone for PMR of 4 years duration. 11 mgs of Pred would not be sufficient to suppress GCA sufficiently. My symptoms were quite vague but I felt unwell and on the balance of probabilities, she looked further. She immediately put me on 40 mgs of Pred. You will know about the consequences of ignored GCA. The scan showed the tell tale halo cells in the arteries of my armpit.
Your Rheumatologist has left you with no option but to go down the emergency route. I would take up residence in the Accident and Emergency Department. Or if there is one in your part of the world an emergency Opthalmologist. Suspected GCA can be an emergency, with your sight at risk. You could try ringing 111 if you are in the UK for advice on where to go.
I sincerely hope your Rheumatologist is right and there is nothing seriously wrong but the jaw symptoms are a real red flag and something my Rheumatologist would regularly ask me about. All my best wishes. X
That group of symptoms sound like it might be GCA. The doses for PMR aren’t high enough to stop GCA if it is going to happen but might slow it down. Normally a GCA dose is 40mg and above.
These symptoms should be taken seriously because your risk of GCA is higher if you already have PMR. Can you see a different doctor?
Thank you all of your replies! Your answers confirmed me that i have to go further and seek a specialist who can find the right diagnosis.
I live in Hungary. The steroid medical protocol here is mainly the Medrol (methylprednisolone) which is slightly stronger than prednisone. 16mg of methylprednisolone is equivalent to approximately 20mg of prednisone.
I could discuss with my local GP this afternoon and she understood my concerns and agreed to raise the dosage to 40mg until I could discuss with another rheumatologist or neurologist. I hope the 40mg will helps eliminate my GCA related symptoms...
Pleased to hear that your GP has taken you seriously. Hope you get an answer soon. From my own experience with this dilemma, I would push to see an opthalmologist, if that is possible.
I hope this works for you. We use the steroid prednisone. Was started on 60 mg a day the slowly was tapered down. Now on Actemra only which is a injectable. Good Luck
Hello Aewin, just to add to what has already been said, the persistant dry cough is another sign that not all doctors recognise as being part of the GCA tableau. My cough lasted for almost 2 months and was dismissed as insignificant because my lungs were ok. But it turned out that I did have GCA and LVV (positive Pet-scan and biopsy).
Last week they made a radiograph because of the constant cough and I was told that everything is OK with my lung.. How long did it take for your cough to stop after the big dose of steroid?
Better than my Hungarian!!! I did enjoy my two trips to Budapest! Especially the campsite - Zugligeti Niche Camping at the end of the tram line. Is it really closed now?
Possibly uncommon with PMR - but they ARE seen with GCA and if the patient with PMR starts displaying symptoms of GCA, the doctor needs to wake up. I'm pleased you have already gone further - I hope the next doctor is better informed.
Yes, Budapest is a beautiful city I'm glad you liked it! I don't know the camping you mentioned because I live 200km from there, but based on a google search is really closed.
I hope the 40mg works, but please be vigilant - I had been on pred for PMR for a year when I developed GCA and 40mg was not enough. I hope you can find a more useful rheumatologist quickly.
Hello, just a small update about my health status. I met with another reheumatologist who did actions very quickly when heard my GCA related symptoms. She was very helpful and very well informed about the PMR/GCA. She organised in the hospital immadiately a doppler ultrasound about my armpit, neck and temporal area. I was told that everything is ok, all of my veins is in very good condition. Yesterday they made a full body PET CT scan, thanks god everything is ok again. My CRP and sed rate values were normal. Overall my blood work is normal.
But, the doctor told me, that based on her experiences all of my clinical symptoms point to a GCA and she raised my Methylprednisolone dosage to 64 mg (equivalent to 80mg of prednisone).
Tomorrow i will go to an ophthalmologist and next week back to the rheumatologist again and to discuss the further steps.
I am on 64 mg since 5 days. My dry cough and my headache disappeared after two days almost totally, the jaw pain is improved too.
But unfortunately i developed some new symptoms. Crazy dizziness and nausea all day long, tinnitus, burning feeling in my lower leg. Blurry vision and small focusing problems that longs few minutes to few hours. Small tremble in my arms and legs 3-4 times a day.
Did somobody experienced these kind of symptoms during the big dosage steroid treatment? Can be these symptoms the side effect of the high dosage steroid and will improve when I lower my dosage? Thanks the answers!
I think the leg symptoms need to be checked out by a doctor as soon as possible. It is good that the very typical GCA symptoms have improved with the high dose of steroid but GCA can cause deep vein thrombosis and it is also associated with high doses of methyl pred. It may not be - but it is safer to be more cautious and be sure.
The dizziness and nausea and tinnitus could well be due to the high dose of methyl prednisolone. Steroids can also affect vision.
I'm glad you found a doctor who took your symptoms more seriously. ANd the improvement in the symptoms does seem to suggest they are correct.
It will be in 5 days, next monday. The burning and tingling feeling are symmetrical in both of my legs. Mainly in the calfs and soles. Don't know is good or not...
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