Help
Posted , 9 users are following.
I have had PMR for 2 1/2 years. This week I have had a scare with an agonising pain above my right eye that was NOT a normal headache (which I am prone to) and which for 24 hours would not respond to several different painkillers I tried. Aware of the dangers of GCA from this Forum, I went to my GP on Tuesday. I live in Zimbabwe where there is no rheumatologist with specialist knowledge of PMR/GCA, and I told her of my fears. She called a physician colleague who explained the dangers associated with untreated GCA and recommended that I go from my hard-earned 7.5mg daily dose to 60mgs. I did that and within 12 hours the pain had subsided and in another 24 hours had more or less dissipated. But... My ESR and CRP bloods came back normal (which I know from this Forum is possible) and now the two doctors are debating whether this is GCA. My GP is inclined to diagnose sinusitis and has put me on an antibiotic and my optician (so concerned about the pain behind my eye and fearing perhaps a tumour I went to him yesterday) has given me antibiotic eye drops.
i have done lots of Googling over the past 2 1/2 years into our condition, not to mention learning copiously from Forum patient experiences. This is something frowned upon by the medical profession which seems to think it leads to dangerous self diagnosis. I don't have the sore jaw symptom and this together with the blood results put a question mark over the GCA diagnosis.
Is there any other way I can determine whether I indeed have it? If I don't have it I don't want to be back on 60mgs - but if I do I don't want my doctors to be quite innocently complacent and take me off the dose. If they suggest I stay on it as a precaution, do I reduce the Pred in the same way as with PMR, ie painfully slowly?
To complicate my situation, I have for some reason been removed from this Forum's email list and have not received any posts for a month. I have tried re-registering to no avail and am hoping by writing this I will be reinstated. I can't give me email details because this will be moderated, so unless this works I have no way of communicating with my Forum life line at a time when I so badly need advice.
Hence,..help!
0 likes, 10 replies
EileenH heather39822
Posted
I've reported your post to the moderator to look at. But you can obviously get on to the forum to post - have you checked your settings on your Profile? A few people have said they haven't had notifications - I'm assuming that you've checked your spam folder? I was getting some but not all but it seems to be OK again now.
You can see the posts since you last got here by logging in and looking at the top right side of this page - where it says "You have new notifications", just keep clicking on the top one and it will take you to the post.
There is no real way of telling it if is 100% GCA I'm afraid, it is a clinical decision unless they do a temporal artery biopsy and it is positive. It is possible to see the signs using ultrasound - but the user has to have been trained to recognise it. If it were GCA and it went on for any time the optician should be able to see signs in the optic nerve - it tends to swell and get paler when the blood supply is not good. Did the doctor check the pulse in the temporal artery? If that artery is inflamed it often reduces the pulse there, but I'm not sure how long it takes before that happens.
How long have you been on 60mg? It's actually a bit OTT with so few symptoms, 40mg would probably been enough. You can reduce 10mg at a time every few days - if you have only been on the 60mg for a couple of days you could drop much faster. What did the doctors say about that? If the headache comes back they will have to think again perhaps.
julian. heather39822
Posted
Maybe a little hope in it being over one eye rather than both.
Mrs_Hobbles heather39822
Posted
This is a very scary situation to be in and of course with GCA there is not definitive answer unless you get a positive from a biopsy. From personal experience I wouldn't recommend a biopsy, very uncomfortable, painful and doesn't always reveal a positive result so still left not knowing. Again from personal experience along with an awful headache, I was feeling generally very unwell and had scalp tenderness and what I would feel is really telling is the soreness and tenderness at the temporal artery. The soreness I would compare with being bashed with a plank at the side of the head. I know we are all different and experience different symptoms and this is just my experience but when presented with these symptoms my Rheumy was in no doubt that I had GCA. I fully understand where you're coming from as regards being on such high doses of steroids and the reducing can be very difficult. Hope you'll be ok and can get the email situ sorted too.
Susanne_M_UK heather39822
Posted
Yes, it may be too late for a temporal biopsy. I had one very late and it was negative, apart from the doctor who performed it telling me that the sample he took of the artery looked withered and unhealthy.
I have to say though, it was NOT painful and I had very little discomfort afterwards, so perhaps it's different from person to person.
EileenH Susanne_M_UK
Posted
I think a lot is to do with how good/experienced the surgeon is. Most people don't find it too bad. One lady on another forum who has had the left temple biopsied now has far less pain on that side of her face! She's considering asking for the other side to be done!
But there is about a 50/50 chance it will show something - and when it is positive, it is 100% accurate.
anapp heather39822
Posted
I had just finished my PMR Prednisone after approx 2 years and it was immediately discovered I had GCA. I was started on 40, upped to 60 and then worked my way down. I never had jaw pain with my GCA, actually never heard the two related, and my markers were always very low. The GCA headache pain is a temple headache and/or temples are tender to the touch, as is head. That's not saying all these things have to be present. Just other things to look for. I reduced the same way as for my PMR but more cautiously. While I might try to work through the recurrent pain during a dosage drop on PMR, I did not do that with GCA. If I dropped a dose and had what I thought was a GCA headache, I went back to the last dose at which I wasn't having headaches. Maybe Eileen will pop onto this site. She is a wealth of information. But, while the information on these forums are so informative and helpful, they don't take the place of a doctor so I always say when in doubt, check with Dr. even though I think most of them are struggling with how to handle these conditions as much as we are. Good Luck.
anapp heather39822
Posted
Ok Eileen's already here. No responses came up on my page until I sent mine. Curious.
heather39822
Posted
Found!!!! Hurrah...I'm back. Thank you so much Eileen and the anonymous moderator. Followed instructions and have found all the missing posts. Two visits to the computer store couldn't do that.
Thank you all so much for the GCA information. My GP admitted yesterday she had never seen a case before - and she's been practising for more than 30 years. So information and advice in central Africa limited. I see her again on Tuesday and am going to ask for a referral to the physician who is more knowledgeable. Without seeing me (just through her telephone calls to him) he has diagnosed GCA.
From those of you who have it, what do I expect now in terms of symptoms? Are they completely masked by the Pred? After 36 hours on the 60mgs the head pain totally dissipated. But is whatever the cause is, still there? Like PMR, does the condition burn itself out? During the Pred reduction can the symptoms return?
I am sorry to ask all these questions which have no doubt been asked and answered over the years, but I have no one else to turn to. My children would like me to go to England for Christmas and I am wondering if I could investigate further while in London through medicos. But know appointments take forever and the country shuts down for a couple of weeks over the festive period.
Thank you all again. What a great, caring and informed Forum!
Susanne_M_UK heather39822
Posted
Hi Heather, yes the actual condition is still there. Just like PMR, the pred only helps to manage it, not to cure it. I've had GCA for about 2 years. I'd had PMR for 4 years previously and was managing very nicely on 1mg pred when GCA struck.
I've had several flares as I've tried to taper the pred, resulting in me having to go back up to 40mg so many times. With GCA, it's even more important, I think, to go slow with the taper. Obviously because of the seriousness of the consequences of having a flare, but also because you end up on high doses of pred again and again. I believe my flares were due to tapering too quickly, on the advice of my rheumy.
Yes, GCA should hopefully burn itself out eventually. Some people get through it quicker than others. I've finally managed to get down to 15mg pred, tapering slowly. My rheumy has finally agreed with me that this is the only way I can do it without flaring.
As for getting medical advice in the UK, you would no doubt have to go down the private route. It may be worth your children investigating whether a private rheumatologist would see you quickly.
Good luck!
EileenH heather39822
Posted
Hurrah!!!! Alan the Moderator is a wonderful guy!
In case you've forgotten this link
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
here it is again. The Bristol paper is pretty sensible about the beginning of their reduction with GCA but a lot of people do find 10mg drops too much and are more comfortable with 5mg.
As with PMR you won't necessarily be entirely symptom-free, everyone is different. But the same applies as you reduce - if the symptoms come back, go back to the previous dose and try a smaller step - 5mg every 2 weeks is the same as 10mg/month and if it works even 5mg a month isn't slow!
There aren't really many people with GCA on this forum, it is after all a rare disease - I suggest you come over to the HealthUnlocked PMRGCAUK forum where there are quite a few with GCA, some recovered and off pred, some still working their way down.
I have actually seen a higher proportion of people with GCA getting off pred successfully than I have with PMR. There are a couple who managed the 2 and a bit years the Bristol paper works on - but the majority have taken perhaps 4 or 5 years altogether but how much of that was because of flares due to optimistic reduction schemes is difficult to tell. One lady was off pred in just about 2 years - and 4 years on has developed PMR! The Mayo Clinic does speak somewhere of "cure" for GCA, they don't for PMR.
Not sure if it is of any relevance in Zimbabwe but tocilizumab is being seen as a possible revolution in managing GCA - but in the UK and USA it is very expensive. It is already used for RA and is under renewed discussion in the UK now - it was rejected for GCA by NICE in the summer but the results of the Phase 3 clinical trial are out and I understand VasculitisUK have been invited to join in a new consultation.
There is a wonderful NHS and private rheumy in Chertsey if you are interested.