Got blood results Friday from doctor. She said 'abnormal' and is referring me to a Rheumatologist and have a CT head scan for suspected GCA, as I've got painful head and ears. I've been started on 8 x 5mg prednisolone per day.
What does the Rheumatologist discuss/ do with you when I go to see them? The two appointments will be separate.
I'm still trying to come to terms with all this, as I need to get a job as only 55, and have always been active. Just need an idea of what the Rheumatologist will be looking for/doing?
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Hollyhock11
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It will be a careful assessment of all your symptoms if they are like mine. A lot of specific questions. Make a few notes for yourself so that you get the most out of your appointment. Especially, when did the symptoms begin ?and questions like that ( I can go blank and forget key things).
Well, good that you are seeing Rheumy and have a CT scan scheduled! That's a good thing!
I did not have TAB or scan, and my blood works was always just slightly above normal... it was only my symptoms and the fact that I responded positively to 60 mg of Pred, that led everyone to believe it's GCA.
To save time, I went to 1st Rheumy appt with the following: list of all medications and supplements I take, a high level overview of medical history, i.e. what I had when, illnesses, surgeries, procedures, etc., a list of comlainst I have seen GP for in past few years (turns out I had had PMR for a few years but it went undiagnosed!), a comprehensive list of all the questions that I had running through my head!
She was very appreciate of all and it gave us more time for for her to answer my questions and tell me a little bitt about what to expect. I'd suggest you figure out what YOU want from appointment. You must be filled with a lot of fear, doubt and questions... The Rheumy is the expert, leverage her/his expertise. Also, my Rheumy makes recommendations to my GP and she follows them...
Not sure what she thinks will be found with a CT-scan. You should have been referred as an emergency if she suspects GCA might be a possibility - did she say how long you may have to wait for either?
That's what I'm saying - this should be referred as an EMERGENCY the same as a heart attack or stroke would be. Not urgent - in this case that could be weeks. Some hospitals have a fast-track pathway for patients with ?GCA - if you don't have one locally then the GP must phone the hospital and say you are an emergency.
Hello, this was me at 54 in March last year. I went via A&E so was squeezed in with various departments rather than a referral with a dedicated slot which may be why I got very little information and guidance. This site did that bit for me. So, firstly 40mg Pred was the right thing to do rather than mucking about waiting if they really do think you’ve got GCA, as long as your symptoms have improved a lot. If not you may need to seek advice about going higher as 40mg is the bottom dose level for this.
The Rheumy will be wanting to rule things out which is easier than confirming GCA. The CT is for that reason not a diagnosis. Diagnosis is attempted with a specific unltrasound, not available everywhere or an artery biopsy from the temple. The biopsy is quite hit and miss and the longer you are on steroids the less reliable the result which can give give false negatives even without Pred. One thing this however, that if it’s positive you really do have confirmation. Even if you have a negative result they will have to treat you as GCA if you are symptomatic because of the risk to your eyesight by not doing so. The blood tests will also be to rule out other autoimmune conditions and see if your inflammatory markers are raised. In my case as in many my markers were within the normal range. Their diagnosis was really based on the fact that my pain and eyesight problems went within two hours of 60mg of Pred like a miracle.
You may be put in for a PET scan which looks for active vascualitis but again, once you’re on Pred the result becomes unreliable. There have been discussions about this on this forum.
You should ask for a DEXA scan to check your starting bone density because Pred causes a process that encourages bone thinning. If it is normal or slightly off, you can argue whether you want to have the bone thickening meds they will almost definitely suggest. Do read discussions on this topic.
You should have your eyes checked by an ophthalmologist to make sure the blood vessels to the eyes haven’t been affected enough to be visible. Again, this isn’t diagnostic.
There is a lot to learn at this stage when you’re reeling from the diagnosis, but it is well worth becoming as informed as possible because although there are guidelines and textbook cases, people vary a lot. You also have more choices than you are presented with quite often.
As for work. Plan A is work while on Pred for at least 18 months, but please research a plan B. The Pred is NOT a cure, but just stops the inflammation causing havoc while your body decides when it will go into remission. Stress and pushing through and not resting will almost certainly delay this process. If you know what your options are should you not be able to work, it will be easier than feeling backed into a corner feeling you have no choice but to run yourself into the ground.
One bit of information that seems to be never given by the medics is diet. Unless there is a medical reason not to do so, a low/no carb diet, with plenty of protein and good fats, will stop the cravings for sugary things, avoid weight gain and likely diabetes as well. You can eat lots of it when the Pred hunger starts. There is plenty on this topic on this forum too.
This is just off the top of my head and I’m sure others will fill in gaps.
No, I’ve not been back since, though some people do. That is because my job is not one I can do by halves and I have a lot on at home as well. My main problem was fatigue, lack of sleep due to Pred, muscle weakness, the shakes and complete brain fog. Some side effects subside a bit once your body gets used to the Pred and others seem to build up after a few weeks or months. In the early weeks my GCA symptoms started to show themselves if I did much more than sit about. I could hoover one room and that was it. Before GCA arrived practically over night, I was working, was very fit and was the one who coped with everything. It was devastating, BUT I have re-evaluated my situation and realised that I could not carry on like I was the only person on the planet who could keep the domestic mill running on top of various disasters. I have been able to step back and see how my approach to life, my job and tendency to martyrdom was making me ill, and it took enforced time out to do that. In a way this has been a gift because I suspect I would have ended up dead if I’d carried on, so GCA is actually the lesser of many evils to me. It’s not all roses because I still have big challenges at home but I look after myself better now and actually can say, “No” if I think it is going to drain me because I cannot afford a relapse. It isn’t great realising that we are not indestructible and have to consider our physical weaknesses all the time; the game is up thinking we can keep going. My point is, is keep an open mind about how it has to go because this is a long haul condition.
I guess I'm still reeling and feel that my diagnosis will still take a few weeks yet! The doc would have sent me for an emergency appointment if she thought necessary as she is thorough. Had eye tests and new glasses recently so know they're OK.
I can't accept yet that I get tired and just want to know WHAT it is!! Should I carry a Steroid card and buy some calcium tablets meantime?
Steroid card - definitely yes. After about 3 weeks your adrenal system will stop working because all your body needs and a shed load more is coming out of a pill packet. Should you have a medical emergency they will need to know that your body won’t be responding to the physical stress in the usual way and might need a bit of help and that you will need more steroid within the next 24 hours to avoid an adrenal crisis. Your adrenal glands should start to sputter into life at around 7mg, but as this process doesn’t always come back seamlessly, you need to carry the card for a year after stopping the Pred.
You should be prescribed calcium and vitamin D because they work together.
Pred makes you feel like you have more energy than you do. I treat myself like a toddler and make myself have a nap even if I think I don’t need one. Usually I lie down in the afternoon feeling digrunstled but will be out like a light in 10 mins.
I expect you’ll feel more settled with a few more answers even if it is only knowing what it isn't. To feel at sea at this point is perfectly natural.
Mind you - good luck finding one!!!!! The NE PMRGCAuk support group has a specially designed one if you get looked at as if nuts by the doctor/pharmacist (a common response)!
WARNING RE: "Pred makes you feel like you have more energy than you do." - well, not always.
I have GCA, diagnosed Nov 2016, and started on 40mg pred then. Whatever the cause, I had no energy at all on that dose of pred - just needed to sleep all the time - day and night in the early months. It will have been partly the GCA itself, but the pred made it worse. Not sure if the steroid-induced diabetes had anything to do with that. I also had very noticeable muscle weakness from very early on and, I'm afraid, could not possibly have worked for quite a long time.
Now, almost 16 months later and down to 7.5mg, these symptoms are much better. But I'm still not 100%, and it has been a long haul.
I presume that the CT scan will be to check that it might not be GCA but something else. If they suspect GCA You might have a temporal biopsy (either side of your forehead). Do not worry about this, it is not painful and very near the surface. Where they take a small biopsy of the blood vessels there to find if there are the large cells of GCA. My headaches felt like someone was pulling me up by my hair, also painful jaw....but everyone is different. You will probably be put on 60 mg (or perhaps more) prednisone per day, which it sounds like you are already on. If it is GCA this should take care of the headaches and you should feel a lot better. I live in the States, so not sure how they tackle this in U.K. But I expect it is similar. Anyway good luck and I hope you feel better soon. Let us know.
Hi Stella, my head aches all over like wearing a skull cap! That's what the CT scan will be for. I'm on 40mg Pred a day as a precaution by doctor which is making me tired.
I'm losing my hair so think I'll get a wig! Wonder what the Rheumatologist is going to diagnose!?!
Hi Janine, losing y our hair could be due to Telogen effluvium. This can happen after an illness, having a baby, being very anemic. It does resolve itself, but mention it to the doctor when you go. Though my Rheumatologist didn’t know about it, I went to a dermatologist who knew right away. I’m sorry about your painful headaches, I know it is miserable. Remember everyone reacts differently, so what others experience may not be the same as you. I also felt very jittery on 60 mg prednisone, in fact I felt like another person! I had trouble sleeping and took sleeping pills. This wore off as I lowered the dose of steroids. Also someone mentioned diet on this a site and I agree, try to eat more protein and less carbohydrates, sugar etc. Good luck.
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