Sadly, this morning I've been diagnosed with GCA. Blood test taken and results of that will come in next Friday for my next consultation. I had a feeling from the jaw pain that I did in fact did have it, but was hoping it was down to my anxiety and possibly clenching my teeth. So he's upped my Prednisone from 10 mg to 40 mg daily and if I experience any other problems to take 60 mg. He will review me next Friday. Inflammation marker was up to 22, not sure with today blood test whether that would have risen again Visit to dentist yesterday proved all my teeth are fine. So what with the worry of the virus and now this, feeling a bit fragile today and sad !!
Oh dear. I was just about to pm you to see how it went. The main thing is now that your sight will be protected but if you get visual problems you should not wait for Dr say so to increase to 60mg. Make sure you rest today Anne. Let the pred do its work. It's still possible to manage some side effects of pred and its not forever. Please take it easy and let me know how you are doing later. 💜
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What am I to expect with side affects at this high dose a part from sleepless nights ? X
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I Think some people do find they sleep worse, but others report sleeping OK, even better than usual! There is of course the" Moonface" where your face looks rounder. You can get fat deposited on the widows hump Place. This does go eventually as you lower especially if you do a low carb diet. The lower carbs help manage the glucose spikes the pred does and stops weight gain and higher blood sugar roller-coaster. There are other like hair thinning and skin too. Get doublebase gel for dry thinning skin. You will probably look really well to others as your cheeks may be rosey. There can be others but these are all potential side effects and you may not get any that are more serious than hair thinning. The main thing is you hang onto your sight and to me it's worth it. Please read the dorsetlady introduction to pmr and gca. But for the next few days just get used to the feeling. Remember once things settle you may taper quickly to lower doses. For now you need what you need to keep that eyesight. Xx
I bet! That’s rubbish isn’t it? Hang in there, keep breathing, shed a few tears, enjoy some sunrises if you can’t sleep, take every day or every half day as it comes. 💐🦚
I'm sorry , as a fellow GCAer I know what it feels like to get that news but we are all here for you if you need us.
Just try and relax as much as you can over the week ahead so you can adjust to the higher doseage and the news , you can make plans and big decisions after you have got used to it.
So sorry to hear this but it just shows your gut feeling was right. But I’m glad you’ve at least got the diagnosis and correct treatment now which will save the sight of your good eye. Take care. x
Anne, I'm really sorry to hear this - but thank goodness it has been identified and is being treated so promptly.
I was hoping to possibly meet you at the Maidstone meeting next week but not sure if it will be held now - I'll keep checking. Hugs, Mel x
Ah, thank you Mel, There is no way that I'll be attending as Mr Saha has recommended I don't go out while immune system is so compromised. And me having asthma too would be too risky. What a World we now live in that a Virus
is now taking over all of our lives. However, to have to stay in-doors for the
duration is better than the alternative. I will do my best to remain as positive
as possible. Having all you girls support means the world to me, as only all of you
know what it's like. I have to try and relax now and bring down my BP which when the nurse took it at Kim's this morning it was 199/ over, I can't remember
that bottom number haha..so shocked it was that high but know it was down to
anxiety. They're all so lovely over at Kim's. Thank goodness I got the appt as
early as poss, as on the 27th Feb I was instructed by Mr Saha and 111 to get
over there with the symptom of pain jaw. Blood test taken that was 22, which
isn't high but too high for Mr Saha's liking he told me today. Hope the blood
test taken today doesn't prove too high next Friday. But the registrar over
at the Medway hospital hold me I didn't have GCA as I wasn't presenting with
other symptoms. A lot he knew. We know our own bodies and deep down
knew I had it but was trying to convince myself that I'd got TMJ from clenching my teeth during sleep. I also managed to get an appt at my dentist yesterday
to check it wasn't one of my crowns causing the pain, my teeth are all fine.
Just seen this Anne. Was going to PM you to see how you’d got on. You will cope but hard to receive this news. The positives are that your sight will be saved ( just keep your eye on symptoms just to keep in check) also being in, resting and giving yourself some TLC you are not missing anything outside your front door.
Sorry to hear this news but so pleased you went to Consultant and had your teeth checked. Just take care of yourself now. Lots of virtual hugs. Xx Jackie
For some reason I went back to Edit my message and most of it has now disappeared.
Because I wasn't presenting with more symptoms when I took myself off to the hospital on the 27th of Feb 2020, he concluded no GCA....how wrong he was and really needs to be told so he can potentially help someone else. He was a very nice registrar though, which filled me with confidence. I should have known better as it was the NHS that missed my bacterial meningitis back in March in 1994 resulting me losing the sight in my left eye...so you can see my anxiety in losing the other one through neglect. Ironic really, as the meningitis was 11 March 1994 and GCA Friday 13th March 2020. 2020 isn't proving to be a very good year for any of us with the virus hitting so many countries making it now a Pandemic.
As the top part of my message disappeared, I was saying I hope my Rheumatologist has got me on a high enough dose of Pred. He's started me on 40 mg until he reviews me next Friday and will have the results of my CRP. On the GCA info it says usual dose is 60 mg day. I'm sure and hope he knows what he's doing. He is a youngster and seems very caring. He was reading off the internet before he decided to prescribe 40 mg, but said any problem with vision to increase to 60 mg.
Stay safe and thanks again Jackie I appreciate your message and will let you know how I get on...so far so good with only mild symptoms still.
It's a bad news good news story and personally I would emphasize the good. The proper diagnosis has been made and you can now manage things with the help of, what sounds like, a sensible doctor. Most of all your sight is being protected.
I was atypical with my PMR diagnosis in that it took 40 mg to settle the initial inflammation. I felt marvelous! In addition to the moon face and later widow's hump I got terrific hard fingernails for the first time. My hair remained as thick as every and my curls got curlier. I love my wash, fluff and wear short hair. However, I did have trouble sleeping at the higher dosages and took prescription sleep meds until I got down to around 17 mg, about the same time as my face returned to normal. I stopped them cold turkey without any problem. We're all different in terms of how we react to various meds, including prednisone but it's not always in a bad way.
Sorry to hear that your GCA has now been confirmed. Amongst my ailments I have PAN (Polyarteritis Nodosa) so share a lot of common symptoms with you and in, some ways, know what you are going through.
I also have pain in my teeth. My dentist thought that it might be an uneven bite, filed down a few teeth took a few X Rays and said that all was good. But no change in the teeth pain.
Now almost finished my antibiotics for my chest infection. Phoned the GP and asked her whether I needed more stronger antibiotics. She said don't come to the surgery but phone 111. Now been holding on 111 about 45 minutes and being held in a queue. Queue must stretch to Glasgow then !!
Sorry that you are/were feeling fragile and sad. I trust that the appearance of the sun today has cheered you up a bit.
If you feel the need to chat to someone send me a message on here.
Thanks Pete, appreciate your reply. Yep, lovely day today and even ventured out to our local Asda. Still not much on the shelves but will cope with what I managed to buy. When I bite down on my top back left tooth it's still painful but jaw discomfort gone.....wondering now if in fact it is GCA, it's a hard one to diagnose I understand. But our sight is precious so would hate to lose that. Wondering if I'm still clenching my teeth during sleep that can be causing the tooth pain. Seeing my rheumatologist privately again this Friday with the result of CRP marker. If that has raised higher than 22, (should be 3) then the inflammation has returned. I've asked his secretary if it would be possible to have a telephone consultation instead of me going over to Bearsted to Kim's (£75 on the 'phone and £175 if I see him) Having said that if I was having to wait for the NHS things by now would have been bad. So far spent over £2,000, but we can't put a price on our health can we?
Thanks for your reply and good luck on Friday. Yes, I would hate to lose my sight as well. I love the spring with the vibrant colours of the flowers. Sure gives me a good feeling then.
Yes, I am self isolating. I started last week and was then advised by my GP to start it this week. Not sure if I can hold out for the 3 months they recommend, but will certainly give it a shot.
For 111, I hung on for over two and a half hours, but was just held in a queue. At that point I gave up before rigor mortis set in !! :o)
The surgery I belong to has a locum doctor now and the nurse that I usually see is off self isolating. To think that this all came about because of some idiots in China selling some dodgy food. Anyway, the locum said that he wanted to put me on some new antibiotics "You are not on warfarin are you". So obviously not read my notes. Shame as normal GP is brilliant. Anything you want Meds wise he will give to you. Whereas my last practice in Sevenoaks would say "Oh that's a bit expensive. Do you really need it?" I would not ask for it unless I needed it.
I think that I have rambled on enough now.
Anyway Anne, again, good luck on Friday and let me know how you get on. As you say, you cannot put a price on health.
Hi again Pete, I've decided not to attend on Friday after all as it's too risky being asthmatic and being on high strength steroids....compromised immune system. Also cancelled private bone density scan again privately as GP wouldn't pay for one. A problem women only have from taking steroids, potentially could end up with osteoporosis...taking high strength Calcium and K2. His secretary is going to ask him to ring me for a 'phone consultation instead, which he did for me a few weeks ago. Just need to know how long I will need to continue high strength steroids. No, not on warfarin thank goodness. Just inhalers and now blessed steroids. Are you on steroids ? Been watching the Press Conference....such a huge worry for everyone and businesses. Seems just like a bad dream. I'll be 73 in May and never known anything like it in my lifetime. Just wish people wouldn't be so selfish regarding stock piling food, there is enough to go around for everyone. It's just taking the chance and going to the supermarket without catching anything.....can't starve though.
Although you want answers/treatment, I think that you have made the right decision by cancelling your appointment. I think that a telephone consultation will go someway to getting you where you want to be. For me the risk is far too great as well. I have received a letter today requesting that I get an MRI done at Guy's hospital and contact them soonest to arrange the appointment. Well, if October is soonest, then I will go as I do not want to venture to London amongst the crowds (not that there seems to be too many travelling by train now) especially when they advise you not to go to crowded areas.
This Covid19 does indeed seem like a bad dream or nightmare. This virus has done more damage than ISIS and all the terrorists put together. I am the magic (?) 65 this year and have been retired for 16 years due to my health. I think that I have seen the best years of my life as the next few will be quite awful I fear. Companies having gone bankrupt, we will still have the utilities, chemists but not sure what else.
In fact ISIS recently told there terrorists not to go to Europe because of this virus, so I guess that is something of a consultation albeit a small one.
With the locum doctor, he decided to up my existing antibiotics as well as my steroids from 15 to 40 and reduce my Mycophenolate to give my immune system a chance to help combat this chest infection. I have been steadily reducing my steroids and was happy to have got them down. That is now out the window !!
Cie la vie.
Regarding going to the supermarket, quite a few are now opening early for the elderly to be able to get their shopping. Fortunately I am OK at the moment, so don't have to worry to much. I inherited 2 fridge freezers here plus brought my 2 from Sevenoaks. Costs a fortune to fill them up, but glad I did. The only thing I will need on a regular basis are my Meds. and milk. But my GP in Cranbrook allows me to order 8 weeks worth at a time, so I am OK on the front for a while.
If your MRI is to go ahead, you could try asking your GP to arrange patient transport for you so you avoid public transport - you definitely would come under the higher level of risk being on that high a dose of pred plus mycophenolate. It is different ambo staff from the emergency ambos so you aren't taking away from that.
I have been in touch with Guy's Hospital, they tell me that, even though they sent the letter to me, they are not currently making any MRI appointments.
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