Thanks to those who replied with supportive comments. What a weeekend! Clearly need my meds adjusted, as couldn’t get to speak to Rheumatologist, i rang 111 and oh dear ! What an afternoon. Was given an appointment at a hospital fairly locally for a chest check,up, upon leaving house appointment was changed to a local surgery (not mine). Young doc admitted he was not familiar with GCA, steroids and TCZ, immediately diagnosed Covid. I should say here that I was not allowed into the surgery, meeting took place in car park in minus 5 degrees! He eventually thought he had better listen to my chest so in the car park in this temperature I disrobed, he listened, chest clear, I was freezing. He took temp, normal, chest was normal, oxygen levels (oximeter on finger ) wouldn’t register because of cold, so he randomly diagnosed Covid and insisted I go to hospital. I knew this was not right but to placate him, I went for a test and guess what - negative! So am now waiting for my own gp to phone back. I had a phone call from my rheumatology dept who said they couldn’t do anything until I am seen in person in a couple of weeks time. Think I have no choice but to adjust meds myself, I may miss this week’s tocilizumab jab and see. Any advice? If this wasn’t quite serious, it could make a fairly decent comedy film!
Follow up from Feeling Low: Thanks to those who... - PMRGCAuk
Follow up from Feeling Low
Dear god, what a tale. I hope you give some feedback on F to F! Could have made you seriously ill if you weren't already! I fear I can not advise but wish to show some support!
This being unable to see past Covid will result in trouble at some point for someone with a pre-existing condition...
Have you tried upping the pred and seeing if it helps? Where were you last well on pred?
Hi, I am pretty sure my horrible side effects are due to Tocilizumab, May miss a week and up steroids to 10 from existing 8. Was doing ok until starting Tocilizumab. As medical profession not offering advice , feel I have no choice but to decide these things for myself which is surely not right. Not keen on the trial and error approach. I feel I have been put on these meds and left to get on with it -pretty much no follow up. Only dept to maintain constant contact and do face to face appointments is Eye dept who have been very good, but as meds are also to maintain sight in remaining good eye, feel a little reluctant to change anything. Deary me - what a saga, sorry to sound like moaning Minnie but after 8/9 months, my tether has snapped!
It’s pretty appalling really isn’t it? It’s so odd that some deliverers of care are taking things in their stride and others seem to be in disarray along with their judgement. It’s an awful dilemma, at some point you need to see the wood for the trees. Taking matters into one’s hands is terrifying, you have my sympathy.
Just to let you know that I had GCA for 5 years then remission. It took me just over 3 years to get anywhere near 10mg of Pred and I noticed you were diagnosed June 20, in your profile, which I am assuming means June 2020,
TCZ was not around for GCA when I had it and so it was pred all the way.
BTW TCZ is a steroid sparing agent not a cure. There still is no cure yet.
In my eyes no harm in sticking at 10mg and skipping TCZ till you can get it sorted out. If necessary and you feel 10mg is not holding the symptoms then you could up it by 1mg at a time till you feel OK and then wait it out till you get to see them.
Just remember, your body, your decision and your eyesight.
If they decide to bring in the big guns, then they have to be around to supervise. Like DadCue, I think it is so strange your doctors aren't available - the FIRST to be vaccinated here have been the medical staff and over 80s in care homes, now over 80s at home. The UK is very proud of its approach - but it is making medical treatment for others next to impossible despite their shouts of "the NHS is open". Possibly - but no-one is in!
No, not a moaning Minnie -totally understandable.
I think you're showing great fortitude under quite appalling circumstances!! You deserve a medal. Please keep us advised of the outcome. It would seem to me that you are quite right to manage yourself - you're getting precious little help from the "professionals". Onwards and upwards ......................
What an absolute shambles.......try increasing Pred, you really have no other choice...,and hope that’s what your GP recommends as well.
But when you do feel better, and things have settled this really need to be reported....the doctor you saw may not have knowledge of GCA, that can be forgiven, but the outdoor consultation in the middle of winter cannot!
This is worse than any film I have ever seen!😠 It's one massive farce!
Thankyou all, I have calmed down now after venting my disappointment and concerns on this forum, my long suffering husband made me a cuppa, I spoke to GP, feeling bit better, things just got a bit on top of me. It is huge comfort knowing there are other people out there with similar issues, my ophthalmologist said I was a ‘rare’ case, GP has not come across GCA before, rheumatologist is youngish and part time. Would love to know how many people have this.
I cannot comment on your treatment but my goodness you did bring back memories.In March and April last year my G.P. sent me via ambulance to hospital,nothing to do with Covid but on both occasions along came a consultant who immediately instructed that I should be covered up,corridors cleared and sent me to the new ward for Covid patients.
Already having a dodgy immune system due to Non Hodgkins I could see the danger straight away. I received a negative result on that occasion.
Same thing happened the second time,this time I was fuming that my health was being put at even greater risk but no one would listen,eventually I demanded that someone should be sent to see me so that I could discuss the legal implications to their actions. I had not presented with Covid symptoms but at that time it was sheer panic.
You have my deepest sympathy,like you I just felt completely helpless because no one would listen and I was stuck in a Covid ward with positive status patients.
I have since informed my G.P. that unless he is certain I will not be going back to hospital. (in July I did spend six days on the cancer ward but that proved a very different experience ........ denied steroids for 20 hours and found on the floor of the bathroom unconscious,they certainly looked after me after that little episode.
I believe things have improved a lot since then but your experience suggests not enough.
Good luck,you are in my thoughts and everyone on this forum.
What a bizarre experience! The doctor seemed out of his depth. Glad you haven’t got it though. So, have you decided to go up to 10 mgs Pred for now?I paused my Tocilizumab injection this week due to a persistent eye infection, and subsequent antibiotics, this coincided with my COVID jab. I see from PMRPro’s link that we should have a chest X-RAY after 6 months of Tocilizumab, nobody has mentioned this, yet I have complained of breathlessness to both my Rheumatologist and a couple of GPs. I think I will chase this up. I have to say, I’ve felt brighter without it.
Hi What a carry on, a few months back I had a similar situation over a weekend, fortunately I didn’t go through what you did but, I was messed around with via 111 and at the hospital, I also was seen eventually by a local gp attached to the hospital, it was a portacabin outside the A/E dept, freezing cold but very nice doctor, she phoned the on call doctor of rheumatology and they upped my pred. As for the TCZ, yes I’d take it if I were you .
I can’t see why rheumatology can’t phone you, why don’t you try calling the again or email them.
Hope you get on ok.
Xx
It is a shame that some Drs can’t see past COVID-19. Makes me wonder if they are in the right profession.
It’s all so random isn’t it? Just bad luck to get a GP ignorant of our illness and the complications Pred brings with it. So glad you have a husband who makes you tea when needed and that you feel a bit better. The question really is what makes you feel comfortable. Scary not to have proper medical advice but pausing TCZ and upping the Pred doesn’t sound lethal. Maybe you could leave a message for the rheumatologist explaining what you have done and hoping that’s ok - I bet they’d get back to you! Good luck. ❤️
What a saga! You reminded me of my daughter being examined in the car park for her eczema early on in Covid. Shocking! Have you googled the side effects of TCZ? Not all meds suit all people. Sticking with steroids has suited me although the Rheumy suggested that the GP tried me on Actemra noting has been said about it! Sticking with Pred seems to have suited me reasonably - I am just under 2 years in to PMR and GCA and on 8 pred.
How horrible for you. I just can't imagine having to go thru all of that. Good Luck with it all
Poor old you. It really is crazy leaving GPs to look after our problems. I hope you're feeling a bit better now. Love Caroline XXXX
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