Well where do I start lol. I am in the clinically extremely vulnerable category for Covid 19 so as a result I’ve been shielding and so far so good 🤞it’s not been easy especially as my dad had a fall and as a result was diagnosed with terminal cancer that was in mid March, he died in May. Obviously I wasn’t able to visit him or go to his funeral which was tough and couldn’t even have a hug from my husband to console me. But it’s ok I’ve been strong throughout. The other news is my rheumy appointment was cancelled in May and I’ve heard nothing from anyone lol but I understand, I have tried for the last two weeks to contact my consultant because I’ve been experiencing the worst flare I’ve ever had for months I don’t think the stress has helped at all but due to having several chest infections from October to April I have had to stop the baricitinib I was taking and that’s the end of that as an option. I did beg my GP to give me some prednisone about 5 weeks ago and he prescribed a low dose for three weeks. It’s helped a little but I’m still flaring out of control. Anyway today my rheumy consultant got back to me and although it’s not perfect he knows me and knows that I need help or I wouldn’t have asked not one to moan or trouble him unless I’m desperate. The upshot is I’m now on 20mg of prednisone for two weeks and will continue to taper until I’m down to 5mg approx 10 weeks, that should sort me out. But a plan has been put into place when it’s safe enough for me to see him face to face to change my meds to Enbrel so at least I have another med to research and plenty of time to consider it. But wow I knew a quick phone call would sort me out so here’s hoping things will get better. Sorry for the long post and I suppose a bit of a moan but please everyone who’s in my boat with a flare don’t leave it as long as I did.
What a difference a phone call makes !!!: Well where do... - NRAS
What a difference a phone call makes !!!
Yes I had a good result today as well. It really does make a difference. Hope things are on the up for you . You have had a tough time
Yeah just seen your post amazing isn’t it 😃. I know things have been tough for you too fingers crossed we both improve very soon.
I am so sorry and saddened to hear what you have been going through and want to send you not only my heartfelt wishes but if I had a huge comforting blanket I would wrap it around you too. I cannot imagine how you must be feeling and no wonder you feel the way you do and you are so strong. I am so sorry for the loss of your dad and in the circumstances beyond our control you were not able to see him or attend his funeral. This virus had tested/pushed people to the limit and I don't know what to say other than I hope you have been kind to yourself and allowed yourself to grieve. I'm glad you managed to get in touch with your rhumy and there is a plan in place for meds and for a face to face consultation in the future. Take care and I hope each day you feel a little better. Warm wishes,Pip x
Thanks so much Pippy25 for your kind words it has been tough for everyone and I know I’ve neglected my own health with all that’s been going on but I have to fight back now because whatever I do won’t bring my dad back and he wouldn’t want me to suffer so I’ve bit the bullet kicked my ass and done something about it for my sake and the sake of my family and awaiting better times for all. Ever the optimist eh. I think my message was more to all those fellow sufferers who haven’t wanted to bother anyone and seek help when they need it. I will no doubt suffer the consequences for a while but hopefully not as bad as it has been. Pester your consultants if you need to, it’s not like me but I had to.
Some or the things you wrote resonate with me, I'd just finished bereavement sessions on the Thursday as we went into lock down that week, so felt all the things I had shared about starting to get out more after many decades of caring, went out of the window as I shielded alone. I'd had some abnormal readings in some bloods I had taken and again with lock down was unable to have further tests to establish what or why this had occurred. Like you I didn't want to be a bother and tried to keep going, but things were clearly not getting better and thankfully today I was able to go for blood tests. So I agree with you in respect of seeking help, sometimes we err perhaps on the side of being too polite, not wanting to trouble or feel like a pest by contacting and while trying to be respectful of this virus, we and others with other illnesses end up suffering in the process. Totally understand that services have been stretched etc but if we neglect those who have underlying or serious health issues, it only escalates more problems to have to deal with. Sometimes even if it's not in our nature have to bite the bullet so to speak. x
I’m sorry for your loss too it must have been really tough for you too especially with having to shield alone. I at least had my hubby to support me from a distance even in the same house. I hope the bloods you’ve had done come back at a normal rate and don’t add to your worries. Please try and take care of yourself and it sounds as though we are a couple of peas in a pod but I had to ring loads of times to finally get a call back and my hubby had had enough so he rang them today on my behalf. I have a really good consultant and knowing him he’s probably doing the job of ten others so I do sympathise with the stresses the docs have had to deal with too. Stay safe and well yourself and hopefully life will get better for you very soon or at least a little less abnormal than it has been for all of us. When you get the opportunity and it’s safe again surround yourself with life.
Hi Leics, you’ve had a really tough time indeed and I’m not surprised you have flared and felt awful with all that was happening physically and emotionally. I hope you can soon start or feel better once you are on Enbrel. It can work fast for many people so here’s hoping. 🙏 A gentle hug to you. x
Thanks good to know about the Enbrel think it won’t be too straightforward in my case with severely compromised immune system but no doubt rheumy will have a plan 🤞. Thanks for the support though it’s appreciated.
So sorry to hear about your Dad Leics. It must have been so awful for you not to see him and go to his funeral.
It's no wonder you've flared. I do hope the steroids kick in soon. Just wondering if 3 weeks is going to be enough as the Enbrel may take a while to kick in. I hope it is.
Take care
Kiki
Thanks consultant has given me 10 weeks of steroids start at 20mg for two weeks, then 15mg, then 10mg until I reach 5mg. I’m not having a good day today I’m in soo much pain can barely move. Hoping the prednisone starts to work quickly. Enbrel won’t be an option until face to face whenever that will be lol.
Oh really that's not good. Some hospitals are managing fine to see patients. I would contact the doc again as 20mg isn't enough for you. I once had 30mg for a flare and it worked within hours.
Don't suffer darling.
Bless you the 20mg is the highest dose I’ve ever been on I have to be very careful coz of immune system issues etc. It’s a slow process but I’m starting to feel a little brighter at long last. It really isn’t safe at all for me to go to the hospital for any reason unless it’s an emergency because of my risk factors. It made me laugh though I got a call from rheumy nurses yesterday checking up on how I’m doing, I think that they’ve perhaps had a rocket 🚀 from consultant because technically I should be taking a JAK inhibitor but biologics nurse etc has never been in touch, or GP or anyone for that matter. But as I’ve said to others some of that is my fault I left it too long to get help and I suppose they’re not mind readers lol.
One thing I learned early on in my RA journey was to chase everything up. Those that shout the loudest get. Sad but true.
So true !!
Pleased you had a good outcome darling.xxx
Hi Leics. What a terrible time you've had. I'm really sorry to hear about your dad, that really is very sad and not being able to visit or go to his funeral is awful also shielding and not even being able to have a hug from your husband even would make you feel even worse-it's like a form of loneliness. No doubt this has added to the intensity of your flare and probably the recurring chest infections too, when you get one after the other like that it makes you very low. I hope that things start to improve for you and that you'll be feeling much better very soon. xx
Thanks, have to say the last time I saw my dad on a video chat he had two black eyes and a broken nose where he had had a fall and hit the deck, the resulting scans picked up terminal cancer and there wasn’t anything they could do, but to be honest I’m glad if it had to be that way that he didn’t suffer and was cared for brilliantly by his local hospice and remained in his own bed and went peacefully. I suppose it’s all we can ask for in those circumstances. I’m ok my dad lived 150 miles away from me so it wasn’t possible for me to travel anyway. At least there was some family members there but only 11 people in total which is such a shame, he was a good man and had no regrets. I will be fine when the steroids start to kick in they’ve got some inflammation to be working on that’s for sure but I will be back fighting fit and causing trouble soon.
😁😁 xx
Hi Leics. I am so sorry to hear what a terrible time you are having. So much to have all at once. I am so pleased that you have managed to speak to your consultant and really hope the steroids start to settle things quickly for you. I have been on them for nearly three months now as just in the midst of changing medications again in the next couple of weeks. Really hope that they work quickly for you. Thinking of you. x
Thanks it sounds like you’ve had your own issues to deal with. I will bounce back soon I’m sure. At least I’ve got plenty of time to consider the next course of treatment suggested which will probably be Enbrel. I hope your new meds work well for you and you don’t need the steroids for too much longer. With any luck we will both be up and running again by Christmas.
Glad things are improving. Enbrel is the good stuff. Wish you well.
Thanks will take a little time for me to get going again but hopefully in a few days the steroids will make me feel better because I’m not particularly having a good time atm flare is causing havoc and definitely not a good day today. I’m grateful for everyone’s support though. Enbrel from what I can tell is very good I just hope that it doesn’t cause me too many issues coz my immune system is pants and won’t ever recover but I’ve known that for about 6 years now. Might be that I have to have immunoglobulin therapy along side Enbrel but who knows that’s not something I have to worry about yet and decision will be mine but will definitely get the views of my excellent rheumy and immunology too. I’m sure they’ll be a plan which will be tailored to me.
Yeah was kind of feeling abandoned but some of that was my fault too much going on to seek help should have done it much sooner. So my fault but not easy to speak to anyone atm but there again it never was. Hey ho it’s understandable.
What a horrible time you have had and thank goodness you are having some things done to help you. I do hope that by now your flare has diminished and you are feeling much better. Such a heartwarming and thoughtful post with some great replies. I had breast cancer last year and caught CV19 end of March. I am still recovering now and super shielding as I have no antigens, no antibodies and my white cells have also been wiped out. I also lost two dear friends at the beginning of lockdown, not to the virus but one to a massive heart attack at just age 50 and the other to suicide which was tough but he did have terminal cancer and was in terrible pain. It's so sad that very few can even go to the funerals but as we know it has to be like that until we reduce the spread and work out how to eradicate it completely or at least control/contain it. I wish you well and all of you in your path to hopefully the end of this pandemic and lockdown. I cannot stress enough on you all to please be very careful. I would rather go through my lumpectomy, weeks of chemotherapy & then radiotherapy again than go through COVID 19 again & it's continuing after effects on my body right now. Please continue to take care and stay safe & well, knowing that you will hopefully see & be able to hug your loved ones in the hopefully near future.
Oh I’m so sorry for your loss and the terrible time you’ve had too. Cancer treatment in itself is hard enough without getting Covid and losing dear friends. I really feel for you I really do. I’m still having a really bad time with this flare at the moment but the steroids have loads of inflammation to work on so I think it will take me a few days before I improve. We are being ultra careful too because my immunoglobulins are non existent and I probably won’t ever get a working immune system back hence being at high risk. Mine weren’t knocked out by chemo and cancer treatment though even though I had bowel cancer when I was 35 if it’s possible to imagine I was lucky to just have to have a really big operation and a bonus hysterectomy as I was open already without needing chemo that was 20 years ago and touch wood I’m still cancer free. I hope your recovery goes well I’ve heard of lots of people who are fittest anyone could ever be that are still struggling after getting Covid so I can’t imagine how difficult it is for you. Hoping for better times for all of us soon. Thank you so much for your support and I am sending you my very best wishes for a quick and full recovery.
The thought of Embrel for you gives me hope as I read your note. Last year, things were not working for me. Started on Embrel at the beginning of the year. It took a while, as some meds do for us, but this has made such a positive change in my PsA. Along with feeling better, I am making great changes in my health an mental well-being.
Hope is so essential to our future health. You will be in a healthier place soon!
Thank you it’s great to hear the Enbrel has been so positive for you I’m looking forward to better times mentally but physically atm. I know it’s going to be a fair while before the new treatment can be sorted for me because it’s not going to be straight forward (due to complications with having no immunoglobulins that work). But I’m glad to have some hope of a new treatment that could change my life for the better. For the moment I’m hoping the steroids will make me feel better in a few days and then keep me stable until a treatment option can be sorted. My lovely consultant did say there is no way I can expect a face to face appointment at the hospital anytime soon to be honest I know it would be a bad idea so wouldn’t want that either. I’m a very strong person and most things don’t get me down but everything has come at once so that’s why it’s a bit pants at the moment. Hey ho I will bounce back I’m sure and really hope that everyone’s lives improve and we can all have a little normality back, I’m not daft enough to think that there is not one single person in this world that has not been affected in some way by this pandemic. So I hope you stay well, stay safe and stay strong. Thanks for the positive news about Enbrel that’s good to hear.
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