Thank you!!
Iām actually feeling rather depressed right now. Humira seemed to be my perfect answer when it worked within days, itās a cruel twist when ten days in my immune system rebelled. A very nasty allergic reaction that has scared me. I hope this doesnāt mean Iāll react to any biologic. To make matters worse Iāve flared up and have three weeks to wait for my new injections. Feeling a bit sorry for myself but Iām sure itāll pass.
I can imagine! Big hug itās so hard not to get your hopes up too highā¦ but then you donāt want to be too negative eitherā¦ you will get there! Iām sure of it!
Yes just keep plodding on. Itās hard but you will get there.
I really do hope the next one goes well for you
Thank you everyone for your support. Iām not normally a moaner but I hit a low point yesterday. Allergic reaction very nasty, hives have more or less gone but Iām still getting stabbing pains. Guess itās just moving itās way out of my system. This morning Iām picking myself up and starting all over again
I was just thinking to myself when I noticed youād posted your links, this would have to be the only forum / page / pretty much anywhere on the internet I would click on a link like you have postedā¦
So I did
I have no knowledge of art, so to me they all look amazing, but my favourite, for reasons that are beyond my reach to explain, is Charlies Garden. As Poo says, you will get there, and get back to what you love
Oh Jen ha ha!! Iām not a hacker, promise! I forgot the links are on my emails as a signature, and Iām replying from my email account rather than on the forum, so I didnāt realise theyād show up.
Thank you for liking my artwork. Iāve been unable to paint for months as my hands are badly affected by this blooming disease! Charlieās Garden is a rock formation in the sea, in Collywell Bay, just on the coast where I live in the fishing village of Seaton Sluice in Northumberland. Itās one of my local scenes that Iāve painted. Glad you like it. The local legend says it was once connected to the mainland and someone called Charlie had his garden on the cliff top. Then it broke away from the mainland and sits in the bay. Charlie continued to work in his garden by climbing up the rock, apparently to a ripe old age. ļø
What a lovely story of Charlieās persistence and love for the little things (or not so little - in the case of the climb up that rock)
Kath, I do not blame you one iota for being depressed about this!!! That was my worst fearāstarting a biologic and it not working. You have every right to be feeling down! I get down just thinking about it!!!
I wish you didnāt have to wait 3 more weeks to get Enbrel, but then maybe itās also important to be fully over the allergy. IDK if I could take PsA pain anymore like I had 4 years ago. I think Iād rather be dead.
Your art is amazing!
I stopped drawing awhile back when my hands hurt so bad. Now I canāt go back to it at this time for a few reasons. One is my left eye gives me tons of problems when I look at anything for too long.
Hang in there, Kath! So sad for you!
Ahh thank you @Grandma_J. Iām now scared that all biologics will cause an allergic reaction and Iāll be back to Methotrexate . My disease is so active that I started flaring as soon as I missed my second injection. Youāre right though about the 3 weeks wait, painful though that is. Is your eye problem a side effect of biologics? Iāve read some pretty scary stuff about what they can cause, even though they relieve the PsA. I sometimes think we canāt win with this disease xxx
Hi Kath, how are you doing?
Itās so often said that finding the right treatment involves trial and error, but your recent experience has taken that to a new level, what has happened does sound really frightening. I too would be feeling down about it, and very apprehensive about trying another biologic.
It must be extremely tempting to avoid biologics. However it sounds as if your rheumy team are being vigilant and considering everything very carefully, do you feel fully supported by them in moving on to Enbrel? The degree of trust must be a key factor, I should think.
I think you are someone who fully appreciates that PsA is a progressive disease and its progression can be devastating. And that is where the biologics come into their own - as the drugs with the proven track record of slowing down the disease. If I was in your shoes at the moment, Iād probably be making a lot less sense than you! But ideally Iād hope that Iād also hang on to this fact about the nature of the disease and the role of biologics in slowing down its potentially crippling effects. Iād want that uppermost in my mind and Iād want all and any questions answered by rheumatology too.
Iād guess the likelihood is that what has happened was a one-off ā¦ is that what your rheumy thinks? The bios are so often pretty much side effect-free. Itād be lovely if, assuming you do go for Enbrel, that that is your experience.
I have to say I have never seen so many posts on here speculating, fearing, potential side effects of bios as there have been of late. There is a lot of speculation for sure and I wonder what effect that may have. What you have been through was all too real and of course it comes on top of the pain and anxiety associated with a recent diagnosis. Itās no wonder you say that we canāt win with this disease. Well I havenāt won the war, thatās probably never going to happen, but there are very few battles these days - and thatās down to the biologic. I very much hope that is how things turn out for you.
Hi Sybil
Thank you so much for your very positive and encouraging reply, and your understanding. I have a fantastic team supporting me at the Freeman Hospital, and Iām very trusting of them, especially my Consultant. Heās the best! I donāt think for one minute that heād try me on another biologic if he thought Iād be harmed by it. Hopefully, as you say, my reaction to Humira was a one off. The order is in for my prescription of Etanercept- not Enbrel but a Biosimilar called Erelzi. Fingers crossed xx
My fingers are crossed for you too Katie, you have such a wonderful outlook on things despite what has happened, and Iām very glad you have a great team supporting you
Thank you @Jen75 I try to stay positive and Iām always looking for ways to help myself too. Iāve just had my root hair analysed and the results are very revealing! Iām still digesting it all but will post something soon! xxx
I just went to check out your artā¦ thatās amazing! I love the field of poppies one! And the one after thatā¦ I forgot the name but itās another field of flowersā¦ I love the colours and the ālightā
Iām sorry youāre having trouble painting these days! I hope youāll be able to pick it back up soon!
Ah thank you Cynthia xx
I know exactly how you feel Katie, I have been on Remicade Infusions for 9 years and now I have what they think is Remicade Infused Lupus, along with developing Raynauds disease. Been on Prednisone for 2 weeks so far and must stop the Remicade. My Rheumatologist is baffled and sending me to the Mayo Clinic for evaluation. He has heard of this, but never seen this before after 30 years of practicing . I feel your pain and frustration. I have been through it all for close to 40 years so hang in there. If I didnāt have my pain meds to rely on I would go mad.
Good heavens. The drugs are worse than the disease sometimes! Good luck! X