Had my second das score done today and I will be starting on the new JAK S inhibitors.
It's been full of ups and downs these past few years. Hopefully now things will improve.
Unfortunately pharmacy didn't have any of the drug in stock but hopefully in the next couple of days. I can stop the sulphasalazine and hydroxy and just stay on the mtx inj Naproxen and low dose prednisone. Hope to come off that soon if no when this new drug starts to work. That will be 7 tablets a day less :).
I was amazed I could have started it today.
Got to go back to clinic in 6 weeks.
It's my birthday in a couple of weeks it feels like it has come early. The Nurse said one of her Patients had noticed a difference in 3 weeks.
Written by
moomie
To view profiles and participate in discussions please or .
I looked up as I hadn’t heard of this drug and noticed it’s a new drug that’s been approved to use in the uk. I may ask about it on Thursday as seeing Rhuematology research team for the titration study which I’m just over half through.
I’m in Greece until tomorrow. Weather is just right for me.
Greece sounds wonderful and some warm sun. We have not been abroad for 10 years due to no dog care.
The drug sounds promising do ask about it. Our Nurse is research based mainly. I couldn't believe how quick it was sorted. Saw he 5 weeks ago flaring and she looked at options. Thought this would be ideal. She did my das score and sent me for all the bloods and had a word with the Dr. Yesterday I went back for the second scores and she said I qualify and gave me the prescription there and then.
Good look le t me know how you go on. Enjoy the rest of your time in Greece. I go to Northumberland on Saturday. It will be a bit chilly but refreshing.
Some quality time spent with my daughter who lives in Dubai. Is here for the week as it’s half term in Dubai. She’s a teacher.
Went to a lake that has several minerals like zinc sodium potassium. It’s said very good for muscular skeletal problems. So hoping this helps. Also it had the fish that nibble your feet. I only paddled didn’t bring my cosy but hope it helps.
Thank you nmh. Cannot believe how brilliant this Nurse has been. Saw her for the first time mid September. Yesterday I was worried been there before with the high das scores and the Consultant didn't ok the biologics 2 years ago. She did the first score 5 weeks ago sent me for all the blood work. Yesterday did my scores again. Boy did it hurt but good I suppose. That was it she said yes you are having it. Asked about Dr approving and she said you are way over 5 and you qualify.
So looking forward to hopefully manage without steroids and do more. Football well I have hung my coat up regarding running the Kop but they are letting me do things to suit so I can still be there. Got lots of hugs on Saturday from supporters pleased to see me there. I think the way the team are playing give me a couple of months on the new drug and I will play up front as a striker ! Lol
Yes, you've been more fortunate this time, or they recognised you've been close before but of course you've to hurt like billy o to get there, so you got there on your own merits so to speak!
That was nice of the supporters, you've obviously been missed. Nice too they're letting you do what you can though.
I'm not too bad thanks for asking. Oh, except last night started symptoms of a cold & had a broken night's sleep with a dry cough. I'm drinking plenty of hot lemon & honey to keep my throat coated which seems to be helping. Got a rotten headache though, you know the type, congested & vice-like so hoping a lie down will ease it somewhat. H still no change, acupuncture not working so down to see the head honcho at the Pain Clinic again & being re-referred back to Cardio. We had a double appointment this morning with the new Practice Nurse, me drug monitoring him disgusted blood plus potassium & magnesium & she said she'd never seen anyone in such pain & wanted him to see one of the doctors straight away, until we explained the situation!
Enjoy your break in Northumberland. We've had visiting squirrels, they're after the bird's peanuts. Freya's transfixed by them, Annie stalks & chases them but they're too quick for her thankfully! x
Poor thing I hate the congestion headaches. I use one of those sticks to rub on temples. Hope you can get some sleep tonight.
I feel like dropping off now but got a match. A little boy who was a patient at the hospital comes to see me. I promised him sweeties for Halloween.
They have been good. I am supposedly in charge of the disabled area so not a lot to do. Socialise and welcome.
Your poor husband has been through the mill. Do hope he can find some relief. Have you looked into this cbd oil or vaping it. I discussed it briefly with this new Nurse. She said a lot of people have had good results in clinical trials.
Oh squirells Keegan is obsessed with them he screams and thinks he can climb trees. Hope the girls are well.
Keegan has been doing really well at dog shows recently. Tottie is getting very slow now but happy and content.
Looking forward to Nothumberland but not the drive up there. Going with a friend and she doesn't drive.
The weather looks ok so will be nice and blow the cobwebs off.
Sorry Moomie, missed your reply. A combination of Vicks & lemon/honey drink, co-codamol & amitriptyline ensured sleep thanks!
We have looked into CBD oil but not taken the jump yet. He rightly thought he owed it to the Pain Clinic team to see what they came up with this time & he's intending to discuss it with the main man, depending on what he offers. I forgot to mention his GP has prescribed him an anti depressant (off license) which is playing havoc with his BP & heart rate so sending him dizzy but he's persevering for now. He sees her tomorrow for a review so we'll see what comes of that.
I'll have to push on, have an OT appointment at 10 (hands) & sitting here with wet hair! Pleased Keegan's going well at dog shows, give Tottie a cuddle from me. Take care. X
I do hope they can sort something out for him, it's been going on far too long. I did try the oil and put it under my tongue. Only used it before bed because I couldn't sleep pain waking me up. I did feel a lot more relaxed and slept better.
Pleased you had a good night with the cold.
Good luck with O.T, do you have gloves too ? I find them helpful but hard to get on and off.
Keegan has just won an online show 1st fancy dress and champion best in show. Tottie got 1st Veteran and 1st Naughty dog. Sent in a photo of her with her head in my bag. Little money can open my rucksack sticks her head in and pulls out a packet of treats. She then tears open the pack and eats them if I don't catch her. Little monkey, but at 15 just pleased she still wants to get up to mischief. Xx
Pleased the CBD is helping you, where did you get it from if you don't mind me asking, & what strength did you start on? Pm me if you prefer not to say here.
No I don't have gloves, I've enough to cope with with 2 splints to be honest! It's mainly to build up strength in my hands due to OA but I've not done much since my last appointment because of CT symptoms. She's now given different exercises specifically to help ease the CT & I'll see her again 8th Jan.
Well done Keegan, Tottie too! 15 & still up to mischief! She sounds like Freya, she's a chancer & we've to be careful where we keep treats otherwise she'll eat them all then be sick, yuk. Cheese is her big steal, the stinkier the better. x
Sorry I have been to fat club then took my car to be valeted.
I got the oil from Holland and Barrett. Spoke to a chap at a shop that sells e cigarette. He was very good and knoweledgable about it. They only had one type. Just looked and it says 2.75. I don't use it all the time. Find it does help with sleeping. I do still get pain but I can feel my body more relaxed. I thought it would help with the osteo in my back. Just have 3 drops under my tongue on 2 occasions before bed. My Nurse said it does help with muscle spasms. People with M.s have had good results.
Hope O. T helps. I have splints and find them helpful. She gave me gloves to sleep in and short ones to wear during the day if needed.
Gosh if Freya and Tottie met there would be chaos. Tottie loves cheese as a pup not as bothered now. She adores pet munchies. They do duck drum sticks which are her favourite. They are U.k made so safe.
Just sneaked Keegans well one of many soft toys in his holiday bag. He likes to get them out again.
Have a look at Holland and Barrett and see what you think.
Many years ago at work one of the anaesthetic consultant s told me to try a brown cafe in Amsterdam when we went for the weekend. He said then it would do me the power of good. I didn't but often wondered. At least this is safe. That's why I went to Holland and Barrett.
Thanks Moomie, I'd looked at that one, basically because it was the only one I could find that you could find in the shops & ask advice on. I think once he's head man & if there's nothing else available to him that won't send him gaga we'll plump for that one. Pleased to hear it helps you just enough, that's been my concern because he hates the feeling of not being in control which he feels fro things like Oramorph & similar meds.
My splints go quite a way up by arm & the Velcro catches on my clothes so I think I'll ask if the shorter ones like yours would be suitable for me, I'm sure they'd be easier to work with too. Mine are limiting too particularly when gardening, but then that's their purpose!
I love that you also have a holiday bag for your two, we do the same! They're toys (for they're read Freya's!) are kept in a basket in dining room but that doesn't stop her taking them all out to find that particular one she wants to play with!
I've heard of the coffee shops in Amsterdam. My hairdresser went there last year & 'experienced' them. Her partner has a problem with the vertebrae in his back & apparently it was a very 'relaxing' break! x
Anything is worth a try. He doesn't want to feel wiped out all the time and unable to go about his daily business.
My G.p wanted to see me this week and we chatted about dogs. He said you can give them tramadol. I wouldn't fancy giving it to Tottie.
Oh the cafe's we went in one and had a lager and people watched. It was an experience. Problem was you sat on low seats with goat skin rugs on. I couldn't get up !
Isn't it strange we are so guarded against this cbd oil but take loads of other drugs.
T and K are following me around now so I don't sneak off without them.
My car will be full of their luggage.
Have a good weekend. Let me know how he goes on xxx
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Can anyone offer info about the anti tnf Cimzia please?
What part of social distancing do they not understand???
Light at the end of a long tunnel
At last the day has come :)
ahhhhh - Sciensus and hospital
