Went to artheritis clinic today .i need to have a moan !

[Twinkly]

Hoped to get a new drug but I was turned down because my blood counts are irratic again .,,,now for the good news ,,as compensation I got a big steroid injection in my Derry air ....tum. Tee tum. Life's not so bad ...here I go again !!! Twinkly xxx

[Nickthedevil]

Hi Twinkly hope your counts settle so you can try the new drug, but in the meantime I hope the injection helps. I am due to have one in my foot and ankle in two weeks time, I am sooooo hoping it helps - sometimes they do, sometimes they don't!

Karen x

[Hidden]

Love the picture, hope your bloods settle down so you can get the new drug

Love Caz x

[lizzziep]

Sorry you couldn't get the new drug. Do you know what it as called Twinkly? I have severe arthritis, especially in my knees and really need 2 replacements but haematologist advises against operations due to the ET. GP says just take paracetamol or codeine, which don't really work. I have had steroid injections in them previously which work brilliantly - but only for a couple of weeks. I'm booked in for acupuncture in them next month to see if that helps with the pain.

I'd love to be able to take my dogs longer walks, but find walking very painful. Now one of my dogs has come out in sympathy with me, she has arthritis in her front paws!!

Oh the joys of getting older!

X

[Twinkly in reply to lizzziep]

Hello you ,,here's the name of the new drug ""leflunomide""but it's dodgy for us ,,it is one you need a good liver ..and needs close monitoring ..bloods every 2 weeks to start. Progresses on to 4 weeks checks ..it gets into your system and it stays 2 years ,unlike methotrexate that clears out quicker and does a similar job . I took that horrid drug for 5 years ,,I'm not on it now because iv been on the Majic trial so it was limiting ,,this lady doctor I saw said I need a MRI scan first ,to see if my artheritis is active right now or quiet .

She should be in my bedroom in the morning when I'm trying to get dressed ,the air is blue !! Nothing's quiet I can tell you ..I'm so glad to get replys from my posts ,,I think we need to chat and keep in touch .its good for us to bond .we all need someone to care and understand. Now and then ,so drop me a line anytime ..I'm a good buddy Im the one in the white Stetson !! ..trot on trigger .....Twinkly x

[lizzziep in reply to Twinkly]

Thanks for that info, I'll mention it to the doctor next time I see him.

Know what you mean about getting dressed! I haven't had a bath for years!!!!!!!!!! Can't get in and out - yes I have a shower!! I'd love to be able to wear some fashionable shoes instead of frumpy ones. Although it's probably the shoes I wore when young that caused my problems!!

XX

[Twinkly in reply to lizzziep]

Try sketchers ,I wear their ""go walk ". Great ,so light and so soft ,come in fab colours ,from the USA .buy on line ,it's easy .you can phone if you can't understand to order ..,don't ever be frumpy ,come on girl get with it ,only as young as your dreams my lovely ..xxxx

[lizzziep in reply to Twinkly]

Thank you. I've got some Hotter shoes, they are comfortable and don't look too bad. I have very wide feet, could do with a pair of barges really! I had some Skechers trainers but I've worn them to death now. It's bending down to fasten them that's often a problem. Maybe I need servants to help me!! Lol. X

[light in reply to lizzziep]

Hi, I am with ET, JAK2+ and year ago I had total hip replacement and all is good. Glad I did it, I was not able to walk at all. Had to use crutches.

Wishing you well

[lizzziep in reply to light]

That's brilliant, I know I'll have to have replacements eventually, but want to put it off as long as possible. X

[Helpatlast]

Feel for you Twinks a disappointing appointment throws us down a bit doesnt it (i alwayz have to buy a handbag in the hospital shops - i have bought a few) - hope very much you will now be feeling some relief from pain from the injection treatment - hugs to you and the beautiful doggies. X

[Aime]

Sorry to hear you can't have the meds but be positive that your counts will settle down. Steroid injections are not very funny but are usually worthwhile. Great picture, take care Aime xx

[Loubprv Volunteer]

Bloody Nora, what a blooming horrible nuisance you poor thing.

What else can I say except, thinking of you and sending happy get better vibes down the airwaves or whatever it is our iPads work on!

xx

[Twinkly]

Stop that Louise ! You know I'm doing o.k. ..look at my best buddy Byron above in the picture at Paignton champ show last weekend !! He's my junior handler ,he does the running for me ..I'm blessed with the best mates and have a great life ! Xxx

[piggie50 in reply to Twinkly]

I wish I'd known you were in my neck of the woods Twinkly. I would have come and said hello!

Judy x

[Helen1952]

I have to say that if the air is blue when you're getting dressed its worth it you always look fab ! .

Agree it's nice to have people who "get" how you feel .

Love your positive outlook .

Helen x

[Hidden]

Hi Twinkly

Have to say agree with Helen, you look fab. It's a great picture. Though as we often say sometimes we look fine but that's not how we feel, and we need a bit of a moan when we have a disappointment or set back.

I hope that your counts settle down so that you can try the new drug next time. in meantime hope the injection in the derriere is doing it's thing and helping with the pain. Luv & hugs Lizx

[Twinkly]

Thank you ladies !! I'm one of those east Enders ,so I suppose ,it's in my DNA ,to dress up and look good . Just takes a bit longer these days tho ....but it's important to look good and feel better !! Builds confidence ,when we get a knock !! Xx

[Paul42]

Hi

I read online that methotrexate is being investigated as a potential to treat MPN's as is a JAK inhibitor.

Has that ever been mentioned?

Paul

[Twinkly]

Well what can I tell you ! I was taking that drug methotrexate every week to ease my artheritis ..I developed PV 4 years ago .jak Poss ...now I have just been told I have moved on to full blown mylophybrosis ..I am now taking ruxolitinib ,as my spleen is beginning to grow .very slowly ,, I would question the use of methotrexate myself . Wouldn't I ?? It's all in the lap of the gods maybe ?? Twinkly ..

[JediReject]

Ay Up Twinkly, ,At first I thought you put you were getting a 'new dog' till I put my spex on. . I am sorry to hear that you had to suffer the indignity of a nasty injection in your east end, no lady ought to endure that, be sure to wear your carbon fibre Sloggis next time they're needle busters . .

I know you won't let this minor setback dampen your spirit in any way and I wish you all the very best with your counts. . . By the way if you're feeling a tad tired you surely needn't walk your beautiful canine you can simply saddle him/her up. Love to you JRx

[Twinkly]

Hey you j,r, I'm not worried about those injections in my padded areas ..ill have you know .big b #ms. Are very in fashion just now !! Some celebrities are actually having implants ... Those bussels are so the fashion as well ,,so I say if I can get it on the N.HS ....go for it girl !!! Keep twinkling ..xx

[linds]

Hello Twinkly,

I must have missed out somewhere down the line as I did not realise you have joined the mylo gang. Well anyway wishing you all the very best of wishes. I was diagnosed just before coming to your meet last year and stated the Rux then - for me, so far, all is good with spleen behaving.

Linds x

[Twinkly]

Hi Linds ..I was told after my third bone marrow test .that I had moved on ,only 3 weeks ago .it was confirmed at my hospital visit.its no longer P.V . But it's progressed to mylophybrosis .. My spleen has moved from 15 m on to 18.5 ,

Don't sound much ,but it's enough to take me off the Majic trial ..at first of course I was tearful . It kinda knocks your world ! I'm o.k. Again now ,,determined not to waste a minute , eating and drinking healthy .convinced I will be better for it ,,feeling o.k. Twinkly. Xx