HERE WE GO AGAIN!!!

tillytop

Hello!
I posted a few days ago with a question about stopping Humira - following allergic reaction and I had been told I culdn't be seen in anti-tnf clinic until 19th June (7 weeks). I had a number of replies to my post - thanks(!) so thought I would just give a quick update.
Anyway, long story short, I was offered an appt with Rheumy nurse today and took OH along for moral support (he was brill!). But upshot is that consultant wants me take a 12 week break from all RA medication (excecpt anti-inflamms and steroid injection if (when) desperate "to see what happens" with my health. He still doesn't seem to accept that my poor health over the past year has been due to Humira side effects :roll:
So, having been worried about waiting 7 weeks, I now have to sit it out for 12 before I get to find out if I can have a third anti-tnf! I have often wished I could take a break from all the meds - but, as they say, be careful what you wish for!!! Ho hum - better get those lettuces planted while I still can! Thanks all for listening - knowing there are others in the same boat really helps.

frogmorton

Hi Tilly

OMG!!!

Bet you are scared.

Well done for getting the information and getting OH along as backup.

It will be interesting for them to see what happens minus ALL meds, but for you?? very scary. If you need someone to chat to we will be here.

Get your lettuce in - mine already are
LOve

Toni xx

dreamdaisy

Hello Tillytop. You're right, plant them lettuces 'cos I fear, my dear, you may be in for a rough time. I had to stop all meds after Enbrel threatened to destroy my liver, and I went thro the most miserable time with my PA ever. Everybody is different, and just because I had a rough time doesn't mean that you will - and I sincerely hope you don't. Pace yourself, rest plenty, eat well, don't stress and good luck. Keep us informed about how it's going. Dreamdaisy.

tillytop

Hi Toni and Dreamdaisy.
Lettuces are top of list for tomorrow! I keep thinking of "things to do while I can" but maybe it won't be as bad as I think (trying to think positive!). On the bright side, Humira allowed me to cut right back on my other meds anyway, so not as if I have been relying on those over past two and a half years. And luckily I am not working at moment (had to stop last July due to health) so at least I am not worryiing about keeping work going as well.
Thanks for your replies - I am so glad I discovered this forum last week. Hopefully I will be able to give others some support too - cos we "arthurs" certainly need it!
love Tilly

dreamdaisy

Hello Tillytop. I think one of the worst aspects of arthritis is that you never know how you're going to be, day to day. We are supposed to be going to a suprise birthday party next Sunday but I don't know if I'll be up to it. Currently throwing up on a regular basis due to high pain levels and that don't put you in a party mood! You are right to stay positive - difficult at times I know - but you now have a bunch of people supporting you, who know what it's like. I only joined last Thursday and I'm so glad I did. Have a terrific lettuce-planting Tuesday. Regards, Dreamdaisy.

frogmorton

Hi Both

I make plans....

for a long time I didn't....

I would say..."I'll try to be there" and not expect to be, but now I say "love to" and hope I am there. Much better to be that way than give up eh?

Are the lettuce in?? I hloope they are going in today Stick some net or something over them so the caterpillers and butterflies dont nick them and then - if teh worst comes to the worst - you can chuck a bit of water on them - then in time we can eat them

We will have acheived this year won't we???

Love

Toni xx

tillytop

Hello again both - and thanks so much for your support!
Didn't log in yesterday as feeling a bit blue but better today.
Dreamdaisy it sounds as if you are having a really awful time at the moment and I really feel for you. I so hope you make it to the party and are able to enjoy it.
Toni, I like your positive attitude to making plans. Like you I get really fed up with having to say "I'll come if I can" or "go ahead and plan without me and I'll join you if I am able". So I'm going to try your way now cos even if the outcome is the same I'll feel better about it in the meantime!
Lettuces are now in and covered! I've kept some back though incase they do get nicked. Sparrows are my main problem - they just pull the leaves off!!! Weather goodish today so off into the garden again. Need to sow peas and beans as running out of time. It's lovely to find some fellow gardeners to chat to - an unexpected bonus on an athritis forum! Maybe we could have a "gardening" thread on the "chit chat" forum to swap tips, successes and sparrow/caterpillar/slug related disasters! What d'you think?
Love TillyX

skezier

Hi Tilly,

I'm glad your oh went with and hopefully the jabs (as and when) and the antiflams will keep you comfortable while they work out what they think i going on for you. Its funny how so many people think they know our bodies better than we do.......

Hey there are a lot of people who like/do gardening and why not start the thread cus I know a lot of people grow things. I used to have a market garden but no machinery :roll: Had to stop cus I don't bend so well and it was too much...... now I grow grass and watch things eat it Hey my biggest problem (apart from murdering sheep and horses ) was rabbits and slugs! Its was a nice way to earn a living. You take care ad fingers crossed for your lettuce. Cris x

tillytop

Thanks for your post Cris. I'm doing well so far thanks and I think you're right that docs forget that the "patient" knows more than anyone about what's going on.
Market garden sounds brill but hard work if the bones don't want to play - specially without machinery! But hey - at least you're still growing something - even if it is only grass!!! I will go and post a gardening thread in a min - thanks for the encouragement. Tilly

skezier

Hi Tilly,

Y go post flower cus there are a lot of people who love gardening. Hey it was hard work but actually a decent income.... watching things eat the grass is wonderfully a well cus my lodgers are mostly in foal so I get he maternal boost now Glad your going to post. Cris x

tillytop

skezier wrote:

Hi Tilly,

Y go post flower cus there are a lot of people who love gardening. Hey it was hard work but actually a decent income.... watching things eat the grass is wonderfully a well cus my lodgers are mostly in foal so I get he maternal boost now Glad your going to post. Cris x

Thanks Cris - just posted "Anyone for Gardening" on the ChitChat forum so look forward to seeing you there! Off out into my garden now while the sun is still shining. TillyX