GRRRRRRRRR!!!!!

tillytop

Rant coming - hold on to your hats!
"So", they said "Humira will "stay in your system" and "you will be fine" without any RA meds for the next 12 weeks (barring NSAIDs and the odd steroid injection "IF you need it"). Yeah, right. So, here I am, three and half weeks later, back to taking until lunchtime to get up and dressed, taking the max dose of NSAIDS I can take and having to sit on my hands (metaphorically - actually would be too painful!) to prevent myself raiding my stash of steroid pills. And the best part is knowing that this is just the beginning. Oh joy of joys!!! And, to add insult to injury I have just had to speak to a very stroppy GP receptionist who wouldn't give me my blood test results. Whose blood is it anyway?!!!
On a positive note though my manic itching is definitely subsiding and I haven't had a major coughing fit since Sunday (non-stop for almost 2 hours). GP appt tomorrow to request antibiotics to clear the suspected long-term chest infection and to find out if my liver function test is back to normal - then at least it'll "just" be the raging RA to manage for the next few weeks. Ho Hum.
Thanks (to anyone who stuck out to the end of my rant) for listening. Feel better now I've got that off my chest. Off into "our" garden now to see what's happening as not been out there for couple of days. Tilly x

snowball

Hi Tilly sending gentle ((((hugs)))) will you be going back on your ANTI-tnf :?: they have stopped mine ( rituximab) because its stopped working :roll: they are supposed to apply for funding for a new drug but its been nearly 2 months, I did ring them a week ago and rheumy nurse said she would look into it and get back to me, I'm still waiting. They have taken me off my leflunomide too due to high bp, so all I'm taking at the moment is 5mg mtx pain meds and diclofenac.

Julie xx

tillytop

Thanks Julie - gentle hugs received and much appreciated! Once Humira is properly out of my system, the suggestion for me is either Enbrel or (I think) Rituximab.
Sorry you are having to wait to move forward with your next drug and having to struggle with limited meds in the meantime. Are you going to ring again to follow up? I have found that the only way to get action is to make a real nuisance of yourself – difficult if that’s not your natural disposition and even harder, I find, when you are feeling really unwell.
I think I remember from one of your previous posts that you were taking Humira previously and, in a min I will send you a private message cos I’d like to ask you a couple of questions. Hope you don’t mind.
Meantime gentle hugs to you too and hope you can get a response from your rheumy dept soon so you at least know what’s happening.
Love Tilly xx

theresa4

HI

Just a bit confused if HUmira stays in your system 12 weeks and you cant take two biologics together then why did I get given Enbrel 1 weeks after my last humira injection? and 1 week after my final enbrel I was given my abatacept infusion which stays in system for 1 month (you take it monthly) then I am due to start certolizumab next month. It seems really weird that they would say its in your system for that long yet have no problem in giving me and others new biologics earlier? IS it due to your blood results?

Hope you get sorted soon
Love Theresa x

tillytop

Hi Theresa and thanks for your post.
Prob for me is that I have been really poorly for past year or so with what I believe have been Humira side-effects. Rheumatologist is still not convinced (despite me having so many of the listed Humira side effects and all other medical investigations having come back normal) that Humira is the cause, so he wanted me to stop everything bar NSAIDs and possible steroid injections for 12 weeks to give it a proper chance to get fully out of my system. Plan is that this will show once and for all whether Humira is the culprit. When, at my appt, I said I was worried about how I would manage for that period of time I was told that because Humira takes time to "wear off" I would see the benefit for some time to come. (I wish!)
Love Tilly x

snowball

theresa4 wrote:

HI

Just a bit confused if HUmira stays in your system 12 weeks and you cant take two biologics together then why did I get given Enbrel 1 weeks after my last humira injection? and 1 week after my final enbrel I was given my abatacept infusion which stays in system for 1 month (you take it monthly) then I am due to start certolizumab next month. It seems really weird that they would say its in your system for that long yet have no problem in giving me and others new biologics earlier? IS it due to your blood results?

Hope you get sorted soon
Love Theresa x

Hi Theresa I'm waiting to see if I have funding for certolizumab, if they have not rung me by friday Tilly I will ring them back.

Julie x

skezier

Hi Tilly,

Oh flower sometimes this is akin to pushing a steam roller up hill, with the handbrake on. I really hope you will start to feel better once you have the antibiotics and well all I can do is leave you a ((((( ))))) and put a cuppa on the bench in the garden for you. Another ((( ))) and a hope for a better tomorrow. Luv Cris xx

tillytop

Thanks Cris - and thanks for the cuppa! I like your analogy of the steam roller - might try that one on the doc tomorrow if he's awkward about the antibiotics! Why is that docs seem happy to throw pills at you (or me anyway) for the slightest thing - but when you really need something....? Oh well. Hope you are doing ok all things considered! Love Tilly x

annie_mial

Tilly lots of ((((((((((())))))))))) coming your way from me, I know exactly what I would feel like if I had to stop all meds, doesn't bear thinking about!

Annie
xx

ironic

Hi Tilly, So sorry you are still having such a bad time of it.
They really should be helping you more than they are flower.
Sending good vibes and wishing you well at Dr's appt.

Lv, Ix

mummyb

Hi Tilly, sorry you're suffering so much here are some hugs for you and a sprinkling of fairy dust to make you feel better ((((((((xxx)))))))), Brenda

shazzie39

tillytop wrote:

Thanks Cris - and thanks for the cuppa! I like your analogy of the steam roller - might try that one on the doc tomorrow if he's awkward about the antibiotics! Why is that docs seem happy to throw pills at you (or me anyway) for the slightest thing - but when you really need something....? Oh well. Hope you are doing ok all things considered! Love Tilly x

Hi Tilly
So So sorry you are battling for some sense. If it helps I am also having problems with my treatment team!. I started MTX 8 weeks ago after my first consulatation with Rheumy. I had a review last week where I asked what more could be done. He assumed I had Anti-inflams despite having my record from the first visit. He then gruffly mumbled he would write to my GP to prescribe some to me. I saw my GP yesterday and not only has he not received any info from Rheumy about my being prescibed MTX(8 Weeks ago) but he had not received anything about anti-inflams. I had to "guess" which one I thought Rheum had mentioned and to my horror the Pharmasist called me into a side room to query the meds. He was horrified that they were presribed without proper checks and has advised me to contact the Rheumy team today before taking anything other than my MTX. Some times it feels that nobody is listening!!! Does someone have to be seriously injured or worse before they "Treatment Team" get it together? Sorry to rant but it makes me so angry when we are not listened to. I hope you get some sense soon and the right meds!
Hugs
Shazzie

sharmaine

Hi Tilly

Sending you lots of sympathy. Rant away! I don't know much about RA but it does sound very frustrating. I often wonder what all these meds they keep getting us to take! OA is bad enough but can understand why you're feeling cross.

Warmest regards
Sharmaine

tillytop wrote:

Rant coming - hold on to your hats!
"So", they said "Humira will "stay in your system" and "you will be fine" without any RA meds for the next 12 weeks (barring NSAIDs and the odd steroid injection "IF you need it"). Yeah, right. So, here I am, three and half weeks later, back to taking until lunchtime to get up and dressed, taking the max dose of NSAIDS I can take and having to sit on my hands (metaphorically - actually would be too painful!) to prevent myself raiding my stash of steroid pills. And the best part is knowing that this is just the beginning. Oh joy of joys!!! And, to add insult to injury I have just had to speak to a very stroppy GP receptionist who wouldn't give me my blood test results. Whose blood is it anyway?!!!
On a positive note though my manic itching is definitely subsiding and I haven't had a major coughing fit since Sunday (non-stop for almost 2 hours). GP appt tomorrow to request antibiotics to clear the suspected long-term chest infection and to find out if my liver function test is back to normal - then at least it'll "just" be the raging RA to manage for the next few weeks. Ho Hum.
Thanks (to anyone who stuck out to the end of my rant) for listening. Feel better now I've got that off my chest. Off into "our" garden now to see what's happening as not been out there for couple of days. Tilly x

snowball

Hi Tilly hope it went well at the docters, sending more gentle ((((hugs)))).


Julie xx

tillytop

Thanks all for your kind messages - sorry not posted sooner.
Docs appt went surprising well thanks Julie - and thanks for thinking of me - and for the hugs! Much appreciated. After all this time the GP I think finally believes that all my probs over past year or so are Humira related and was very supportive - probably first time ever! He thinks that all the itching and coughing are down to the fact that my immune system is now "waking up" after being suppressed for so long, so I am developing sensitivities which were not there previously. Doesn't think I have a chest infection, but more of a wheezy, allergy type thing. Has given me an inhaler (not steroid one) to use for a bit to try to clear my chest. Just got to learn how to use it - my co-ordination is not that good at the best of times. Itching still much better so I think things are improving. Can't see properly again today though - first time for a few weeks which is making me cross but I guess that this is probably just another thing which will take time to wear off. Stiffness much better last couple of days - after being pretty immobile earlier in the week, was out digging - yes, digging (!) in the garden for 2 hours yesterday. Don't really know what's gooiing on there. Not such a good day today though - overdid the valium at bedtime yesterday and feel as if I have a hangover - have slept most of the day. Oh well.
Thanks again. Tilly xx

snowball wrote:

Hi Tilly hope it went well at the docters, sending more gentle ((((hugs)))).


Julie xx

dreamdaisy

That sounds a little more positive, Tillytop. At least he was more sympathetic and helpful. I hope the new meds help the breathing, sneezing and coughing in due course. Thinking of you. DD