HI sorry feel like a bit of a user

theresa4

It seems I'm not offering much advice back on here lately but yet here am I again typing my woes. Sorry I will eventually feel I have something to offer the rest of you

The new drug Cimzia (tocillizumab) with MTX was working well (I was mobile in pain but ok) for my RA except constant tiredness and continual ear nose and throat infections. 5 weeks of antibiotics and no MTX and the infection has subsided (finally) but my joints are worse than ever and now even back on MTX with the cimzia isnt helping and I am back to being in severe pain and minimal mobility. Accidents too many and managed to slice the top of my knuckle 5mm deep so have had to immobilise my middle finger which as you can imagine is not good for RA :shock: Although amusing when I hold my hand up :oops:
Not to mention the constant sweating (underarm, back, neck, forehead to a point I cant wear anything other than black for embarrassment. (due to Cimzia)

Why is it one thing works and somethihng else screws it up. Im so peed off, I dont sleep properly, the pain relief makes me dopey and the pregablin leaves me fuzzy I wonder If I will ever be able to get a job again and feel useful.
My grandaughyter is now too heavy for me to hold although my daughter places her on me and helps which is nice but unfortunatley at 10 weeks she wants to stand which I cant do. I hate arthur I want my independance back. I have tried to stay positive, the rheumy is so happy as the cimzia worked on reducing the joint pain but didnt stop to consider the other side effects on me and my life. Its still restricted through the drugsn and I am constantly tiresd. He was just pleased his trial drug was showing a positive! Im not just a subject Im a person who wants a life back.
Well I think thats enough Ive ranted enough thankyou for the space to let theings out.

Much Love
Theresa

speedalong

Hi Theresa,

I'm not surprised you are feeling fed up. So the cimizia was working - but isn't working anymore? It's side effects were bearable when it was making you more mobile? If it isn't working any more then you need to see the rheumy and discontinue it - the benefits have to balance the risks/side effects and if that is not the case - then it isn't worth it.

Your grand-daughter sounds a lively minx! You will have to bagsy all the sleepytime cuddles or have a hug after she has done lots of standing and jigging on someone else.

When is your next rheumy appointment?

Don't worry about not posting much advice, we all go through phases of needing support alternating with being able to support others, you can do the latter when your RA is under better control again.

Speedy

dorcas

Oh Theresa

I am so sorry to hear about your rollercoaster with Cimzia, Mtx and all the pain you're in.... not to mention the infections.

what is your doc saying about the balance of your meds? does he feel there are things that should be changed?

I know you've said rheummy was happy about the results of the Cimzia... was that before your joints became so sore again? perhaps a call to rheummy is needed to review just what is/ is not working. :roll:

Tilly pink had bad results from Humira but it took months for her to get that acknowledged.... see her post 'vindicated'.

It is soul destroying not to be able to hold your grandchild.... I know that feeling all too well. but we do what we can .. when we can...and show love in other ways.

I do hope that with the right balance of meds this could change.

I'm glad you felt able to post again... please know that we always want to support you.

(((hugs)))

Iris xxx

theresa4

HI thanks for your reply
The cimzia worked a bit and I could walk without support as long as I dint push too hard. Still in pain but much better. The side effects of feeling sleepy and sweating were there but I thought Id give it time to see 1 if they wore off and 2 the cimzia continued working.

Now it doesnt seem to have kicked back in I think It worked well with MTX but the delay in having that has made the effects wear off. Maybe in time iot will improve again but then maybe the infectiuons will start again as my immune system is more supressed. I dont know what to do its not like I want to go out when Im constantly sweating its very enbarrassing the back of my hair gets soaked 4-5 times a day not to mention how wet the rest of me gets. even if Im cold. Im worried that the rheumy will drop me from any nerw trials if I say this is nopt workjing for me (as in the side efects of sweating and infections and tiredness). please excuse the spelling the pregablin is kicking in.
My next appoiuntment is 5th October

Theresa x

dorcas

This is so difficult for you Theresa...

... these side effects sound extreme and surely no-one could be expected to cope with them long term. :roll: :?:

I can understand why you are reluctant to say to your rheummy (too soon) about the effectiveness / or not of the cimzia as you don't want to be taken off the trial if there is the chance of things settling.

You are in a bit of a catch 22.... waiting to see if restarting Mtx with the Cimzia will work but worrying about risk of infection and side effects if you do.

Meantime can you be given anything to address the side effects?

Your health and treatment is not just your responsibility.... your doc and the rheummy team are your partners in managing your care while on cimzia and mtx and should be responding to any significant changes...... but they have to be told in order to respond.

At the very least Theresa speak to your doc about all of this so that you are not carrying the worry of it yourself.

love and gentle (((hugs)))

Iris xxx

theresa4

dorcas wrote:

This is so difficult for you Theresa...

... these side effects sound extreme and surely no-one could be expected to cope with them long term. :roll: :?:

I can understand why you are reluctant to say to your rheummy (too soon) about the effectiveness / or not of the cimzia as you don't want to be taken off the trial if there is the chance of things settling.

You are in a bit of a catch 22.... waiting to see if restarting Mtx with the Cimzia will work but worrying about risk of infection and side effects if you do.

Meantime can you be given anything to address the side effects?

Your health and treatment is not just your responsibility.... your doc and the rheummy team are your partners in managing your care while on cimzia and mtx and should be responding to any significant changes...... but they have to be told in order to respond.

At the very least Theresa speak to your doc about all of this so that you are not carrying the worry of it yourself.

love and gentle (((hugs)))

Iris xxx

my doc is at a losss he knows how bad ive been and feels only i can decide if i want to continue x

dorcas

sometimes we need the doc s and rheummy's to give us advice so the doc saying 'it's up to you to decide' is a bit of a cop out....

after all, this is a new drug, you are part of a drug trial, and 'they' should be advising you... not just waiting for you to decide. :roll:

bottom line has to be whether the drug is compromising your health to an unacceptable degree and / or whether in 'their' opinion the side effects are transient and likely to settle... or not...

It's a decision to be taken by the rheummy in conjunction with you and your doc.

I had a reaction to Etanercept after 3 weeks of injecting ...itchy body rash and a huge drop in WBC. I did not want to come off Etanercept as it had already been showing good results but was advised by rheummy to stop. 'they' advised me.
This did not prevent me starting on another anti tnf Humira and when 5 yrs later that stopped working I've been started on Infliximab.

Theresa, see if you can get an early appointment with rheummy and discuss cimzia yes, but also all the options that might be open to you.

Iris xxx

marion1952

Hello Theresa

Just wanted to say sorry to hear about your problems with cimzia.. that sweating sounds really bad.. (a friend had similar sweating on statins )....

It is a fine balancing act with the drugs versus the infections..

Hope things improve for you soon..

Marion x

skezier

Hi Theresa,

Its nice to see you again but sorry your having such a bad time there.

I can't really add to what Iris and Marion have said but leaving you a ((( ))) and a hope you will soon feel much better. Cris x

dreamdaisy

Oh I empathise. 14 months into humira with meth, still on the oral steroids and everything else to boot. Now that you have the infections sorted, I hope the cim and meth will begin to take effect again soon - perhaps they need time to build up again in your system. I certainly hope so. Keep in touch - if we don't know that you are struggling we cannot support you. Do everything you need to do to give yourself the best chance - take your meds properly, eat well and rest well. DD

frogmorton

Hi theresa

Oh poor you

sounds arubbish time you've had - and we really dont mind you moaning - you are not a 'user'! Silly

I do hope that things stlle and am glad that you have an apt less than amonth away if things do not improve :x

Not impressed that they make you feel like a subject :x That isnt fair.

I am so glad you can hug your Grandaughter at least - she sounds gorgeous and bright - wanting to be upright!!

Take care

Love

Toni xx

dreamdaisy

Hi theresa4, are you feeling a little brighter today? I hope so. DD

theresa4

Hi all
Thankyou for all your lovely messages. Things are no better for me my joints are getting worse although I can still hobble around and my throat is starting to feel itchy and sore again which suggests the infection is coming back My mouth is severely ulcerated again and really painful when eating or drinking. if I were a horse........ :roll:

I just dont know what to do about the meds at all. I am exhausted, feel dopey, and just donright rundown. It seems that although mobility wise I am a little better the pain and feeling ill is just as bad if not worse. My appointment with the rheumy is 2 weeks tomorrow (I think its a nurse appointment but he will be around) but Im really worried about saying I dont want to carry on with the biologics despite the fact I will probably go back to not being able to walk. I think I would rather stay on MTX and periodic steroid depo's and make the best of it. I just feel like giving up today I dont feel like Im living anymore just existing in a body that isnt working. I know there are people worse off than me but maybe I have no strength left to deal with this.
I feel like a subject in a trial instaed of a person Improvement in joints is all that matters to the rheumy dept if you could have seen his face he was so happy despite my reservations over feeling ill. Will they think Im mad if I say I dont weant it because its making me ill? Even though alot of the swelling has gone down and Im a little more mobile than I was before?
I dont really expect you to answer Im such ranting to myself I think Im going mad :roll: :P :oops:
Thanks all again for your replies xx
Theresa x

dreamdaisy

You are in the middle of a very dense dark wood. This is not the time to be making major decisions about stopping/continuing. The first thing to effect is getting rid of these infections once and for all. The drugs we take lower our immune systems to such an extent that when ill it takes far longer to recover. You need to get your system clear of all bugs and you need the help of your rheumatologist/GP to do that. It was working before, and I am sure will work again, but not until you are well. Can you ask for an emergency appointment at your rheumatology clinic? My consultant has been known to fit me in at the end of morning or afternoon clinic to see me and help. Would yours? You need to get better first, and taking these immune system lowering drugs is not going to help. Is there someone at home with you who can do the ringing up and getting you there? I am sorry not to be more helpful, but I am approaching this from the view of what I would do - indeed have done in the past - it's the only view I have! DD

theresa4

HI DD

there is no chance of seeing the rheumy early as he has over filled clinics as he is the european specialist so heads the whole department :roll: :roll: I thought the infection had cleared as I was ok for over a week and restarted my drugs after 6 days clear. I think the rheumy registrar was trhinking my tonsils might need to come out (which is not a thought I want to consider) but I said I had never had throat problems prior to starting the biologics (nrs 1,2,3 and now 4). My glands are coming back up again in my neck and are very painful again. My Gp feels Im in a rotten position of weighing up which is worse. Im damned if I do damned if I dont!!
I have a telphone consult with my GP tomorrow eve so I'll see what he says then (I couldnt get in to see him til fri but hes really nice and will fit me in if I speak to him)

I know its a big decision and I shouldnt take it lightly but how long can I go on like this? does anyone else have this problem, my white cell count is ok but maybe because Im always fighting infections ?

Thankyou again DD for your help and advice xx
Theresa

dreamdaisy

salamander and queenfan are both having a rough time, there are one or two others as well: do you use hand gel when out and about, as well as when in? Everyone thro my front door has a squirt of gel, even the meter reader. I am working with seven children at the minute, all from different schools: each session starts with hand gel ( and any waiting parent gets squirted too.) I have not had a bug for ages now: I feel rubbish thanks to the arthritis but I am bug-free, so far! Start squirting. DD

theresa4

dreamdaisy wrote:

salamander and queenfan are both having a rough time, there are one or two others as well: do you use hand gel when out and about, as well as when in? Everyone thro my front door has a squirt of gel, even the meter reader. I am working with seven children at the minute, all from different schools: each session starts with hand gel ( and any waiting parent gets squirted too.) I have not had a bug for ages now: I feel rubbish thanks to the arthritis but I am bug-free, so far! Start squirting. DD

HI DD
yes I carry it with me but I have such a lot of people in and out of my house all day everyday with my husbands business and my kids and friends and next doors little kids. I have anti bac gel in every bathroom and at every sink and I use disinfectant wipes on all door handles and light switches regularly. Have slept most of today but still feel washed out.

tommorro is another day xx
Theresa

ironic

Hi Theresa,
I am so sorry things have gone so wrong for you. All the side effects are really awful for you. I cannot pretend to know what you are going through but I wanted to send all my best wishes with and hope that your consultant can give you proper advice. He must have all sorts of different feedbacks from the trial. That is what trials are for surely? He may want to try you on another combination of meds. So maybe being honest with him might not be such a bad thing. Sweating is really the pits so my heart goes out to you. That alone can make life miserable.
Hope your daughter and granddaughter are doing ok. Gosh time flies it does not seem to minutes ago that you were decorating for the new arrival.

dreamdaisy

Hello theresa4, I hope things are a little better/brighter today. DD

frogmorton

Hi Theresa

Are you feeling any more like yourself today?

Hoping so

Love

Toni xx

theresa4

hi toni DD and ironic

Thankyou for your replies.

My throat is sore today and my neck glands are very painful but am speaking to my GP tonight so Ill see what he thinks. Im still exhausted just want to sleep but trying not to at minute although even if I stay up all day I still dont sleep at night properly :roll: .

My joints are still stiff and sore and now Im not sure if I should take MTX tomorrow as I could be coming down with another infection???? :?: but if I dont take it again Im not going to have much luck in my joints improving? :?: ? Last night was awful my knees were so painful and felt like they were on fire, and my wrists seem in constant agony it seems right now my ankles are the only joint that I can put pressure on and that is painful too but at least I can walk hey :roll:
Will let you know what my GP says later

Love to all

Theresa

dreamdaisy

I know what you mean by the 'on fire' thing: I swear I have a little man in each knee, 'knitting' with red-hot pokers. They knit throughout the day, but seem to be more enthusiastic at night! Rest as much as you can and if you do have an infection I would advise holding off on the meth, it will only further reduce your immune system and make it harder to shake off any bug. Damned if you do, damned if you don't, such is the life of a poorly person on meth. It's tough. Hang on in there, theresa4, things will ease in due course. Thinking of you. DD

theresa4

Thanks DD

Just had my lunch Jacket potato and cottage cheese I really enjoyed it but am now burping for England. looks like my food intolerances are coming back. My son said no more potato for me as he says its embarrassing as I do loud burps following eating it :oops: . (its only a matter of time before I cant eat it at all though when it makes me sick again I havent been able to eat it for over 10 years). THat could explain why I feel so crappy as the cimzia and MTX together got rid of all my food intolerances and they are returning along with more joint pain and stiffness. Its obviously not working at the minute. Oh the joys. Buurrrp :oops:

Theresa Buuurrrppp :oops:

dreamdaisy

Yup, the humira has knocked my intolerances on the head for the time being and I am having a whale of a time eating cherries and strawberries - the work of the devil in my previous anti-TNF life! - plus eggs and apples and tomatoes and oranges and cheese and cream and lots of other goodies. The stuff I missed out on when younger - grrrrrrrrrrrrr. I don't burp tho - I shall reveal no more! DD

barbara12

Hi theresa4
You moan away, it will do you good to talk to us lot, and get it of your chest.
You poor thing, I do hope your gp can give you something to help the pain.
Please let us know how you get on.
Sending you loads of hugs (((((((())))))
Love
Barbara xx

ironic

Hi,
Just wondering how you got on at the doctors.

No more spuds That is awful. Got to have my chip butties.

You burp away it will make your granddaughter laugh anyway.

Lv, Ix