NO CIMZIA FOR ME AGAIN........................

[sylvi]

Well my rheumy nurse has told me i can't have my Cimzia this week as i am going on holiday and she doesn't want being taken ill after having while i am away. I know it is better to be safe than sorry,but i am so fed up as i am in a flare as well. I ache so damn much today..................................

[sylvi]

Its a dangerous drug and they don't want me to fall ill while i am away especially after that fall three weeks ago which i am still recovering from.xxxx

[Hidden]

Oh Sylvi, sorry you've had such disappointing news

I know it's hard but I would rather the rheumys were cautious about such strong drugs - better safe than sorry.

Can you at least get some more effective pain relief?

Gentle hugs,

Cece x

[sylvi in reply to Hidden]

Cece i might go to the drs tomorrow if i don't feel any better,thank you for your kind words.xxx

[nellysgran]

Sylvia, sorry you are feeling rotten, can you not have steroids before you go on holiday ? I hope you can find something to ease your pain.

Wendy xx

[sylvi in reply to nellysgran]

Wendy i am in the process of weaning of the steroids as i have been on them a long time and to be honest i really don't want to increase them if i can help it. I will see how i am tomorrow and then decide about going to the drs.xxx

[Neverwell]

I am sorry you can't have it before your holiday better safe than sorry hope you can get more pain relief x

[sylvi in reply to Neverwell]

Thank you,i might try and see a dr tomorrow and see what they say.xxx

[Hobbles]

Sorry to hear this Sylvi but I understand where your rheumy nurse is coming from.

I was on cimzia and although it worked ok ish at first I became very ill on it and got a nasty Infection. I was on holiday in Germany at the time and was too ill to fly home. I ended up having to travel back in the night lying on the back seat of the car. Awful for everyone concerned.

I ended up being in hospital and being taken off cimzia. Although you feel miserable right now and are desperate and frustrated wanting to be well, it's toxic medicines that we are on and they need careful monitoring.

Cimzia works very well for some...hang in their Sylvi..try and enjoy your holiday xx

[sylvi in reply to Hobbles]

I thank you very much for your comments,it does make sense what she said even though i am only going to cornwall, it is still a long way away from the midlands if i do fall ill. We have no idea what these drugs contain do we as long as they make our ra better thats all we care about. xxxx

[Hobbles in reply to sylvi]

Your right there Sylvi...there are days I am so desperate I am sure I would sell my soul to the devil himself if he offered me some relief lol

Hope you manage a lovely holiday and check out some temporary booster...the dreaded steroids !! We all hate the effect they have long term but they have got me throu many a desperate situations. X

[sylvi in reply to Hobbles]

I have got them down to 1mg every other day and i don't want to have to increase them as i have been on them for years.xxxx

[Hobbles in reply to sylvi]

Well done for reducing them down...I hope you get some peace soon and manage a lovely holiday x

[sylvi in reply to Hobbles]

Well i will up the dose as i want to enjoy my holiday,but i don't like it,thats for sure.xxx

[sylvi]

I have had two injections and yes they have helped me,but i had a chest infection and then i had a fall and a nasty graze on my knee which is very slow to heal up.Apparently you can have some side effects of the drug,hence she doesn't want me to have before i go.xxxx

[sylvi]

Thank you.xxx

[sciqueen]

Hi Sylvia

Sorry to hear you have to interrupt your cimzia treatment. I found that it masked the infection initially, when I had a viral infection, then wallop, I was really ill for the next 2-3 wks.

You can restart when you get back. What about a steroid injection, that won't interfere with you reducing the oral steroids?

Wishing you well

Joanne x

[Luthien66]

Hi Sylvie, that's such bad news you have to stop especially now. But the Rheumys know what they're doing & as everyone has said best to err on the side of caution.

I really hope you manage to enjoy your hols despite the flare up and I know how you feel about the steroids. I have my own love/hate relationship with them! Take care & big hugs xx

[Hidden]

Are you planning on visiting some of the wonderful gardens while in Cornwall? Hope your pain levels will allow you some activities while on your hols. Nothing worse than a flare at holiday time and you have had bit of a nightmare recently with fall etc. hope you have a lovely time, lynda x

[sylvi in reply to Hidden]

Lynda i have just been to the drs and he wants me to increase my steroids to 30mg for 14days so i can enjoy my holiday and hopefully it will ease the flare.We are going to eden project as i want to see the change since we last went. We might go to heligan gardens as well,so if you know of any lovely gardens let me know please..xxx

[Hidden in reply to sylvi]

Hi Sylvi, I have been told that Trebah garden nr Falmouth is amazing, wish I was going, would see as many of the gardens as I could, I used to love gardening but very limited now as to what I can do. We have a greenhouse and I have a perching stool in there and I grow thousands of seeds, all kinds, flowers, vegs etc. 'cos I can do that mostly sitting down, then I end up giving most of them away!! My personal garden labourer, aka husband has to do all the borders and beds now, i will try and add picture of garden, but not sure how to do it!! Hope you have a wonderful holiday in Cornwall and your pain eases a bit for you, you have had a rough patch!! Lynda x

[sylvi in reply to Hidden]

Lynda thank you i will see how far away we are from falmouth and if it is close we will certainly go and have a look..I grow all the seed up at the house for the allotment we have and it makes me feel useful as the intention of the allotment was that we would do it together. Sadly all i can do i pull the beans and fruit if in is within pulling distance.xxxxx

[sylvi in reply to Hidden]

Lynda i have a scooter so i should be able to get about a bit,if there are places that i can't get to then they can park me at the nearest coffee shop with a view while they go off then i will be happy.xxx

[Hidden]

Hope you feel better soon Sylvi and can enjoy your holiday

JoJo xx

[sylvi in reply to Hidden]

Thanks JoJo.xxx

[samjam]

Cimzia has made a real difference to me. However, I am on a tripple therapy including Methotrexate and Sulphasalazine and was advised that Cimzia works better with Methotrexate, which I hate taking! We came to a comprimise and I now take 3 methotrexate instead of 6. I think this highlights that there is no one solution that fits all.

[sylvi in reply to samjam]

It does me when i can get it.I am on 8mtx and sulpha as well.xxx