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Date: 15.03.2012
From: bsk

Subject: Enbrel, new thread, reply to Rhona & Lynn

Hi girls, how are you doing today? I hope you are both feeling a bit better. I am but plagued by building work at home (noisy and dusty). I try and go out as much as possible but it is not very pleasant. Looking forward to the rain to wash everything down!

Trying to pace myself today but not doing that well! Can't resist getting into the garden in this weather and trying to sow seeds.

Let me know how you are getting on.
take care xxx
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Date: 15.03.2012
From: lynnr

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

hi ladies bsk i hope you get peace soon im still housebound waiting on my dr app on monday my wrist is flaring so bad i could scream, rhona i hope your doing ok as well. take care for now x
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Date: 15.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Sorry to hear that Lynn, role on Monday. I've overdone it in the garden and my wrist has come in sympathy with you. I never, ever learn.

Take care Lynn. xx
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Date: 16.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hi Girls, hope you are both feeling better today, i am still struggling on. It is very wet here today so that doesn't help the joints. Hope your ear is better Lynn and your wrist gets better soon. Hope the building work is finished now bsk. take care xx
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Date: 16.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

meant 'roll on Monday'!

I'm feeling much better today. Building will go on for weeks so just got to get used to it!

Sorry to h ear you are still struggling Rhona.
xx
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Date: 16.03.2012
From: lynnr

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

I'm still struggling away as well just feel so down lately Friday night and I'm in my pjs when I shud b going out with friends this flare up has really dragged me down I just hope they say they can't see any infection in my ear and let me go back on my enbrel.
Take care ladies and have a lovely weekend x
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Date: 17.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

well, you couldn't make it up......woke with a sore throat in the middle of the night and realised this morning I have oral thrush (lots of white stuff in my mouth.) Another trip to the doctor and more drugs. Throat is really bad.
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Date: 17.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

What's happening to us? guess that's a side effect of the antibiotic, i try not to get them. Still feeling stiff and wrist has now started to flare up, sometimes gargling with salt and warm water can help a bit for throat but not sure for thrush, take it easy x
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Date: 17.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Thanks Rhona. I've got nystatin and something else for the throat and am taking pain killers too. It's never-ending. Sorry to hear your wrist is bad. Mine isn't so hot either. Maybe it's the rain - bad here today.

Lynn, you are not the only one in your PJs when you should be going out! (though you are much younger than me so probably feel it more acutely)

Hope you both have a better day tomorrow. take care xx
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Date: 19.03.2012
From: Lynne

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hi ladies hope you arent suffering too bad I'm just going out to the dr to see about this ear and my rash is back with a vengeance so I dont think it could have been the antibiotics after all ill keep posted x
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Date: 19.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hi Lynn, hope you get on ok at doctor, let us know how you get on. That is strange that the rash is lasting so long, hope your ear is getting better. Are you any better today bsk? I do hope so. I feel awful today, i am sore everywhere and i could cry, I am so fed up being stuck inside, although it's raining and cold here today so don't suppose i'm missing too much. take care xx
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Date: 19.03.2012
From: Lynnr

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hi rhona I'm back from doctor so they couldn't syringe the ear yet it was bleeding and I've to go down to hospital it is really painful he wants the wax out to look and see what's going on in there then he will deal with the rash.

I'll keep u posted
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Date: 19.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hi Lynn, that sounds really painful. Hope you got it sorted at the hospital. I wonder what the rash is then...... hope you feel better soon hun.

Same to you Rhona and why isn't the enbrel kicking in yet? Soz to hear you are still suffering.

I'm ok except stupidly tried to put a curtain rail up this morning. I know, I know but got no-one else to do it. Couldn't do it properly, wrecked the ceiling and my joints. I find it so frustrating to be unable to do things like that anymore. Knee is playing up too so am on the pain killers tonight.

Lynn, let us know how you get on.
xxx
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Date: 19.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hi Lynn, That does sound painful, probably best that you get seen at hospital. My daughter had terrible bother with her ear last year and after 3 courses of antibiotics she was sent to the hospital and they syringed it and that sorted it out, i hope you will be the same. It is very frustrating when you can't do the things that you have been used to doing bsk but watch what you are doing. I don't know why the enbrel is not working and it's number 11 jag tomorrow and i have being doing them faithfully, i was supposed to cut the steroid down today but was too sore to do that, take care. xx
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Date: 20.03.2012
From: Lynnr

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Ended up nothing could be done last night because net consultants were away home just net nurses so I've got an emergency app today at half 12 x Rhona I can't believe thats jag 11 that's would have ment I would have been on jag 12 this Friday which really annoys me to think I've been off it this long.
I'll write later when I get back
Bsk hope ur doing okx
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Date: 20.03.2012
From: Lynnr

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

His ladies well what a day I've had I went to hospital and he managed to suction the debris from my ear and was great news there was no infection behind it but the he decided to look in my nose and throat so he inserted a tube up my nose it was awful but again he was happy it looked clear , so I had app with my dr surgery and he thinks it's been the enbrel that's caused the rash he says a rosacea type rash and has given me a 2 month course of antibiotic but said I could be on them 6 months he reckons I'll be taken off the enbrel but how will this work for going on to say Humira will I not be able to take the anti tnf until I get the rash treated.
I cannot believe my luck I'm sick fed up I've to phone my rhumy nurse tomorow and take it from there.
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Date: 20.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

What a blow Lynn. I'm really sorry it's turned out to be the Enbrel.

I don't know a huge amount but think I read somewhere that you have to be clear of an anti tnf for 12 weeks before starting another one. Can I ask why he thinks you might be on the antibiotics for as long as six months? I know my chest consultant thinks I might have to go on a low dose whilst on the Enbrel to keep infections at bay. Will see how that pans out.

Sending you a big hug tonight. Let us know what the nurse says tomorrow.

I'm fine.
xx
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Date: 20.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

That's good that they managed to syringe your ear Lynn and there is no infection. Why do you need a 2 month course of antibiotics, that seems an awfully lot. Is it because of the rash? The rhumy should be able to give you more advise on that. It is a shame if you can't have any more of the enbrel but there should be something else that they can give you. Take care. xx
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Date: 21.03.2012
From: Lynnr

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hr says its a Rosacea type rash and because it's probable that enbrel has given me this he says I'll probablyn always have it but to get it under control you need to fix the problem from the inside out which can take months I'm so confused by the whole process I'll let u know what rhumy nurse has to say .x hope ur both feeling better than me
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Date: 21.03.2012
From: Lynnr

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Well I've just come off the phone from the rhumy nurse and she wasn't a great help she was cheeky saying what do you want me to do about it told me I would need to wait until next week and speak to the other nurse and she told me to go back on the enbrel I mean 2 different things dr says no she says yes I came off phone in tears not a happy chappy today x
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Date: 21.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

That is just awful Lynn that she should speak to you like that when you are rightly worried and confused by it all, if you can't phone them for advice then who can you phone. I would call back and ask to speak to a consultant and see what they suggest, it's not good enough getting different opinions like that, I do hope you get it sorted. I feel worse then ever this morning so i really don't think the enbrel is doing me any good, my hands are all swollen and sore and they were not like that before starting it. hope you get it sorted out. take care. xx
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Date: 21.03.2012
From: Lynnr

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Aw poor you rhona your having a time of it too I hope they get you sorted you would think it would be showing some benefits by now if it's going to work, I'm distressed after that phone call today and at the moment I'm adamant I'm not phoning rhumy nurses again I really feel like putting in a complaint about her but not sure it's worth the effort I'm so depressed right now and that has just made me worse do you not think there is anything worse than some one who doesn't have this disease telling you they know how u feel because she kept saying that to me and I wanted to scream no you no not know how bad I feel. My husband was so angry when I told him and most of my family said I should complain but not sure I've got the energy.
I hope you feeling a little more improvemt tommorow rhona. Take care x
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Date: 22.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Lynn, you should not put up with your nurse speaking to you like that. I had one nurse that was rude to me and kept, wrongly, hinting that I was drinking a lot of alcohol because my liver results were up on mtx, and I complained to my GP, who rang her up and told her in no uncertain terms that I was not a drinker! She was better after that and I found out after that I'm not the only one to complain about her. I've now got a different nurse who is fantastic.

I think you said you had another nurse you could contact but I agree with Rhona, you should call your consultant.

Rhona, sorry to hear the Enbrel isn't doing anything for you yet. ¦When do you have your next appointment with the hospital?

I'm ok, feeling a bit down today for some reason though.
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Date: 22.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hi bsk, Glad you are ok. My next appointment is on 10th april. i get my blood results tomorrow from doctor so will be interesting to see if ESR has went down any although i don't feel that it has and i am still taking small dose of steroid. I hope you are feeling better today Lynn and when you feel up to it call and speak to someone with some sense, you don't want to be taking antibiotics unless you need them and you can't go back onto enbrel until you know it's safe. take care. xx
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Date: 22.03.2012
From: Lynnr

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Aw I'm just so fed up with the whole thing I eventually took my enbrel yesterday I'm not sure it was the right thing to do but it's on her head I go down to see the other nurse next Friday so I'm not phoning another person she has put me right off wanting to ask them anything.
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Date: 22.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

It's just not right to be feeling that way Lynn. I hope you get a better response from the other nurse.

Be interested to see too about your blood results Rhona. Hope they have gone down.

I think there must be a bug about as I am feeling a bit of nausea today. Am thinking of starting to cut down the steroids even though I haven't got my new supply of enbrel yet. Am so fed up with all these drugs and side effects.
xx
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Date: 23.03.2012
From: r

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hi Girls, I Hope you are feeling a bit better today Lynn after taking the enbrel.

I do hope you are not if for anything bsk, you have enough to contend with without any more infections or bugs.

I got my blood results today and surprisingly my ESR has went down from 95 to 27 which is good although to be honest i don't feel any different. I know what you mean about being fed up with all the drugs bsk at times i feel like throwing them all away. xx
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Date: 23.03.2012
From: Lynnr

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hi ladies I'm not feeling any Better my fingers are more swollen and my knees are getting really stiff I got my referral letter in from the maxillofacial surgeon I've to go on the 23 rd of April so not too long I wonder what he will say.

Rhona that's great your esr has went down hopefully your pain will ease off soon and bsk I think there is a lot of sickness bugs going about just now my wee boy had a tummy upset the other night I hope you both feel a little better soon I'm going on a wee night out on sat and it's so overdue I'm looking forward to getting dressed up hopefully feeling half human again lol hope you both have a lovely weekend xx tc
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Date: 23.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

That's great news Rhona, at least your joints are being protected even if they feel swollen. It's a positive step at least.

Hope you both have a lovely weekend though I will prob look in here before Monday.
xx
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Date: 23.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Thanks bsk, that's good to know, i didn't realise the joints would be protected when the esr is lower

Hope you enjoy your night out Lynn, think we have to have plenty sunshine this weekend so hope the both of you enjoy it. xx
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Date: 23.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

I think so Rhona. At least that's what the nurse told me. It seems to me that is the main reason they put you on this stuff as the side effects are tough.

xx
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Date: 24.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

It does make sense bsk as that is the way of checking how active the disease is. I hope you are feeling well today. It is taking me hours to loosen off in the mornings as my fingers are so stiff, anyway have a nice day. Hope you are ok Lynn and have fun tonight xx
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Date: 24.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

I'm ok today thanks. Though can feel that the steroid jab is wearing off, I am still able to get around reasonably well.

How are you doing Rhona? I hate the morning stiffness, it takes me ages to get going, don't even bother trying to rush it these days.

Hope you enjoyed your night out Lynn!
xx
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Date: 25.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hi bsk, It is a lovely day here but i am sitting here feeling sorry for myself, i am so stiff and my hands are so sore. I hope you are doing better today, like yourself i think that the jags i got in hospital are wearing off now. Take care.

Hope you are well today Lynn and hope you had a good night last night.xx
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Date: 25.03.2012
From: Lynnr

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hi ladies I had a lovely night makes you feel half human for a change the weather here is lovely too but my antibiotic says I'm not allowed in the sun and rhumy nurse sed to stay out of it while on enbrel great just my luck.
Rhona sorry your sore I would phone ur nurse and see if she can advise you, bsk I hope your having a lovely day enjoying the weather .
Take cared
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Date: 25.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

I can understand why you are feeling sorry for yourself Rhona. Are you reducing your steroids as that could be part of the problem, sorry can't remember what you said.

I suppose I should stay out of the sun too but I put suncream on. Managed to do some gardening today without too much pain, mostly sitting on a chair!Must say, it has improve my mood today.

Glad you had a good night out Lynn!
xx
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Date: 25.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hi bsk, yes i reduced them last week and i do notice a difference, if there is no improvement i may have to increase them again. I also have fluid in my knee, if becomes any more troublesome i will call the hospital and see if they will remove it. Good that you are feeling better and enjoying the sun and we also have an extra hour of daylight. xx
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Date: 25.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

I have that problem all the time. It's a difficult one. Have never managed to get off the steroids in 2 1/2 years. Every attempt thwarted.
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Date: 26.03.2012
From: Lynnr

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Well it's another lovely day here just wish I could sit in it but with this skin rash it's a no go was out back for a few mins yesterday and my face felt on fire last night I'm doing ok just really fed up but at least I've got hospital appointment on Friday x

Enjoy the weather while it lasts xtc
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Date: 26.03.2012
From: Lynnr

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

I have received a letter in to go for a consultation for a pain clinic? Have either of you been to anything like this? The lady says I have to meet the consultant to assess me for starting the clinic, and my appointment for the maxillofacial clinic is 23 rd april so now I'm just waiting on my referral for dermatology coming through, do either of you get DLAl I have asked for a reconsideration for my care rate I need help with mostly everything I do and I was only getting low rate care, do you think I should phone them and let them know the change in my meds and the new appointments I have?
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Date: 26.03.2012
From: r

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hi Lynn, No i have never been to a pain clinic. Did the hospital arrange it for you? you can let us know if it is any help to you. It does sound a good idea and hopefully you will find it helpful. I have just recently been awarded DLA, i applied 2 years ago and was turned down. I had a doctor come to my house a couple of months ago to assess me and i was awarded middle rate care. You are supposed to inform them of any changes in your condition so it wouldn't do any harm to phone them. x
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Date: 26.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hi Lynn, I did go to a pain clinic some year ago when I had a bad neck. Am sorry to report I had a bad experience. They gave me a form to fill in then told me I was depressed and needed to be on anti depressants. Needless to say, I was already on them! So what did that mean!

Also,the consultant wanted to give me a steroid injection in my neck - he said I had osteoarthritis of the neck (I don't), I made him look at the xray, which he hadn't bothered to see, and he could see I didn't have osteo. Damned if I'm going to let someone put a needle into my neck unless I entirely trust their judgement and it is entirely necessary!

Don't suppose they are all as bad as that, hope not.

Knees bad today and finding it painful to type as well, for some reason my forearm really hurts, so will sign off now. Speak soon. Hope you all ok.

xx
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Date: 26.03.2012
From: Lunnr

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

I had a surprise phone call today from my rhumy nurse who said she has been talking to my consultant rhumy and he is wanting to see me on wed which I'm pleased as he can maybe shed some light on all these problems I'm having.

Yeah I will give the dla a call I suppose it can't do any harm just letting them know.

Bsk I'm sorry your experience with the pain clinic didnt go well I hope they are not all like that or like you I will not be going back.
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Date: 26.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

That's good Lynn, things seem to be moving for you. It will be interesting to see what he has to say.

Sorry you haven't been so good today bsk, i am sore all over today. take care xx
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Date: 26.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

About time too Lynn!

Thanks for your support Rhona. Think the steroid jab is wearing off unfortunately. Rang the nurse to find out what's happened to my new supply of Enbrel - which I am NOT looking forward to taking!

xx
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Date: 27.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hi bsk, i think my steroid jabs have worn off as well. I am due to take my 12th enbrel injection today and i am in two minds whether to take it or not as i feel worse than ever, i feel sore everywhere and i am not getting the benefit of this lovely weather. You may find that it helps you, i really hope it does. Hope all is well with you today Lynn and good luck at hospital tomorrow. xx
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Date: 27.03.2012
From: Lynnr

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hi ladies rhona I'm sorry your not feeling any better I had another phone call from my rhumy nurse today saying the rhumy couldn't see me tomorow after all and has pitt me back in for Friday I'm so sick fed up of changing plans all the time having to organise child care for my children etc, bsk are you getting a new supply of enbrel? I sometimes wish I had never heard of this bloody enbrel lol

Take care
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Date: 27.03.2012
From: MARLENE

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

sorry to jump in on your posts, I have been reading them and just want to say chin up girls and a great big hug to you all XXX TAKE CARE
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Date: 27.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

I'm getting a new supply next week, half dose. We'll see. Sorry your rheummy has let you down Lynn, as Marlene says, chin up (thanks Marlene!)
Friday will be here soon.

Rhona, doesn't sound as if the enbrel is doing much for you. Have you phoned your nurse and are you still cutting back steroids? I wonder if you are dropping down too quickly as that will cause you to flare and the enbrel may not be enough to cope with the drop. How much are you going down by? I do lmg every week or even every two weeks or longer if I flare. Apologies if I'm preaching to the converted it's just sometimes I forget myself :)

Take care xx
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Date: 27.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Thanks Bsk, i appreciate your concern and i don't think for a minute that you are preaching, although i tend to do that often lol. I started on 7.5mg of prednisolone for 2 weeks then 5mg for 2 weeks and i am now down to 2.5 but was told i could go back to 5 if i was struggling so i think i will have to increase them although i didn't find that was enough to make much of a difference even at 7.5, i decided to take the enbrel today and you are right i don't think it is doing much for me and i am still on all the other drugs that i was taking before. Glad that you are getting your next week and i will keep my fingers crossed that it helps you.

As bsk says Lynn, Friday will be here soon, it is a nuisance when you have to rearrange things but hopefully it will be worth it.

Thanks Marlene for your good wishes, i hope you are feeling well. Take care xx
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Date: 28.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Only a hunch, but I think you are dropping steroids down too rapidly Rhona. I can't do 2.5 drop without flare up and nurse advise smaller 1mg. Even when I was on Cimzia, which worked quite well for me, I couldn't drop down that quickly. Have a chat with your rheumy - don't wait for appointment.
xx
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Date: 28.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Thanks bsk, i thought 2.5mg was the smallest dose you could get but i don't really know much about steroids so that is interesting and you may well be right. What a night i have had, my daughter was taken into hospital during the night, she was really sick and with her being a diabetic i had to call the NHS 24 and they sent an ambulance right away, i hope she may get home later. Hope you are feeing better today and i appreciate your reply. tc xx
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Date: 28.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

I'm sorry about your daughter, the last thing need, but I hope she comes home today. Let us know how you get on. I'm good today but feeling the heat!

You can get lmg tablets or 5mg soluble pred. The smaller dose doesn't come enteric coated. The soluble has to be drawn up in a syringe but it is kinder on my stomach.
xx
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Date: 28.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Thanks bsk, i will ask about that, she said if i was struggling to go back up to 5mg. do you think i could take 5mg and 2.5 on alternative days? that way i can have the ones that are EC? and would have enough to last until i see them again as i hate going to my doctor. My daughter is getting home this afternoon so that is something. xx
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Date: 28.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

I don't know about that Rhona. Best to ring your nurse or rheumy and have a chat. Also, they might be able to advise further. Sometimes I have to go up for a bit longer. Won't your gp give you a repeat prescription without a visit?

Glad your daughter is coming home. I hope she is well.
xx
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Date: 28.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Good idea bsk i will maybe just do that. I usually do get repeat prescriptions but not sure about steroids as i got them from hospital and he is very awkward at times. appreciate your advice. Glad that you are good today, watch you don't get sun burn. daughter is home now but she is very tired, think she should have been kept in another day. xx
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Date: 30.03.2012
From: Lynnr

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Well ladies today's the day I can't wait to get to hospital and see what this temporary rhumy has to say my flare has definatley calmed down but after being back on my enbrel for 2 weeks I've woke up this morning with a sore ear and a throat I hope I don't need more antibiotics again.

I hope you both are doing well and are relatively pain free I will report back later.
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Date: 30.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

That's good that flare calming down lynn, sounds like the enbrel in helping you, hope you got on well at hospital. Hope you still good bsk. have a nice weekend. tc xx
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Date: 30.03.2012
From: Lynnr

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hi ladies I was at hospital most of the afternoon and I saw my new rhumy he is really nice he is taking me off enbrel because of the infections and he is changing mento humira and wants to put me back on mxt at 10 mg as my disese is still very much active I'm not too happy about the mxt as my platelets were off when I took it before and I was getting nose bleeds and sore throats but I'll trust his judgement for now and give it a try,I need to wait on my humira getting ordered then delivered which can take some time. Here is hoping I don't get the infections on humira as well hope u both have a lovely weekend take care x
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Date: 30.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

hi lynn, We don't really have much option but to trust their judgment and this may be a good move for you, you did seem to get some benefit from the enbrel although you couldn't put up with all the infections. I hope the humira is better for you, if you have any problems with the MTX you can always stop it although they do say that the biologics do work better with it. xx
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Date: 30.03.2012
From: Lynnr

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Yeah I just hope I can tolerate the humira better than the enbrel as you say we just have to trust their judgements I hope you get some joy with your treatment as the enbrel doesn't seem to be helping you too much x
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Date: 30.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hi lynn, well, that is some sort of progress I guess. Hope I'm not going down your route of infections and that humira works for you. Glad they took you seriously and are doing something.

Rhona, how are you getting on?

I'm ok,seemed to have sore throat again so back on nystatin though not entirely sure it is thrush again. Ah well!

Hope you both have a restful weekend. Shame the sun has left us for the time being :(
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Date: 30.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hi Girls, Hope you are not going down with anything bsk. I was going to call the hospital today but thought if i increased the steroids it might change my blood results and make them think the enbrel is helping so i am going to try and persevere til appointment in just over a week and hopefully they will change it to something else. I was waiting on the OT erecting a rail at my door to help getting in and out and couldn't believe it when a neighbour called to say they had put it at her door she couldn't believe her eyes when she went out today and noticed it bolted onto her wall I don't suppose it's funny but i couldn't help but laugh. xx
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Date: 30.03.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

That is very funny Rhona! What idiots!

I get your point about the steroids and blood results but have to tell you that mine are always low because of the steroids and my rheumy factors that into the equation. He goes completely on symptoms with me. Hang on in there, I hope you get some answers next week.
xx
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Date: 30.03.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Thanks bsk, have a lovely pain free weekend xx
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Date: 03.04.2012
From: Lynnr

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hi ladies how have you both been? Not too much pain I hope im pretty much the same I've collected my methotrexate prescription tonight some will be starting tomorow not too keen especially when it's the holiday weekend and my hubby will be off Friday and Monday but I suppose needs must I think it's worse this time round as I know I rubbish I felt on it, after having the sun last week and snow back this week I'm surprised everyone isn't down with flu lol

Take care ladies x
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Date: 03.04.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hi Lynn, Perhaps you will be ok this time on the MTX i guess you know to take it after food, i've also read that it sometimes helps to take it at bedtime if it makes you feel sick. I'm still suffering and i decided to miss my jag today just to see if i feel any worse without it, if i do i can always take it tomorrow. I go to the hospital next tues. anyway.
Hope you are well bsk. This weather is crazy, i had to put my heating on at full today, last week i was getting ready to look the shorts out lol xx
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Date: 04.04.2012
From: Lynnr

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

I've just taken it there the now my hubby is home from work so I am going for a lie down it was nearly 2 weeks in before I started feeling sick last time but as you say things could be different this time round.

I hope you feel a little better its a shame you are suffering as much won't b long till Tuesday and maybe they will change you as well, its mad to think we were told these anti tnf drugs were miracle drugs and us 3 just seem to be feeling rubbish :( I hope your feeling ok bsk i too have had to blast my heating on.

Take care
Lynnrx
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Date: 04.04.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

hi Girls, Well I've just postponed starting my half dose Enbrel this week as am going away in a couple of weeks and don't want to be ill. Shows how much confidence I have in it lol!

Lethargic as anything these past couple of days. Hope it's not the steroids wearing off. Keep falling asleep but am relatively pain free.

Hope the mtx works for you and isn't too gruesome Lynn. Will be hoping you get through the Easter weekend ok. Roll on Tuesday Rhona, let's hope they can do something for you.

take care.xx
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Date: 04.04.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hi Girls, I actually feel a wee bit better today and that is after missing the enbrel yesterday. That's so true what you said Lynn, i really thought this expensive drug was going to be the answer, just goes to show. It would be funny if they gave me Humira as well. I took 22.5mg of MTX today and my small dose of steroid so hopefully that will keep me going. I think you are doing the right thing postponing it bsk. Are you going somewhere nice? take care xx
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Date: 04.04.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Well that is interesting Rhona. Are you going to leave it until you see the rheumy on Tues?

Thanks for vote confidence in my decision. Only going over the channel but don't want to have to postpone things yet again.I desperately need a break from things.

xx
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Date: 05.04.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

I hope to stay off it bsk, unless i get worse than i have been then i might consider taking it again.

A break will do you good, it's always nice to get away, especially if you get nice sunshine. xx
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Date: 05.04.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Sounds sensible to me. We have to make our own decisions in the end and we probably know what's best for us.

Shame about the weather here, not a very nice Easter to look forward to :(
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Date: 06.04.2012
From: Lynnr

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hi ladies just came on ton wish you both a great holiday weekend and hoping you both get through it with as little pain as possible, I am going up north today to see my sister and my dad and loads of family it will be nice to get away I've to take my injection tomorow so this is t he 1 st time I've traveled with them I've got it all packed up in a cool box lol and a separate bag for all my med it really is like a flitting when I go anywhere well I just have to laugh because you know the saying if you don't laugh you will cry.

Take care and have a lovely weekend what ever your plans xx
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Date: 06.04.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hi bsk & lynn, I hope you both have a lovely Easter. Enjoy your time up North with your family Lynn. Is that you starting the Humira injections tomorrow? Good luck if it is. Take care and speak soon. xx
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Date: 06.04.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Have a great break Lynn. Let us know how you get on with the injection.
Happy Easter to you all!
xx
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Date: 06.04.2012
From: Lynnr

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

I'm not starting the humira yet there will be a few weeks I between so I had two enbrel injections in the fridge they told me to take them and wait for word.
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Date: 08.04.2012
From: Lynnr

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

How are things I hope things have settled a little for u rhona I'm sore but not any more than usual and the mxt has not had time to get into my system so no sickness yet lol, bsk how r things with u? X
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Date: 08.04.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Thanks Lynn, I feel a little better today and managed to get out this afternoon. I ended up taking the enbrel again on Thursday as my hands were so sore, they are still swollen, i really don't know if it helps or not but will wait and see what the hospital say. Hope you enjoyed your weekend away and hope you are ok bsk. take care xx
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Date: 09.04.2012
From: Lynnr

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Aw rhona I'm sorry to hear that I hope you get some joy at the hospital but I'm sure they will change ur meds as the enbrel is defiantly not working for you and if you have tried it for more than 12 weeks with no joy I'm sure they will change it for you when do you go back?

Take care x
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Date: 09.04.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hi Lynn, I have my appointment at the hospital tomorrow and i hope they do change it to something else, it's just the worry of starting again on something new but i guess we have to keep trying. I will let you know tomorrow what they suggest. xx
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Date: 09.04.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Good luck tomorrow Rhona, hope you have a good appointment.

Hi Lynn, My knee has flared up again so am at home resting. Did too much yesterday. Might have to put my steroids up a bit tomorrow. God I am so sick of this fluctuating thing, I can never plan anything. Got family around this weekend and am having to pass on doing stuff, sitting at home bored. Sorry to moan but am fed up today.
xx
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Date: 09.04.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Thanks bsk, I'm sorry to hear that you knee has flared up, just take it easy, my knee has been swollen for a couple of weeks now so hope they take the fluid out tomorrow although it doesn't feel so stiff today but that's probably because i have appointment tomorrow, a bit like going to the dentist lol. xx
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Date: 09.04.2012
From: marlene

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hi girls, just a quick hello.I hope you all get sorted soon, wish you luck and hope you all get a bit of pain free time soon. Big hugs for all of you x
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Date: 09.04.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Thanks Marlene, same to you :)
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Date: 10.04.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hi Girls, went today to hosp and told to stop the enbrel as they agree it is not helping. The nurse will have to speak to doct to see what he thinks i should try next. Have to wait now for an appoint to see consultant, not sure when that will be. Hope you are both well. xx
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Date: 10.04.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Oh dear Rhona! I'm sorry you've got to go through all that again but glad they are taking it seriously.

Why can't your rheumy nurse just speak to the consultant instead of having to wait for appointment? Mine made the decision to take me off Cimzia and start me on Enbrel.

Fingers crossed it doesn't take too long.
xx
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Date: 11.04.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

I agree bsk, i was a bit disappointed and my appoint. is not until June although she is going to try and get me an earlier one, i have also to make an appointment to get fluid out my knee and can't get one until end May unless I can get a cancellation, i had hoped they would have done that yesterday. Just hope I don't get any worse before then. How are you today? xx
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Date: 11.04.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hi Rhona, I'm not too bad thanks. Not walking much as painful so just pottering about at home.

I am shocked at your delay as I can just phone the on-call rheumy and they will see me the same day in A&E. They even give me a time to meet me there. Also, when I first got ill they just took the fluid off during my appointment and then admitted me into hospital. I can't believe they are making you wait for 6 weeks, you must be in agony.

If it gets worse, take yourself off to A&E and get them to sort you out. Don't wait!!!

Sending you a very big hug.
xx
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Date: 11.04.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

Hi bsk, Thanks for your message. I am hoping i don't have too long to wait, i may have to increase the steroids if i get any worse. That is fantastic that you can phone and they will see you the same day, i wish it was like that here. I used to be able to phone and get in quickly if i needed a steroid injection but was told yesterday they are all fully booked so looks like you have to suffer now. I hope after you have rested a bit you will feel better. When are you starting the half dose of enbrel? take care and big hug to you to. xx
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Date: 11.04.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

I just don't how they can be booked for something like that, it's not as if you know when you are going to need to have a joint aspirated! It makes me angry just to hear it. I may have to go up on the steroids too, waiting to see my nurse next week, see what she says. I'm not too bad really.

Start the Enbrel end of the month. Can't say I feel very enthusiastic about it lol!
xx
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Date: 11.04.2012
From: rhona

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

That's exactly what i thought and i did say that was too long to wait and was told they will try and get me an earlier one. Just as well I have the steroids to keep me going.

Surely out of the 3 of us 1 will be helped with it, so you may be lucky, i do hope so. xx
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Date: 12.04.2012
From: bsk

Subject: Re: Enbrel, new thread, reply to Rhona & Lynn

I think it might help my joints but not sure if I can avoid the infections. See my chest consultant next week, might opt for long term antibiotic if I can.
xx
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