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Date: 02.05.2012
From: Lynnr

Subject: New thread for rhona and bsk

Hi ladies how have things been? I've not been on so much my pain is getting worse and since starting back on the mxt and anti tnf things r just going from bad to worse as like the last time I got two week 3 on the mxt and had to stop initially for throat infection then urine, I'm thinking of having a period off all these drugs as I cannot go on taking them for a few weeks and then catching all these infections I've still not had my humira delivered but had a couple of enbrel injections left but I won't be taking them the meds are just making things much worse for me.

I hope you both are getting on much better

Lynn x
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Date: 02.05.2012
From: bsk

Subject: Re: New thread for rhona and bsk

Hi Lynn, sorry to hear you are still having a rough time. I don't blame you for wanting a break. I had one for a few months and had a steroid jab and felt better than ever but, unfortunately, it's not a long term strategy. Starting back on enbrel on Friday, IF, I'm well enough.

xx
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Date: 02.05.2012
From: rhona

Subject: Re: New thread for rhona and bsk

That's a shame that you are not any better Lynn, i don't think those drugs are agreeing with you at all. Lets hope the Humira is better for you. You may have to speak to them again and try and sort something out. It is sickening when you try the tnf's and they cause more bother than they are worth. I hope you feel better soon.
Hope you get on well on Friday with the enbrel bsk, surely one of us will be helped with it.
I'm ok but still stiff and sore and probably still have some steroid in my system. I still don't know what to do about the infusions, i don't even want to think about it just now but i guess soon i will have to. Take care xx
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Date: 03.05.2012
From: bsk

Subject: Re: New thread for rhona and bsk

Lynn, I am taking a half dose of enbrel because of the number of infections I've had. Can you ask your nurse if that is an option for you?
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Date: 03.05.2012
From: chrissy

Subject: Re: New thread for rhona and bsk

Hi bsk just read your post, its sounds like the same thing is happening to you as it is to me, these bio drugs just cause you to have infections,
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Date: 03.05.2012
From: Lynnr

Subject: Re: New thread for rhona and bsk

Thanks for ur replys ladies yes its making me so angry because I know how well the anti tnf work if I could only take them long term it's roughlyn3 weeks the longest period I have on either them or now the methotrexate I can't believe he has put me back on to that and exactly the same thing has happened as before I'm getting bloods tomorow to see if my WBC has risen at all then my own dr will phone me on tues and I'll get in touch with the hospital tomorow.
Bsk I will suggest that to my rhumy nurse and rhona I understand how you feel as bsk says we r between and rock and hard plate don't know what to do for the best, and Chrissy I'm really sorry to hear you are having the same problems it's awful .
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Date: 03.05.2012
From: bsk

Subject: Re: New thread for rhona and bsk

Chins up girls - we've got to get through this difficult time.

It is really hard to make decisions about the drugs Rhona, I can't say I would be thrilled about the infusion either, just because it is in your system so long. However, if it is what it takes to get on top of the RA, well......

Sorry to hear you are suffering too Chrissy as well as Lynn. I've been told if I get one more infection I am off the enbrel - and I've only had two injections so far! I'm really going to look after myself and see if it makes any difference at all.
take care everyone. xx
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Date: 03.05.2012
From: rhona

Subject: Re: New thread for rhona and bsk

Thanks bsk, it is hard trying to decide, especially when there is no guarantee it will work and the nasty side effects it can cause, especially the rare fatal brain disease. If they hadn't mentioned that at the hospital i would have been more keen but seemingly they have to tell you about that one. I know all drugs have side effects but that is a bit scary. If things don't get any better than i may have to go for it. Are you excited at going back on the enbrel? i will cross my fingers for you that all goes well.

Hope you feel a bit better today Lynn and you too Chrissy. x
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Date: 03.05.2012
From: bsk

Subject: Re: New thread for rhona and bsk

Fatal brain disease - eek! No wonder you are nervous. However, the word 'rare' should reassure you. Are there any other options?

I don't want to go back on Enbrel to be honest, I think I will just get an infection again. Fingers crossed.
xx
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Date: 03.05.2012
From: rhona

Subject: Re: New thread for rhona and bsk

Not sure if any other options, they didn't offer any others and it was such a rushed appointment i had, they had obviously fitted me in at the end of the clinic and didn't take the time to discuss anything, just gave me a leaflet on it, such a waste of time. Try not to worry too much about the enbrel, at least it's just half a dose and try stay away from people that have colds etc, perhaps now that the summer is coming that will help xx
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Date: 04.05.2012
From: chrissy

Subject: Re: New thread for rhona and bsk

Thanks bsk rhona, lynnr,im not to bad to day, my hand looks like a blow up glove,ha it slowly going down, i dont know you just have to soldier on,its good to speak to people who can relate to you,and know how bad the pain is,hope your all feeling better soon.x
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Date: 04.05.2012
From: Lynnr

Subject: Re: New thread for rhona and bsk

Hi ladies we are all having a rough time of it surely it can only get better I've been for my bloods this morning and phoned my rhumy nurse looks like the mxt is harming my bone marrow and if so I'll be off it again I've not to take any more deliveries for enbrel or humira and she is going to try and get me an appointment to go down, I've told her I would be better off on nothing I can handle the pain as I am so used to it but when the flares start then they can be unbearable catch 22 again....... I'm with you on that rhona I always said if I was offered the infusion the answer would be no I don't think I could cope worrying about the possibilities I'm know to worry lol but that's just my opinion it might work wonders or you could ask for an alternative, hope u all have a good pain free Friday :))
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Date: 04.05.2012
From: bsk

Subject: Re: New thread for rhona and bsk

Oh Lynn, that is not good news. Will keep my fingers crossed for you. I completely get where you are coming from about the drugs but you need something to stop your joints from getting damaged. I've already decided if the lower dose enbrel works, I will stay on that plus low dose steroids. It's the best option for me.

Nurse came this morning so had new injection - leg is burning now, didn't happen before. Let's hope it works without making me ill.

Rhona, thanks for your reassurance. Am stocking up on anti viral hand gel and First Defence. Not that it helped last time lol!

Got to keep positive.
Have a good day everyone. xx
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Date: 04.05.2012
From: rhona

Subject: Re: New thread for rhona and bsk

Hi Girls, what a time you are having of it Lynn with the drugs, surely there must be something that would help you without causing all those side effects. I think you might be right bsk about the small dose of steroid, perhaps thats the answer. I am getting really sore again, my back is really hurting and i never suffered from a sore back, perhaps it's the way i am walking or sitting, i think i will maybe start the steroids again as i have some left from before and i am on 25mg mtx but i dont think it helps. I hope you get on ok this time bsk with the injections. My hands are swollen as well Chrissy, just as well i have the laptop i couldn't write just now, I can't even cut my toenails lol, oh well as you say we will just have to soldier on.
Hope you all are a bit better over the weekend. take care. xx
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Date: 04.05.2012
From: bsk

Subject: Re: New thread for rhona and bsk

Hi Rhona, I didn't realise you were completely off steroids already. It seems a very quick withdrawal plan so not surprised to hear you are still suffering. I normally drop down 1mg a week, sometimes even slower. How many mgs will you take this time? Maybe you should contact your rheumy nurse and work another plan (I spend my life doing this lol! Mine nurse must be sick to death of me by now!)
xx
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Date: 04.05.2012
From: r

Subject: Re: New thread for rhona and bsk

Hi Bsk, when i was in hospital they started me on 7.5mg for 2 weeks then 5 for 2 weeks then down to 2.5. when i got the 2 steroid injections 2 weeks ago i thought i would stop them so that when the jags wore off i would have something to fall back on. When i left the hospital they said if 2.5mg wasn't enough then go back up to 5mg. To be honest i don't think that was enough for me. I was going to just start on 5mg again although i will only have enough to last 2 weeks. My poor dog has just came back from the vet, she has been limping badly, the vet thinks she has arthritis as well,so she was given a steroid injection, what's happening to us all. xx
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Date: 04.05.2012
From: b

Subject: Re: New thread for rhona and bsk

I find I have to go up to 7.5mg to get some relief from the pain. Is your gp ok about repeat prescriptions for steroids? Mine just gives me what I need these days. She's very good so always have a quite a few in reserve.

Your poor dog, she can't even complain on here!
xx
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Date: 04.05.2012
From: rhona

Subject: Re: New thread for rhona and bsk

when i phoned for prescription i got a months supply at 2.5mg, i would have to speak to him to see if he would increase them, feel wee bit better tonight so will wait and see how i am in morning, it takes me hours to loosen out though when i get up. do you feel any better from taking the jag today, perhaps too soon to say. xx
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Date: 04.05.2012
From: b

Subject: Re: New thread for rhona and bsk

Let me know how you are tomorrow. No benefit as yet but it is early days!
x
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Date: 05.05.2012
From: rhona

Subject: Re new thread for rhona and bsk

Hi bks, i'm not too bad this morning, not great but not bad. Hope you are ok and starting to feel a bit improvement with the enbrel. Are you any better Lynn? xx
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Date: 06.05.2012
From: Lynnr

Subject: Re: New thread for rhona and bsk

Hi ladies we sure are having a time of it I'm just the same I have my app tomorow for the maxillofacial clinic I'm quite nervous not sure if I'm really wanting to hear what he has to say, hope things improve soon
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Date: 06.05.2012
From: rhona

Subject: Re: New thread for rhona and bsk

Good luck tomorrow Lynn x
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Date: 07.05.2012
From: Lynnr

Subject: Re: New thread for rhona and bsk

Thanks rhona I got on quite good he says my jaw joints are still quite smooth so no bone destruction so far I've to go back in a couple of weeks for impressions to wear mouth guards in bed so I'm quite pleased oh he said I might need one of my wisdom teeth removed but I can cope with that just so glad the jaw is not too bad x how's things with you rhona ? U made any decisions yet? X
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Date: 07.05.2012
From: rhona

Subject: Re: New thread for rhona and bsk

oh that's good Lynn, you would be relieved to hear that. I started the steroids again this morning, just 5mg so don't know if they will make much a difference. I still don't know what to do, i keep hoping that i will waken up one morning and will feel better and not need them lol. xx
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Date: 07.05.2012
From: bsk

Subject: Re: New thread for rhona and bsk

Hi everyone, Glad things are ok with your jaw Lynn. I have to wear mouth guards sometimes. Not the most attractive of looks but you do get used to it!

Hope the steroids help Rhona. I am cautiously going to say that I can feel an improvement with my joints but it could just be I'm having a good day!
xx
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Date: 08.05.2012
From: Lynn r

Subject: Re: New thread for rhona and bsk

Thanks ladies my jaw is still giving me a lot of pain but at the moment it's my shoulders and wrists I am waiting for my doctor phoning me today to give me the results of my bloods since being on mxt I hope there has been an improvemt on them x
I'm sorry that you have had to go back on your steroids rhona and bsk I now how you feel being scared to even hope you are having a good day although I do hope it is the meds starting to work x
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Date: 08.05.2012
From: rhona

Subject: Re: New thread for rhona and bsk

My jaw is bothering me today as well Lynn, it's not nice. I think sometimes the pain comes up from the shoulder, a good massage would help. I hope your bloods have improved today. Hope the enbrel is starting to work for you bsk that would be good. take care xx
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Date: 08.05.2012
From: Lynnr

Subject: Re: New thread for rhona and bsk

I hope the jaw is not giving you too much pain rhona my dr phoned me today said my WBC was still too low and not to take any more mxt I wasn't going to be anyways so I'm now waiting to hear from hospital if there is an earlier app it's a bloody joke I'm sick of the whole thing ....
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Date: 08.05.2012
From: bsk

Subject: Re: New thread for rhona and bsk

Oh Lynn! You really are going through it. I'm so sorry. xx
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Date: 08.05.2012
From: rhona

Subject: Re: New thread for rhona and bsk

Hi Lynn, That is strange when you haven't been on it for very long and it was a low dose, hopefully that means it will go back up quickly. It does start to wear you out, i hope things pick up real soon for you.I have noticed when i am on steroids it makes my white cells go too high, so i feel i don't really get an accurate result, i can understand why you are sick of it, i feel the same just now. take care of yourself. xx
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Date: 10.05.2012
From: Lynnr

Subject: Re: New thread for rhona and bsk

I know but it was exact same the last time I was on it it's like when I get infections all the time I need more than 1 antibiotic to treat it, also my own dr tells me 1 thing and other doctors at the practise tell me something totally different.

It does start to drag you down:(

Tc x
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Date: 12.05.2012
From: bsk

Subject: Re: New thread for rhona and bsk

Hi girls, how are you doing?

I'm starting to cut down the steroids but pain increasing rapidly. Also have rash at injection site again after second week. Exactly the same as last time. Hope this isn't bad news for me. Will have to let my nurse know on Monday I suppose.

On a more positive side, enjoyed sitting in the garden today, it was beautiful here.

What's happening with you both?
xx
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Date: 13.05.2012
From: rhona

Subject: Re: New thread for rhona and bsk

What dose of steroid are you on bsk? I started 5mg last week but not doing much for me. It may take a wee while for the enbrel to take effect before you can cut them down. I hope you rash settles down,you can probably get something to help that. I didn't get a rash with it but got very red around injection site. I think i will be getting in touch with hospital this week to see about the infusions, my hands have been so sore and swollen, so obviously what i am on isn't enough and my jaw hurts. It's like winter here today so that doesn't help.

Hope you are doing OK Lynn and your blood results are better this week.

Take care xx
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Date: 13.05.2012
From: Lynnr

Subject: Re: New thread for rhona and bsk

Hi ladies I'm just having a lazy day I'm in alot of pain I'm going to see about a steroid injections this week my rhumy nurse phoned me wed and said she would let me know when to go down to hospital but still no word from hernim hoping she calls me in morning it's like winter here again today it's so depressing to look out at I hope we get some sunshine soon.

Rhona I hope u manage to come to a decision about the infusions I know that it's not an easy choice, and bsk I hope you start to feel some benefit soon from enbrel and that the rash doesn't get worse.

Can't wait to get dinner then kids bathed and then bed for me

Take care x
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Date: 13.05.2012
From: bsk

Subject: Re: New thread for rhona and bsk

Are you both up north? We've had sunshine all day here in London!

Like Lynn glad you are coming to a decision Rhona. Hope it works for you. Ditto the steroid injection Lynn. I find them very good.

I'll talk to my nurse about rash/redness. Feel ok on cutting down steroids. Am determined to actually, unless I really can't manage.

xx
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Date: 14.05.2012
From: rhona

Subject: Re: New thread for rhona and bsk

Yes i am bsk and it is like winter, cold wet and windy. Lucky you getting the sunshine. take care x
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Date: 14.05.2012
From: Lynnr

Subject: Re: New thread for rhona and bsk

Yip I'm in sunny Scotland lol it's freezing up here I still have not heard a peep from hospital I'm so fed up with this whole situation I am getting stiffer by the day :( hope you are both well x
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Date: 14.05.2012
From: rhona

Subject: Re: New thread for rhona and bsk

I'm waiting to hear from them as well Lynn. I am so fed up not being able to arrange anything and feel my life is on hold just now, i just hope things change soon as i hate not being able to get up and go out when i feel like it. grrr, so i know exactly how you feel. take care and hope you get the jag sorted out soon xx
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Date: 14.05.2012
From: bsk

Subject: Re: New thread for rhona and bsk

I'm waiting to hear from them too lol! Let's hope tomorrow is a bit more productive for us all.

Where in Scotland are you Lynn? I was born in Glasgow. It's always freezing when I go up there!
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Date: 15.05.2012
From: Lynnr

Subject: Re: New thread for rhona and bsk

I can't believe the 3 of us r waiting on the hospital phoning lol I woke up this morning and could not move my hips are agony :( my rhumy did call me and she wants me to go and see the rhumy next frid and doesn't advise any steroids because he wont get to see me at my worst I am putting my pain patch on tonight it makes me sick but hopefully take the edge off this pain, I live about an hour from Glasgow x
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Date: 15.05.2012
From: rhona

Subject: Re: New thread for rhona and bsk

Hi Girls, I'm still waiting to hear from hosp. so stiff today and wrist very sore, my hips get sore as well Lynn, well it's mainly across top of legs and they said it's coming from hips. I was also born in Glasgow bsk and live just outside the city now.
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Date: 15.05.2012
From: bsk

Subject: Re: New thread for rhona and bsk

Well no wonder you are both complaining about the weather lol! I go up there when I can to see my sister who lives in the city and love it. Would move up there if not for the weather. Read on bbc there was snow in Scotland today.

No call from my nurse :(
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Date: 15.05.2012
From: rhona

Subject: Re: New thread for rhona and bsk

My daughter went to the top of Ben Lomond on Saturday and they had four seasons in one morning, rain,snow,sun etc. At least we don't suffer from water shortage here lol.
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Date: 15.05.2012
From: bsk

Subject: Re: New thread for rhona and bsk

We've supposedly got a drought but monsoon-like weather. At least I don't have to water the garden by hand. Though everything is several weeks late so it is looking very green but not many flowers out yet.
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