Date: 08.12.2014
From: rhona
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Subject: Colin, Linda. Helen, Deborah & everyone else
I guess everyone is busy with Christmas approaching but I was wondering how everyone is doing. Some of the people that would often post haven't been on in ages so I hope you are all keeping well. This message is meant for everyone on the forum. xxx
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Date: 08.12.2014
From: Julie
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Subject: Re: Colin, Linda. Helen, Deborah & everyone else
Hi Rhona, it has been quiet on here for a while. I myself am on my toc trial. Inject once a week but have been told now that due to staff shortages that I am going to have to do the injection myself, they know how I felt about injecting mtx, couldn't do it in the end and went back on tablets. When they asked me to go on trial they said not to worry about the injecting that they would do it for me - yeah I don't believe you!!!! The drug up to now has given me some improvement, but we have just moved house last week and I know I have been trying to do too much and I am suffering. But Christmas is coming so might as well continue overdoing it till New Year!!!!! How are you, hope you are feeling okay and coping with all the extra jobs that we do at Christmas.
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Date: 08.12.2014
From: rhona
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Subject: Re: Colin, Linda. Helen, Deborah & everyone else
Hi Julie, Nice to hear from you. It is a thought having to do it yourself. I remember the first time I had to inject the Enbrel, it took all my courage to eventually stick it into my leg. It does become easier. My daughter is diabetic and injects herself a few times a day and thinks nothing of it. I hope the toc. works well for you. I think that might be the one that Colin is on. Good luck with the new house. I can only imagine how much hard work that must have been but hopefully it will be well worth it. I'm doing ok. I had my 4th course of rituximab last month and it has really helped me. Take care and lovely to hear from you. xx
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Date: 12.12.2014
From: Deborah
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Subject: Re: Colin, Linda. Helen, Deborah & everyone else
Hi Rhona and everyone,
Hope everyone is well.Sorry haven't posted on here in a while just have been so busy.
Rhonda my lovely husband of 29yrs Adrian died in may of this year with a massive heart attack.He went to work as usual and died at work it was such a shock as he was a big strong man and very healthy and had no problems with his heart.I never even got to say goodbye as he was away to work before l got up. My world has been turned on it's head and am now on my own as the 2 boy's have their own families.That's why l have been so busy.But thing's have calmed down a bit and although l wasn't looking forward to Christmas l find that it is taking my mind of thing's. So just have to get on with life. On the plus side have been on golumimab for well over a year and it has really helped me but still am on mtx 25mg weekly as well the consultant tried to reduce it but it didn't work so am back on it don't mind would take anything for the pain.
Still get bad day's but am on my own and at least can lie down if l have too. How's thing's with you Rhona? do hope your keeping well..Hate this cold weather although the heat is really sore on me it's definitely worse on me. Are you all sorted for Christmas?
Hard to believe it's nearly the end of another year. All the best Ronda and to everyone else on here.
Deborah xx
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Date: 12.12.2014
From: rhona
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Subject: Re: Colin, Linda. Helen, Deborah & everyone else
Hi Deborah, I am so sorry to hear about your husband, that must have been a terrible shock for you, especially with it being so sudden. They say it is the best way to go but it's a terrible shock for the family when it's as sudden as that. I'm pleased to hear that the golumimab is helping you, as I know, like myself, you were suffering for a while. I am on rituximab and it has really helped me, I just hope it doesn't stop working as I would hate to go back to the way I was. I am reasonably organised for Christmas although I still have the wrapping up to do and then the food shopping. I have done most of my shopping online, I used to love going round the shop at Christmas time but I can't say I enjoy that anymore. It is usually too cold. My daughter will be home from Spain next Saturday for a couple of weeks so that will be nice. I hope you continue to keep well, Deborah and look after yourself, give yourself some nice treats, I went to the hairdressers the other day and it does help to lift the spirits a bit. It has turned really cold here. I had a dental appointment this morning and my path was so slippy, I ended up walking on the grass as I'm always terrified of falling. I would never get up if I did. Have a lovely Christmas and keep in touch. xxx
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Date: 12.12.2014
From: Deborah
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Subject: Re: Colin, Linda. Helen, Deborah & everyone else
Hi Rhona,
Thank you so much.
I am so glad to hear that rituximab is helping you and may it continue to do so.
Like you if my drug stopped working l would hate to go back to the way l was it just maker's you realize how bad we both were. Just only hope they don't cut funding for the drug's but we'll not think about that. Hope you have a lovely time with your daughter when she is home. Yes Rhona my husband was a terrible shock in fact still feel's like l am dreaming and wish l could wake up.But at least it's a bit easier than it was. Christmas has took my mind of things and have booked myself away to Belfast for the new year which l am looking forward to that. So yes will keep in touch and have great Christmas.
Deborah xx
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Date: 12.12.2014
From: Colin W
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Subject: Re: Colin, Linda. Helen, Deborah & everyone else
hi guys , Deborah feel so sorry for your family , we had a death in our family in May this year , my inlaws live with us & my Father-in=Law had suffered from parkinson disease & died suddenly , facing Xmas without him will be strange & non of us are looking forward to it . as for myself , 2014 been pretty crap , not been able to have tocilizumab since end of September because of problems with my legs , suffering from cellulitis & with very swollen legs & now got Leg Ulcers on both legs , , for some reason tocilizumab just has not worked & still on high dose steriods & hope to try rituximab in the new year when my Ulcers have cleared up
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Date: 12.12.2014
From: Julie
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Subject: Re: Colin, Linda. Helen, Deborah & everyone else
Hi Deborah, so sorry you lost your husband it must be so hard for you I cannot imagine how I would cope. I hope you get some joy from Christmas and it isn't too hard a time. Take care and look after yourself. Hi Colin so sorry the Toc didn't work and ulcers on legs is not a nice thing to have, my mum had them and found them very painful. Maybe it was a side effect from the Toc. I have just had my 4th injection and feel a little bit better but my knees are still so painful, probably nothing to do with RA at all but maybe damaged when I fell years ago. We have moved now and I will admit moving to a bungalow was a good idea, (not the actual moving though!!)Still miss my countryside views from my bedroom though, the views here are nice but not as pretty. I hope everyone has a good and pain free Christmas and 2015 is the year a cure is found.
xxx
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Date: 12.12.2014
From: rhona
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Subject: Re: Colin, Linda. Helen, Deborah & everyone else
Hi Colin, Sorry to hear that things are not so good with you. My husband was in hospital earlier this year with cellulitis and it wasn't nice. His legs still look very swollen and discoloured. I hope the treatment is getting it under control and then you can try the rituximab. This could be the one that would suit you too. I will be glad to see this year out as well Colin. That's good to hear that you are going to Belfast for the New Year, Deborah, it should do you good to get away. Funny, Belfast it on the news at this exact minute, David Cameron was there today. Take care everyone and have a good weekend. xxx
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Date: 14.12.2014
From: Deborah
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Subject: Re: Colin, Linda. Helen, Deborah & everyone else
Hi Colin,
Sorry to hear of the passing of your father in law it is so strange when someone leaves the house and you know their never coming back. l really do miss Adrian my husband and it is strange getting used to living on your own.My son's are coping well but l suppose they have their own families to keep them busy. l was wondering how l would cope as Adrian looked after me and did a lot but on the plus side my arthritis is pretty good at the minute but don't want to think about how l would cope if it wasn't. Sorry to hear that you have been going through a bad time Colin how are they treating your leg ulcer's?
There is a treatment you get in the hospital where they put a dressing on and keep it on for five day's or more and when you take it off it should be healed.Don't know what it is called. I do hope you are able to start your treatment soon and take care of yourself too. Hi Julie,
Thank you and hope you have a good Christmas and a pain free one too. Hi Rhona,
That is strange Belfast on the news lol.
They say great minds think alike so Mr Cameron decided to visit too so hopefully l have made the right choice lol.
Yes am really looking forward to it.. Hope your husband is keeping ok at the moment Rhona.
And you have a good weekend too .
Deborah xx
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