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Rank: Advanced Member  Groups: Registered
Joined: 12/8/2009 Posts: 124 Location: Wolverhampton
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Hi everyone, its been a long time since I was last on this site.
Just wanted to update you all on my RTX journey. I had my first treatment (two courses) of rtx on 30 September/14 October. Have been waiting patiently to see what will happen. Haven't felt any great improvement, but you never know what is happening on the inside do you?
Saw my biologys nurse couple of weeks ago for 12 week update - my esr has gone up to 71 (5 Jan reading, from 35 - 23 Dec reading) and my crp has gone up to 54 (again 5 Jan reading, from 23 - 23 Dec reading). Nurse was stumped - not what they were expecting at all. So in the short term, I am to have two steroid infusions (one gram each) which took place last Wednesday and Friday - still don't feel great, struggling to walk etc - gotta go to work tomorrow, but don't feel like it. Also have to start on leflunomide think dose is to be 20 mg on a daily basis. Whilst having my steroid infusion last Friday, saw my consultant who seems a little perplexed as well, he requested anti ccp blood test and wanted me to have bloods take for haemoglobin (sorry if I have spelt anything badly).
So I'm wondering, do I have RA or something else? If something else, what could it be? Am so jacked off with this all, feel like crawling into my bed and never leaving.
Nina x
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Nina
I am sorry that you are having such a difficult time at the moment, I do not know anything about RTX, I m sure many will. I hope the leflunomide helps the inflammation, looking forward to hearing from you soon.
Best wishes Julia x
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Hello Nina - hope the news meds work quickly to get your inflammation down again and you get some answers soon about what is going on xx Ailsa
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Nina
So sorry that things are not easier for you. You see to have stumped the
Consultant as well. I do hope you feel better soon
Rose
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hey Nina, Hi! Lovely to see you posting again, I often wonder how you are doing. Sorry to hear that things aren't improving for you with the Rituximab and you are having Leflunomide added to the mix. I had it added (already on Enbrel, Naproxen, Prednisolone and a trough full of other bits!) about seven weeks ago but at 10mg and so far it hasn't made a scrap of difference. Do hope you have more luck than me. Are you sero-negative or positive? I'm negative, and often blood results don't give a true picture of the RA making it very difficult to manage. I understand how you feel, I had a horrible time of things last year and I don't really seem to have got back to where I was. It does get you down no doubt about it. Hopefully when the results of the anti CCP come back the consultant will have a better picture of what's going on and will be able to treat you appropriately. There are so many auto-immune related illnesses often bearing similar symptoms so hoping they will be able to sort things out for you quickly. In the meantime I hope you are feeling some benefit from the infusions. I used to love having those ... almost felt as though I was improving as the drug went in! How are those two men in your life? Keeping well, I hope, and looking after you  Do keep posting and let us know how you are Nina, Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Nina, hon, you haven't got an infection have you? No-one knew why my ESR and CRP shot up into the hundreds and then they remembered I probably still had the shingles virus hanging around (from 3 months ago!)
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Nina,
Sorry to hear that things are not going well for you.
Hope the steroid infusions help.
Love, Doreen xx
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Rank: Advanced Member Groups: Registered
Joined: 12/8/2009 Posts: 124 Location: Wolverhampton
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Hi all, resurrrecting this old post.
I saw my consultant at the end of March and have been told the anti ccp has come back positive so the dx is correct. I am seeing biologys nurse on 19 May to go through next treatment. Also saw gp (not the usual one) last week and showed me letter from hospital stating that the anti ccp was "strongly positive".
What does this mean, other than I deffo have RA?
Big gentle hugs to you all, and looking forward to seeing many of you on Saturday.
Nina xx
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Nina I was wondering the same as Jean. I had shingles a couple of years ago and didn't have a rash. I had a sharp stabbing pain behind my ear and they rushed me off to hospital urgently thinking I had mastoiditis which is very serious. It turned out to be shingles which surprised everyone because we all expected a rash so it just goes to show that you can get infections and not always know it. Mention it to your GP if you are not at rheumy clinic for a while. Good luck Sheila x
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Rank: Advanced Member Groups: Registered
Joined: 12/8/2009 Posts: 124 Location: Wolverhampton
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Hi there,
Not aware that I have an infection, next time I go to gp I'll ask the question. May ask the biologys nurse when I see her on 19 May.
Nina
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Rank: Newbie
Groups: Registered
Joined: 12/7/2009
Posts: 9
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Hi,
I had two courses of RTX. The first one lasted about 7 months. I felt a slight improvement. Then last year I had another course. I had a brilliant 9 months. Almost forgot I had RA. So when it started to wear off I went in for another course. After about a half an hour my throat started to get sore and I had a rash on my neck. They stopped the RTX and said i couldn't have it again. I was so upset because it worked so well for me. I'm now back to square one. I've started on Hydroxychloroquune.
Hope it goes as well as mine did for you.
Doreen W
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