Date: 26.10.2014
From: Helen
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Subject: sorry. not been here for few mths
Hello everyone. Not been here for a while been a bad couple mths I hope by December to be starting with some treatment for PsA. No treatment since Feb. Have had lots of tests done due to becoming breathless again. My Dr has referred me to iron difiency nurse liver scans ECG rheumatologist has sent me for lung function chest xray and lung&liver CT. Scan on elbows wrist hands. All drs consultants are gonna get together and decide if arthritis is causing anemia again. Crp levels increasing so he said he will treat me again. Fibromylargia is a pig of a disease so with PsA&fibro iv not been doing much apart from sleep. Hope to get back into posting again.oh my liver has been damaged by sulphazalizine and hasn't repaired as they did think but two yrs and still the same. Unsure what treatment but iv had 3dmards consultant thought about two drugs one being an injection. But have had 3 dates now they keep being cancelled this rate its gonna be January.
Hope everyone is keeping okish.
Helen. Xx
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Date: 26.10.2014
From: bsk
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Subject: Re: sorry. not been here for few mths
Sounds as if you have been having a rough time and I'm sorry to hear it. Can I ask how long you were on the Sulphasalazine? I got raised enzymes on the drug and had to come off it, also Leflunomide. I have a few options left but not many so I understand where you are coming from. I hope they can get you on something that works soon. Also for myself. xx
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Date: 27.10.2014
From: rhona
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Subject: Re: sorry. not been here for few mths
Hi Helen, That's a shame that things have been so difficult for you, let's hope they can get something sorted soon for you and you start to feel better. It is a worry when we get side effects from the drugs. I have been on sulphasaline for years but I suppose they affect us all differently. xx
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Date: 27.10.2014
From: Helen
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Subject: Re: sorry. not been here for few mths
Hello bsk.
I was put on sulphasalizine for my first drug in the September2012 by middle November it had attacked lypmh nodes kidneys liver. So had to go into hospital felt really I'll. Then following march mtx which upset my breathing but now not so sure as breathing bad again so thinking anemia. So just had lung ct scan. Then December2013 put me on lefluomide which caused constant itching stratching causing me to bleed and scab. So in two years my liver hasn't repaired its self. Now I'm aneamic again further tests have and are being done to find out if its the arthritis causing it or liver as last year had all bowel&upper checked all OK. So December this year I hope I can have some treatment. Last march consultant said fibromylargia was over taking the arthritis but since October visit he's changed his mind and said he will be treating me this time.xxxxxxxx
Thanks rhona
I think your right how some drugs work for some than other people. Iv weaned myself off pregabalin which is a pain killer. In a year I'd put on so much weight put it down to less mobility slow mobility no work etc etc. Anyway consultant said I was overweight that didn't help my joints even tho I'd had joint problems before extra weight. So in June I spoke to own gp and weaned myself off them so since then if lost 3st 4lb. Joints still bad but I feel better fitting to size 14\16 again. Yippee
Hope you are both okish and thanks for reply and still being here.
Xxxx
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Date: 27.10.2014
From: bsk
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Subject: Re: sorry. not been here for few mths
Gosh, that sounds pretty awful. You've done well to lose weight with all that doing on. I was only on Sulpha and Lef for a few weeks as my liver didn't like them. I hope yours recovers.
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Date: 27.10.2014
From: rhona
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Subject: Re: sorry. not been here for few mths
I know what you mean about the weight, Helen. I have put on 2 stone since I started the rituximab. Don't know if there is any connection, although my thyroid tablet has been cut from 150mg to 100mg. I don't think I eat anymore than I ever did so think it must be one of the other. I too am now a 14/16. xx
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