Hi everyone who has been following my posts. I just wanted to let you know I finally have a date for my first infusion. 9th June, which is next Tuesday. I can't wait!!! Yippee!!! I will take on board all the advice everyone has given me. I will drink loads of water to help stop headaches, I asked about the antihistamines and was told they have them at the hospital if I need them. If I am to have an allergic reaction it usually happens at the time of the infusion. Fingers crossed this drug will work for me as it has for others who call it a wonder drug. The warfarin clinic gave me 7 weeks before my next blood test but asked me to give them a call so they can give me another blood test a couple of days after to check if the infusion effects my INR reading. I hope it doesn't as my readings have been very much the same after 6 weeks.
I hope everyone is feeling well, the heavy rain and strong winds haven't helped with my flare ups, hopefully not for much longer. We are to have a heatwave next week, yippee!!!
Goodnight everyone, hope you all have a peaceful nights sleep. Take care, Sue xx
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Hi Sue Congratssssss I am really pleased for you know exactly how you feel. I hope it works and then you can get your injections. Keep us updated, this is the best biological I have had, I had absolutely no sideffects. You take care.
Thanks Bats, you would think I was getting the best Christmas prezzy ever when I got the call today. The pharmacist asked if I could make the spot, I said just let someone try to stop me, I will be there after waiting 3-4 months from beginning all the mandatory test and the 2 to test which failed and I had to wait 5 weeks to see a specialist whilst I am going through the worst flare ups, you bet I will make that apt.
Sorry Shaz, that should read appointment, and the other spelling mistake should read TB test that failed... I guess I have been so busy letting all my family and friend's here in the UK and in Canada as they have been waiting with me for the date to come. It is a relief for them as well as me, it is great to have so much support from everyone.
Hi Bas, thank you for your best wishes. It is good to hear all the positive responses, I hope it continues to work for you. I have how a number of people are calling it the Wonder drug as they have had such a good response with this drug.
Hi again Bas, I forgot to say all the best on the 11th. I hope you continue to improve. In was told it takes 12 weeks to get fully in to the system but most feel a great improvement after just 2 weeks. I hope I am that lucky too.
Hi Bas, at the moment I am not too bad, feeling stiff as usual, especially in my neck and TMJ which I have had on and off for years. It is the really bad flare ups that I have are worse. Some mornings I feel I can't get out of bed, so hopefully, after next Tuesday, they will become less and less.
Thank you again for your best wishes, I hope all goes well for you and enjoy your weekend too.
Good luck, It's been great for me You'll need to take a pee sample with you and have a blood test a couple of days before hand or they won't do the infusion. xxx
I checked with the Rhuemy Clinic, I don't need to take a pee sample with me as that and my bloods have been done already at the clinic, I was told I could take a pee sample with me just in case. I would hate to get there and they said I wasn't able to have the infusion for reasons you said. I guess all clinics do things differently.
Great news. I've been taking it for 8 months now and I can't believe the changes its made to my every day living and my quality of life. If it works, its amazing. Good luck.
Thank you everyone for all your support and kind words, I really do appreciate all the advice with my ups and downs over the last several months.
Wishing everyone well, this site is wonderful, it really does help when you think you are alone to find out their are many who suffer in the same or similar ways and they still find the time to help others no matter how much pain they are in themselves.
Thanks everyone for keeping fingers crossed. You are right allanah, it is fabulous news, hopefully it will work for me and then I can spend time with my son d-in-law and g- daughter's in Canada later this year. I now feel I something to look forward to, a light at the end of the tunnel. I have tried my best to keep a positive attitude throughout.
Keep well everyone, hope the good weather will help everyone feel better.
Take care, and thanks again for all your support. Sue xx
Thanks LS1957, it will give me my life back if it does work. Plus a wonderful time in Canada with my son and his family whom I haven't seen for over a year apart from Skype. Not quite the same when I can't give them gentle hugs.
Take care, each day gets me that little bit closer to Tuesday. xx
sorry reply was short the fatigue still hits you like a brick - but little or no pain for the most of the time x advice would be drink plenty of water the day before and during the treatment and after to keep the headaches away - I was terrified of the treatment and the thought that it might not work so I know how you feel keep me posted x x 😄
LS1957, I will keep in touch with everyone. Shaz also advised drinking plenty of water. I do drink mostly water every day. I bought a large bottle of water to take with me, I usually have the smaller bottles in a 12 pack as they are easier to carry around with me. Several have said even though the actual infusion only takes about an hour, they have been at the hospital for about 4-5 hours in total. I am prepared just in case.
Thank you for your response, it is very much appreciated. I understand how the fatigue can hit, I had one of those days yesterday, I found it so hard to keep awake, it was an early night for me.
Take care, I will be in touch after Tuesday. All the best to you. Sue xx
Thank you LS1957, I had my tocli infusion this morning at 10.30am I had no reaction whilst having the infusion, I was told go straight home and rest and I should be fine. So far so good. It is almost 3pm and I don't have any sign of a headache either. Hope I am not speaking too soon. I drank lots of water yesterday and today as advised. I am happy to say it all went well, only time will tell. I hope everyone is feeling better with the lovely weather. Take care, Sue. xx
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