I hope you don't mind me chiming in here on your conversation but having just come off Humira after a year I just wanted to confirm what golitho has said so far, the syringe is much better than the pen. I didn't like the fact that with the pen you click it and the needle and medication goes in within a few seconds (you don't know when). At least you can control the syringe and it's really very easy once your shown how to do it. Taking your daughter with you is a great idea. Unfortunately I have only sons and a husband and all didn't like the idea of sticking a needle in me bless them, in fact they didn't like being in the room either. Mind you as I told them I wasn't that keen either. My specialist showed me how to do it and gave me a shoulder bag from Humira with a sharps container, wipes, travel pack, ice blocks and a diary to keep track of how your feeling over a 12 week period. All very useful so hopefully you will be given the same?
You should hear very soon if all paper work was put in last week so hang in there. .
ps. second remicade last week and the back is amazingly good, I even managed for a 'short while' to get on a kayak up the river at Huskinson at the weekend, it was the most wonderful thing to do and for the first time in 2 years I felt normal if only for a second instead of useless! A very emotional day for me as I was so happy. We have to grap the little things in life don't we. So I'm hopeful that I can do this again soon and if that's all I can do on the odd occassion that's fine with me... Mind you I ached all over afterwards but it was worth it.
Take care and look after yourself.
(((HUGS)))) for you golitho, Im sorry you are suffering so much lately, it can get very depressing feeling so bad all the time.
I wondered about menopause causing grief when it hits (although yours was surgically induced its due to hit me as Im 45 now UGH). Hopefully your Gyno can come up with a plan to make this better - although would this mean more medication?
Please let us know when you see your gyno and the outcome - will be thinking of you
Peggy - thanks for chiming in I did'nt realise you had tried Humira or I would have picked both your brains Glad you are doing so well on the Remicade Peggy, you are right about snatching those moments of wellness and running with them (so to speak) hopefully you get more and more of these moments with the Remi's help
I heard from my Gastro's secretary today and I got approval
I have an appt. tomorrow to see her and discuss taking it - hopefully she has more information for me than she usually does - if not guess who will be back here picking both your brains again - sheesh
Will let you know how I go tomorrow.
Thanks again to you both
Jo (feeling nervous now lol)
I will be thinking about you today, as golitho said 'go armed with lots of questions' another helpful thing was having my husband (or anyone) by your side as sometimes we're still thinking about the answer to a question when they keep talking and you might miss something.
Remember golitho and I are thinking of you and with you spirit if not in person. You always know that on this forum you can ask as many questions as you like.
Take care, deep breath and all will be alright....this is a good thing.
Just popped on to see how it went yesterday? Thought about you for most of the day as I've walked in those steps...Hopefully all over now and o.k about doing it yourself going forward?
NOTE: please be careful about visiting the suggested site suggested on several entries, could be a virus there, so many entries on RA for the same thing made me a little suspect on why we should all look there. I think know the site and the content so not bothering, having said that we are allowed an opinon and you must make your own..
Have a great day.
Hi Peggy and golitho,
I saw the gastro yesterday and it was just to pick the scripts up.
I then took them to the pharmacy and was told tomorrow and that they would call me. Well, I got a call on my way home to say that the starter kits were unavailable in pre-filled syringes and if I wanted to change to the pen (which were available) that I would need to take the script back to Gastro for her to get reapproval - the Pharmacist actually spoke to my Gastro who told her if I brought it back to her I would have to wait as she has a lot more patients to see (she is such a charmer).
I had a mini anxiety attack at the thought of going back in to see her - it was hard enough getting there the first time - so I told the pharmacist that I would just wait for the syringes to become available and if she would'nt mind finding out when that was.
The Pharmacist rang back and had tracked a kit down and now it's Monday I pick it up and I have an appointment with my Dr.s nurse at 10am Monday.
Sheesh - what a bloody drama - Im hoping it's not an omen of things to come.
Could'nt face coming on here yesterday due to being so annoyed .
Thank you both for the well wishes, will keep you both up to date.
I'm so so sorry Jo I can only imagine how you felt, I know the feeling of just wanting it all to go well and then something happens and it all falls to pieces. I believe you said you were from the blue mountains area before which must be different from my area when it comes to getting the drugs. I know the problems I had most months was getting them to get it in on time. Several times I would ring two days before needing to pick it up only to get there and they haven't done it OR it's been the end of the month and they thought they would wait until the beginning of the month just to make their books balance!!!! I used to have stand up fights telling them that these kinds of drugs can't just be taken as and when they want to give it, etc etc. Anyway I founda chemist that didn't complain how much it cost them to get it in and always ordered it monthly regardless. Just thought I should forewarn you that you need to ring them days in advance to make sure they have it.
Your right to wait for the syringe on Monday, now try (and I know it's hard) to forget about it until then, believe me when I say when it's over with and you've done it, it will seem easy and not that much to worry about.
Take care and have a great weekend.
Morning to you all,
I'm glad we've at least giving you the heads up as to what to look out for, mind you it may not be that way for you. A trip down to Kiama will do you good and the weather is wonderful. I'm glad you gave me the heads up on the sun and Mthx drugs, I was only in an open top car the other day for no more than 10 minutes and I got burnt on both arms, fortunately not bad but noticeable as my sister told me off! She saw it on the skype camera. lol. I now put lashings of cream on (not that I didn't before - just more of it). Gilitho I agree with Jo - don't be so hard on yourself, you can only do what you can when your body allows it, it's not the end of the earth if some jobs just don't get done.
I have to say that the remicade has certainly kicked in, the back is about 70% better, getting out of bed is almost normal now instead of hanging on to furniture and making those, as my husband fondly calls them "old lady noises" . More to the point I feel better in myself, more positive in my head so that's good. The ankle/foot is still the big problem but I'm hopeful in time that there will be some relieve there within the coming months.
Well must away, my lovely husband is taking me out for a drive and coffee in the sunshine.
Have a fun weekend, be kind to yourselves.