Well D Day arrived......

I had a phone call the evening before from the nurse to say what time she would come (didn't ring until 8.30pm I thought she'd forgotten about me). She said she would arrive at 10.30 and I was to take the drug out of the fridge at 10.15. I asked how long she would stay afterwards and she said the protocol was 30 minutes but she realised that I was anxious and her next appointment wasn't until noon she would stay until 11.45.

I got everything ready for her, sat there and waited and waited. She was late! I said to my husband that it was like waiting to be hung.....he told me to have a drink (alcohol) because that's what they use to do before someone got hung. Didn't think that was a good idea swaying and smelling of booze when she arrived.

She finally arrived at 11am apologising for being late. We sat down and she started to ask me questions. Did I feel well? Had I been told of the possible side effects? Replied telling her that I had read about everything I could lay my hands on about the drug and reeled off the most common ones. She then asked for the letter that was in my pack when it arrived FAO of the nurse...........what letter! I hadn't seen one. Panic stations, it was the prescription with the dose on it. She couldn't let me inject without checking I had been sent the right dose. I gave her what paper work I had, she said it would of been in the plastic bag with the drug. I am positive that there was no paper work in, just two boxes of drugs, but I sent my husband to rummage around in the dustbin for it. She then phoned up Health Care At Home, she was put on hold and then cut off. I was at the same time ringing up consultants secretary, that went on to voice mail, rang specialist nurse up, that went on to answer machine, husband couldn't find the envelope, thankfully after phoning again she finally got to speak to someone at Health Care At Home and everything was right. So anyone reading this about to start....................make sure you find the letter!!!!!

After all of that I just wanted to get it done, I was aware that she had another appointment at 12 and I was getting worried that she would have to leave soon. I got myself sorted and did it. I didn't feel a thing, it didn't sting at all, the deed was done!

She didn't leave until after 12, in fact I more or less told her it was OK to go, saying that she was going to be late for her next appointment. She asked about if I needed another appointment the following week. I told her I thought I was OK, she did agree, saying that she could see I was confident in injecting myself. I had been told that I would have someone next week, so she advised me to not to decline it. So I will be having someone next week just to watch me do it again. She checked to see if I had a rash before she left but nothing was there.

SOME INFORMATION THAT SHE TOLD ME THAT YOU MAY FIND INTERESTING

I had told her that I have read a few post on the forum from members who have had some sort of reaction immediately when they have had an infusion. She said that when you have an infusion the drug is put into your vein and in matter of seconds it is pumped around all areas of your body and this is why some people have an immediate reaction. When you inject it into your stomach/leg it is absorbed alot slower. She's been doing this particular job for two years, her department covers the East Midlands and she's not heard of anyone having a reaction like this from the drugs that we do by injection. She did say that she does carry with her a pen incase we do go into anaphylactic shock, she's got antihistamine drugs in her car, along with oxygen (glad she didn't walk in holding an oxygen cylinder).

I asked about air being in the syringe. It does say on the instructions booklet to get rid of any visible air bubble in it by pushing the syringe up abit to dispel it. She told me that the latest advice is to leave it, the air actually helps the drug to be absorbed better.

She told me not to inject near my tummy button. I asked why..........the skin around the tummy button is more grisly and it is harder for the needle to go through, I am now wondering if that is why sometimes when I've injected MTX its hurt slightly, I always tend to inject in that area.

She said anything that happens regarding a side effect, no matter how or what it is I must report it to my hospital. Even if I get a small rash from inject I need to tell them. I knew that I will now be put onto an anti tnf register, but she said anything that happens to me will be recorded on it. She even went on to say that if I fell and broke my wrist this would be classed as a major incident. I queried why..........if alot of people on anti tnf reports that they have broken their bones in a fall, then this would point to the fact that taking anti tnf's weakens your bones.

Well. it is now over 24 hours since I injected and I feel totally fine. No rash, nothing at all. I did go shopping yesterday afternoon and have just spent several hours with my daughter at a designer outlet not far from where we live, really enjoyed myself.

I will blog again...................sorry it's been along one................I can talk the hind legs off a donkey...............looks like I can blog the hind legs off one as well.

Paula xx

Well done Paula - you've been amazingly brave and tough. What rotten luck to have had all that worry with the nurse, I feel so cross on your behalf - you'd done everything you possibly could do and it's hard enough coping with all the nasties that RA throws at us without having to deal with professional incompetance too. Clearly you needed all your patience and perseverance to get it done in the end, so very well done indeed - next time will be a walk in the park! And then just think ahead to getting your RA under control and feeling loads better - hugs from Sylvia xx

The only way I cope with delays like that is to think that the previous
person may have needed the time more than me. Its different if they start work late
none of us is (are?) perfect. Glad it went okay anyway. Take care Anne

Well done Paula!

My hospital would have a fit if people rung up with every tiny rash or side effect, lets face it I'd be on the phone all day! lol

Never mind, it's fine on you and that's the main thing.

I loved enbrel, within 24 hrs I felt different
It's a powerful drug but this is a powerful disease and for so many it's given them their lives back

Hope you're well today

Sounds as if it could be working Paula
The first time I had Enbrel I felt somewhat better the very next day! I was told it often works quickly in severe cases.

Hope things continue to improve for you
Diane x

Lovely news Paula :)

Seriously, sounds like you've got an excellent rheumatology team.

I really hope the improvement that you're feeling continues. This gives us all hope, XXX

Hi Paula,
I've started to read this a couple of times,with interruptions, but made it at last!!
I'm so thrilled for you and just in time for Christmas!!
Thought I'd share my first experience of HCAH with you.
Like you I had the phone call the evening before and the time was set for the next day.
Took the Enbril out of the fridge 15mins before the app. time. Then I waited and waited and waited!!
After 2-3 hours, by which time it was late afternoon, I rang HCAH to ask if there was a prob.
Sorry they said the nurse who was coming to you is off sick!!! Obviously they had forgotten about me!!
I explained that I had the inj out of the fridge ready, then it was a big performance to get in touch with a pharmacist to ask how long it was ok to still use it. He said it would be alright for up to 72 hours.
Eventually an app. was made for the next day.
Just wondering if you have your mtx inj delivered by them. Twice I have had problems with deliveries, with them saying that they have not received a prescription from my hospital. Both times eventually I have had to ring the hospital myself to get it sorted.
I now get 8 mtx inj delivered each time, much better.
Hope you continue to get better and better.
Zena xx

Paula
Lovely to read your blog, you sound like you've rediscovered freedom/new lease of life!
Its go that you've decreased your tablets from 70 a week.
Does a nurse come round to help you inject with anti tnf in the begining?
Not long till your holiday? so pleased for you, make use of your new zap of life.

Lovely to hear from you.
Xxx

Hi Paula

It is so very, good to hear you sounding so upbeat and feeling much better:-) Sometimes I think we can get used to feeling awful and when we do feel better it's like being let out of jail, so free - or so I imagine not having experienced that!

Long may it continue and get better and better, and have a wonderful time with your family abroad at Christmas:-)!

Take care,
Lizxx