IV steroids next week

As5567 · 2. Mar 2013, 15:58

I'm due to have IV steroids next week over the course of the week (5 days) Today I have woken up with no pain, no stiffness and feel "normal". My question is despite feeling better suddenly would you still have the steroid treatment or not. I'm possibly due to start a new medication next week also, the reason I say possibly is because I don't really think that it's the right option for me and I know that there are alternatives out there. It's just a matter of cost and hospital rules. Currently the hospital pays around £1500 for my medication monthly, the medication I want costs around £800 monthly. The medication they want to give me costs £200 every 6-8 weeks so I can see why this is the preferred choice for them.

Hopefully I will get uninterrupted nights worth of sleep again tonight and feel as good again in the morning

barbara12 · 2. Mar 2013, 16:19

Hello As5567
I do wish I could help with some advice, but has I have OA I'm afraid I cant..but I do wish you well with whatever you decide...its a bit quiet on here tonight..hopefully someone will be along with more advice very soon xx

stickywicket · 2. Mar 2013, 18:24

I know you didn't want the steroid treatment but I do remember you saying only a couple of weeks ago that your arthritis was worse than it had ever been. In such emergencies I think steroids are the normal port of call though usually it's oral steroids or a jab. You could discuss it with the docs before you go in for the steroids but do bear in mind how you felt only a short time ago and how you will feel if you get so bad again having refused the steroids. I assume the new treatment will, like most, take up to 2-3 months to kick in. At the end of the day, only you can make this difficult choice.

As5567 · 2. Mar 2013, 18:58

Thank you both for your replies. I think I have some difficult decision to make over the next week in regards to my medication, can be very confusing knowing what this disease is doing sometimes! I wish there was some way to tell if things are about to get better or worse.

As5567 · 2. Mar 2013, 19:02

stickywicket wrote:

I know you didn't want the steroid treatment but I do remember you saying only a couple of weeks ago that your arthritis was worse than it had ever been. In such emergencies I think steroids are the normal port of call though usually it's oral steroids or a jab. You could discuss it with the docs before you go in for the steroids but do bear in mind how you felt only a short time ago and how you will feel if you get so bad again having refused the steroids. I assume the new treatment will, like most, take up to 2-3 months to kick in. At the end of the day, only you can make this difficult choice.

Thanks for your reply. Been thinking about how I feel, I guess I feel much better today but looking back on things I'd say I feel much worse than I otherwise would on a normal day, I guess I'm just feeling much better right now as I'm in nowhere near the amount of pain that I was in. I think I will probably press ahead with the steroids if I'm having the new medication as I think this was part of the plan to make the transfer over to the new medication as painless as possible, I guess without there would be a high chance that I’d go into a bad flare again.

stickywicket · 3. Mar 2013, 05:22

I think one of the difficulties is that the pain grinds us down so much that decision making becomes really hard and every one looms like a mountain in front of us. I suspect there isn't a right and wrong one, only a better or worse. Good luck with yours.

maria09 · 3. Mar 2013, 06:55

Hi
It's difficult to decide what treatment to have or not
For me at min nothing works so they are following the NICE guidelines to see what works and what doesn't until they need to go down the really expensive treatment route
Do you have a rheumy nurse? Mines really good and can ring her anytime
If you have one its worth asking her advice
Hope all goes well for you
Maria

As5567 · 4. Mar 2013, 17:02

Decided to press ahead with the steroid option, got off to a bad start and ended up coming home without treatment. To cut a long story short they had trouble getting me lined up as I have terrible veins, to top things off then I decide to have some funny turn where I passed out. After all of that drama was over and the line was finally in they began to pump in the steroids, within 5 mins my arm was really burning and all swollen. Turns out that it wasn’t in tidy, hopefully things will go better on the next visit!

stickywicket · 4. Mar 2013, 17:08

I do hope so. That's exactly what you don't need when you've had to steel yourself to do it in the first place. I'm so sorry. I hope you're feeling a bit better now.

As5567 · 5. Mar 2013, 06:20

stickywicket wrote:

I do hope so. That's exactly what you don't need when you've had to steel yourself to do it in the first place. I'm so sorry. I hope you're feeling a bit better now.

It seems all of the stress was worth it for the little amount of steroids that I actually managed to get, just goes to show that I must really need them because I woke up today and was thinking wow...I could get out of bed right away without any stiffness or pain. That’s probably a first in a good few years, all the more reason to go back now and complete the course of steroids. Just need to try and limit myself today and try not to do much as I suspect the way I'm feeling won't last for long with the amount of steroids I got (roughly 10ml out of 250ml)

stickywicket · 5. Mar 2013, 14:09

Woo hoo! Enjoy them. Make them last

IV steroids next week

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