New medication

As5567

Had an appointment to see my rheumatologist today, after being examined and some x-rays he decided that my arthritis was too active on my current medication. I'm not too happy about the new medication and I told him this, he suggested I try it out for 3 months and see how I get along.

I have gone from 1x weekly Humira and 1x daily arcoxia to 1x weekly 20mg Meth 1x weekly Humira, 1x monthly Remicade IV infusion. And to go along with the meth 1x weekly folic acid and anti-sickness for 3 days after the meth.

I asked could I be put on a drug called "Simponi" and he said no, the reason being is that the hospital no longer wants to fund my medication and is transferring me to my local trust ASAP. This of course was unexpected news to me as my local hospital trust has a very bad rheumatology department and that was the whole reason why I changed.

Overall a pretty disappointing appointment. Has anyone here ever been on similar type of medication combination? I guess I will just have to hope things have changed at the other hospital in the last 10 years or so.

stickywicket

I’m sorry you weren’t happy with your appointment. It does seem a big hike in meds but, on the other hand, you said in a previous post that you’ve been having a very bad time for 9 weeks and, to all intents and purposes, can’t walk. That needs the big guns, I’m afraid. At least it wasn’t the intravenous steroids which you’d feared.

The thinking is usually to knock the thing on the head as hard as necessary and, clearly, your people thought this was necessary.

I can’t comment on the transfer to your local trust or why they didn’t want to use Simponi (which is, I believe, golimumab). Maybe there’s an order for these things. I know some of them can be hugely expensive and that might come into the equation.

Anyway, I hope it works for you. That’s the main thing. And that your local trust has improved while you’ve been away.

As5567

stickywicket wrote:

I’m sorry you weren’t happy with your appointment. It does seem a big hike in meds but, on the other hand, you said in a previous post that you’ve been having a very bad time for 9 weeks and, to all intents and purposes, can’t walk. That needs the big guns, I’m afraid. At least it wasn’t the intravenous steroids which you’d feared.

The thinking is usually to knock the thing on the head as hard as necessary and, clearly, your people thought this was necessary.

I can’t comment on the transfer to your local trust or why they didn’t want to use Simponi (which is, I believe, golimumab). Maybe there’s an order for these things. I know some of them can be hugely expensive and that might come into the equation.

Anyway, I hope it works for you. That’s the main thing. And that your local trust has improved while you’ve been away.

Hi stickywicket, thanks for your reply. I forgot to mention that I would be going to a day unit for 3x days in a row within the next week or 2 for intravenous steroids, but I'm quite happy to do this now because from past experience I know it will temporarily fix my up for a few weeks at the minimum while the new medications get chance to kick in. I have also been doing some research and can see that many people take Humira + meth, so I'm going to try and call my doctor and see if I can try that out first before trying this new drug. I just simply don’t like the thought of IV infusion every 6 weeks when I have very very bad veins and will have a hard time getting a regular person to take me. It is recommended to take someone as the drugs given with the new drug can cause drowsiness etc.

As for the golimumab I know that the hospital do fund it but they won't for me because they want me to transfer asap. It’s a shame that it comes down to money before care these days, but I guess this is the only way the NHS will survive. I guess someone like me is a big cost to them each year.

On another note, I did attempt to take my meth last night. Took my anti sickness around 10:30 and woke up at 7am :S I think the 8 hours stuck in the hospital and the anti-sickness drug which does say may cause tiredness knocked me out for the night lol.

trepolpen

what level Mtx you taking & how much folic acid ,

myself on 25mg Mtx + Sulpha & should start golimumab in next few months , only tried enbrel before , your local trust should fund the drug if your entitled to the drug & because you where on other bio drugs , dont see how they can refuse

frogmorton

I can see you might feel overawed by such a rapid change, but you have been quite poorly so at least they are responding to your need :? .

I am almost more concerned for you that it sounds as though you will be back with the naff trust again??? Did l undestand that right?

Love

Toni xx

stickywicket

I'm not sure whether to be sorry or pleased about the steroids now, Tom :? I guess, if they do a good job, you'll feel it's worth it.

I've no idea how drugs allocation goes though I do know we're all very expensive :roll: and that definitely includes me with two THRs and three TKRs. It might be that, if you're being handed to a different trust, some meds will be ruled out until they actually decide it for themselves? (I'm just surmising.)

At least you got on OK with the meth so that's a good start.

As5567

trepolpen wrote:

what level Mtx you taking & how much folic acid ,

myself on 25mg Mtx + Sulpha & should start golimumab in next few months , only tried enbrel before , your local trust should fund the drug if your entitled to the drug & because you where on other bio drugs , dont see how they can refuse

Hi, thanks for your reply. I'm on 15mg meth and 1x 5mg folic acid 2 days after the meth. I myself dont know exactly why they refuse to fund golimumab for me as it works out cheaper than my current humira.

As5567

frogmorton wrote:

I can see you might feel overawed by such a rapid change, but you have been quite poorly so at least they are responding to your need :? .

I am almost more concerned for you that it sounds as though you will be back with the naff trust again??? Did l undestand that right?

Love

Toni xx

Hi, thanks for your reply. That is correct, my care is being transferred to the NHS trust that is within my area. They were more than useless when I was last there for my care, the list of problems I used to have is so big that it would take me all year to write them down. They have recently just opened a new hospital so let’s hope things have changed!

As5567

stickywicket wrote:

I'm not sure whether to be sorry or pleased about the steroids now, Tom :? I guess, if they do a good job, you'll feel it's worth it.

I've no idea how drugs allocation goes though I do know we're all very expensive :roll: and that definitely includes me with two THRs and three TKRs. It might be that, if you're being handed to a different trust, some meds will be ruled out until they actually decide it for themselves? (I'm just surmising.)

At least you got on OK with the meth so that's a good start.

Hi, thanks for your reply. The steroids should be worth it to break out of this cycle of pain/lack of sleep etc. I just hope that I don't gain too much weight, after managing to lose 3 stone in the last year it would be a shame to put it all back on.

I really don’t understand how they look at costs of medications on the NHS, it seems to be really strange. I remember when I first got Humira I was one of the only ones in the hospital to be given it as it was new and very expensive. My guess is that it’s the same with the medication I want.

As for the meth.....I wish I got onto a good start with it, I only managed to take the anti-sickness and then woke up in the morning without taking the meth. I think I was just so tired last night that as soon as I jumped into bed to watch some tv and take my tablets that I just dropped off and didn’t want to wake back up. Seems to have been worth it anyway feeling much more energetic today!

dreamdaisy

It's usual to have an anti-TNF supported by meth, I reckon that's the only reason my humira as 'lasted' as long as it has so far. I do weekly meth injections (15mg) and, as the liquid is more powerful than the tablet form that means I'm on a smaller dose than I otherwise would be - plus the tablets gave me a rash, the jabs don't.

It could well be that this 'double whammy' of meth and humira will do the trick - I hope so. Steroids are only ever a short-term fix and harmful to the rest of the body but there are occasions when they are a necessary evil. I loved my oral steroids - they would still be my drug of choice - but I'm off them now and intend to stay that way. We each wobble along our personal meds tightropes, yours seems to be particularly narrow at the moment. Good luck. DD

As5567

dreamdaisy wrote:

It's usual to have an anti-TNF supported by meth, I reckon that's the only reason my humira as 'lasted' as long as it has so far. I do weekly meth injections (15mg) and, as the liquid is more powerful than the tablet form that means I'm on a smaller dose than I otherwise would be - plus the tablets gave me a rash, the jabs don't.

It could well be that this 'double whammy' of meth and humira will do the trick - I hope so. Steroids are only ever a short-term fix and harmful to the rest of the body but there are occasions when they are a necessary evil. I loved my oral steroids - they would still be my drug of choice - but I'm off them now and intend to stay that way. We each wobble along our personal meds tightropes, yours seems to be particularly narrow at the moment. Good luck. DD

I will hopefully be on meth injections soon, don’t know why but I much rather inject than swallow pills. Makes it look like I'm taking less lol, due to take my meth tablets in 20 mins after I give time for my anti sickness to kick in. Hope it works out well and I wake up not feeling sick. I also found oral steroids to be great for the pain but bad for my body, I guess with steroids you simply can’t win lol. That is why I only accept them when I'm at my worst and try at all cost to avoid them.