Fed up - now on no treatment

Paleogirl · 25. Nov 2016, 15:01

So diagnosed in September with what they described to me as aggressive RA. Put immediately on triple therapy. Delayed with the methotrexate because had to wait a month for the chest X-ray in which time I was taken off the hydroxychloroquinine because of a bad reaction. Two weeks (a whole 2 tablets) of sulfasalazine then taken off it due to adverse reaction.

Started on methotrexate at 10mg to build up to dose of 20mg. Lasted three weeks before being carted off to hospital with severe reaction.

Have been on nothing for over a month whilst they organise methotrexate injections. Injections are delivered by a private company but they've been busy so the paperwork hasn't been done. They only deliver in my area on a Monday therefore it will be another two weeks at least before I get any. Once I have it in my hands I'm to try and ring my ever engaged Hospital RA helpline to arrange to be shown how to inject. These on happen on Friday afternoons and I will have to wait for the next slot.

Meanwhile the disease rages on.

I have a follow up consultant appointment in December. So how are you feeling now...errrrr

Sorry for the long moan. When I was diagnosed I was told once the drugs kicked in I would feel so much better and would be jumping around by Xmas.

Reality...the RA us making me ill, the drugs left me with permanent health issues on top and now well I haven't really moved off start. I'm no further on than I was when I was first seen.

Is this how it is?

stickywicket · 26. Nov 2016, 08:37

Paleogirl wrote:

Is this how it is?

Well...yes and no.

To take it, bit by bit:

Everyone has to have a chest x-ray before going on to meth and there is usually no fast track.

You were very unlucky in being unable to tolerate any of the starter meds.

It's normal to have a gap of a month (sometimes longer) between meds that produce a reaction / don't work in order to give them time to get right out of the system.

If the 'private company' is 'Healthcare at Home' there are numerous threads on here about them. Admittedly, they seem to have got their act together a bit more now but people have been left without meds. It's not unusual.

It's only common sense that your hospital will make no arrangement re showing you how to inject until you get your delivery.

Unfortunately, arthritis has always involved a lot of waiting. We wait for consultants, for physios, for x-rays, for scans, for orthotists and many other things. This was always so but, with the NHS now pared down to the barest of essentials, the waits are longer. It is very frustrating and worrying but our only choice is private medicine and that would be beyond most of us.

I hope things happen asap for you but, in the interim, try not to worry. That only makes everything worse.

(What are the 'permanent health issues' which the meds left you with? That's a bit unusual.)

barbara12 · 26. Nov 2016, 10:29

sorry I dont have any advice but just to send you some hugs (()) and hope that in December they off you some help..I can only imagine how you must feel..

littlepetal · 27. Nov 2016, 07:07

You will get a delivery date for your injections so it might be an idea to ring your consultants secretary when you know when they are coming to see if something could be arranged. If that's not possible could a nurse at your doctors surgery do it for you? xx

dreamdaisy · 27. Nov 2016, 07:27

'Hurry up and wait' is a motto for the grunts in the American army and applies equally to us. This is all par for the course although it sounds as though you have been very unlucky to have suffered so badly after relatively small doses of the meds you have tried. The NHS can move extremely fast when necessary but, thanks to the improved knowledge and awareness of GPs, many more people are being referred more quickly and (in the case of my department) the system is creaking under the strain. Rheumatology is one department where they never say goodbye to their patients, we're with them for life. I suppose going privately would expedite matters but at a huge cost.

Self-injecting is no big deal, I was shown what to do when I started Enbrel with the nurse injecting an orange with saline water but I told her we could cut to the chase and I did myself there and then. The benefit of injected meth is that the digestive process is bypassed but even so the meds can take up to three months to begin to take effect. I remember my consultant telling me when I began humira back in 2007 that I would soon be able to ditch the crutches and the pain relief. I have no doubt she meant well in trying to give me hope (this was new med no. 8) but luckily by then I had learned not to believe docs and their theory-based promises; there are those, whoever, who do very well on meth (and maybe one or two other things) so I hope you join their number rather than mine. DD

frogmorton · 28. Nov 2016, 15:00

I can see how you must be feeling Paleogirl

I think it can be like this a bit. Nothing seems to be going easily for you though.

I had a chest Xray straight away there and then at my first rheumatology apt and my depot steroid injection didn't cause the effects that yours did, if I remember rightly.

You have had real bad luck with your responses to the medications you have tried. Not everyone is this unlucky.

I can't see your rheumatologist being too happy if you still don't have your injectable MTX by the time you see him/her.

I am so sorry it isn't coming together for you quickly and am sending you more ((())) as it's all I can do.

Love

Toni xxx

dreamdaisy · 30. Nov 2016, 06:29

Hello, we're a few days on now, how are you feeling? DD

frogmorton · 30. Nov 2016, 08:25

I was wondering too...

I hope maybe some things have started to slot into place for you. It does seem unfair.

Sending you extra ((())

Love

Toni xxx

dreamdaisy · 10. Dec 2016, 13:26

Hello again, do you have any news? I presume not as you haven't posted but hope things are beginning to fall into place for you re. delivery, being taught how to inject etc. DD

Fed up - now on no treatment

Comments

Categories