Re-trying an 'old' medication? - feeling down :(

Vickio

Hi all. Fairly new here, but having a nasty flare up which is getting me down, so just wanted to pick your brains.

I have PsA (diagnosed 10 years ago). Over that time I have been on Sulfasalazine (about 7 years); (stopped working) then Methotrexate (18 months) which worked great in the beginning and then seemed to stop working and I had terrible nausea which got worse and worse; and since last year I have been on Leflunomide, and then when my bloods starting going wonky again they added Tacrolimus to that, which I gather from posting here before is quite an unusual one to be used but I was told b y the rheumy team that is is quite effectve as a tandem drug with Leflunomide. I was told to wait about 3 months to see if it helped.

I am now more than 2 months in and there has been no improvement at all, and in fact I am having a bad flare which to me feels worse than before the change of meds. I am taking my diclofenac SR every day to keep on top of it, but even that some days is not enough.

My arthritis is now more widespread than it's ever been, and I am suffering with my toes, ankles, knees, elbows, hands, neck and shoulders. My feet are especially bad and my left shoulder/upper arm is also very bad, especially first thing in the morning.

I had a steroid job in April which helped a lot, but last time I asked the RA team they said I couldn't have another as it was too soon after the last one (was 4 months after).

I'm ringing them again today to ask if I can have another jab or if they can change my meds. Would it be an idea to try MTX again, but maybe have it as a jab this time to help the nausea? Or do you thin k that because it stopped bein effective before it'd be the same now?

I'm utterly fed up now as I feel I have tried so many and my body just keeps fighting them

I'm finding working (part time in a shop) very difficult and even when I'm off, basic walking around and even typing this is hard.

Thanks all; sorry for such a long post but wanted to give you the whole picture.

Vicki

Vickio

PS: Forgot to add that I've just finished antibiotics for a bit of a urine infection which I know could be affecting the flare up; I actually started to feel slightly better yesterday but today it's as bad as ever (The arthritis, that is).

stickywicket

I'm sorry things are so bad for you and you're struggling to find the right combination of meds. However, you are doing exactly the right thing by ringing your rheumatology helpline. They are the ones who can help you.

There is a limit to how many steroid jabs we can have in a given period as they are not good for other bits of us although they do work wonders on the joints. My guess is that, by now, you'd probably be OK to have another but that would only be a short term solution.

The meds situation is best left to the experts. It might be that they will want to try biologics now rather than injected meth but, as I said, you're doing the best thing by contacting them and sorting it out. Please let us know how you get on.

dreamdaisy

Hello, I too have PsA and have tried many drugs over the years, the one constant being sulphasalazine. I started with tablet meth and got a rash, then tried leflunomide which gave me nasty headaches, then came cyclosporine which made me hairy. I was also on Celebrex (effective) but my then GP altered me to naproxen with omeprazole (not effective) and now I have diclofenac (effective which I keep to the minimum). I also had quite a few steroid jabs, depos in the buttocks and directly into my knees after aspiration: they never worked. I then tried the first of my anti TNFs, infliximab, followed by Enbrel and now I am on a triple therapy of humira, meth by injection, and good old sulph. The sulph controls my skin but does nothing for the arthritis. Truth be told nothing has done much for the arthritis probably because I went for five years without any medication thanks to a lax GP. :roll:

I know what you mean about feeling better with the antibiotics, I rather enjoy getting a bug that requires them because I stop my immune-suppressants (on the order of my hospital) and I do feel better in myself despite being 'properly' ill. I don't get much in the way of side-effects from the triple therapy but I guess they do pull me down in some way because I always feel better in myself if I have to stop them.

It strikes me that you are not really on enough medication to control the disease but I am only a practising arthritic, not a practising doctor. I think you should get in touch with your rheumatology unit and explain that things are currently untenable, I know they say that it can be between two to twelve weeks before a difference may be felt but surely the worse you become the greater the hill there is for the drugs to climb? Arthritis is a complicated business, the PsA has led to OA and the drugs for the former don't touch the latter. I have around forty affected joints and I empathise, life is difficult; I am reliant on my crutches and rollator and recently purchased a wheelchair which means I can go out and about more with my husband - and give him a cardio-vascular workout to boot!

I hope you soon begin to feel better in yourself, please let us know what your department has to say. I wish you well, DD

dreamdaisy

Bicarbonate of soda in lemonade is more effective - and palatable. DD

JamesFoote

When I was told I had colitis I looked into a prebiotic drink
The ones advertised on the tv, I then came across a drink called Kefir

You just add what looks like cauliflower to milk. The kefir feeds of the milk changing it into the best probiotic drink there is, many many times more good bacteria than any other bought drink and the kefir just keeps growing as you move it from one lot of milk to another

The cost is a few pounds for the kefir and milk. I don't like it as is so I make a smoothie

Look it up you will be amazed, I know it helped me

James

Vickio

Well, rheumatology haven't called me back and it's worse than ever.

stickywicket

All rheumatology helplines operate differently. Mine can take two or three days for none-urgent stuff, 'non-urgent' meaning no harm is likely to come to the patient and nothing to do with pain levels. I know other helplines only operate two or three days per week so obviously they'll take longer. My advice would be to hang on in there but I guess you could always ring them again.

Vickio

They are supposed to ring back within 24 hours; and usually do.

I'm gonna have to ring again but have to go to work today (no idea how I'm going to cope; am hoping the Voltarol will work miracles). I'm desperate for another steroid jab; really helped last time. My right knee is swelled up like a balloon, both my hands are very sore (prob shouldn't be using the laptop) and my ankles are burning up.

Really down today

stickywicket

Sorry, I was out all day yesterday so only just got this. How are things today?

I'm a bit worried that you mention voltarol when you're already taking diclofenac, the generic form of this. I do hope you've not bought some over-the-counter diclos as, if so, you'll be overdosing on them.