Ilumetri for psoriatic arthritis Fred's journey

[Bill]

Hi Fred,

If I went by the blurb for dimethyl fumarate (especially in countries where it is not approved) I would not have thought it worth trying. Jim, Caroline and I take the drug for PsA, a condition it is not supposed to help. I hit the ten year mark at the end of November. Not hassle free, but it seems to keep working without a loss of efficacy. I am at a loss to understand why it is not more widely available.

Always your choice and I wish you the best.

Cheers

[Fred]

Your keeping positive is always good, Fred.  You have figured out a good philosophy for living in general and for living with psoriasis and psoriatic arthritis in particular.

It doesn't always work FW and sometimes takes a lot of effort, but when you get results it drives me to be more positive.

Hi Fred,

If I went by the blurb for dimethyl fumarate (especially in countries where it is not approved) I would not have thought it worth trying. Jim, Caroline and I take the drug for PsA, a condition it is not supposed to help. I hit the ten year mark at the end of November. Not hassle free, but it seems to keep working without a loss of efficacy. I am at a loss to understand why it is not more widely available.

Always your choice and I wish you the best.

Cheers

I don't know why they choose not to prescribe it in France Bill apart from what they pointed me to, but as I said I wouldn't use it even if it was available.

[Fred]

Bye Bye Ilumetri. I had my dermatology appointment this morning and she wasn't happy. I've now got more psoriasis on the shins and scalp and it's now appearing on my hands too, also the psoriatic arthritis isn't getting any better and it's 4 weeks since the last shots so if it was going to work it would have done so by now.

We had a long chat (around an hour) and she asked me what I thought was the best move, so I said I didn't think Ilumetri was the right one for me after 1 year and the only one left in the pipeline was "Bimzelx" she agreed and offered me the chance of going on to it at the end of December.

She was also not happy that rheumatology had not been in touch with me about the ankle problem which is still bad and she got on the phone to them, it seems as expected they are not happy that I said no to Methotrexate before even talking to them. So she has tried again but this time said if I don't hear anything from them before starting Bimzelx I should go to another rheumatologist away from the hospital with her letter.

[D Foster]

Bye Bye Ilumetri. I had my dermatology appointment this morning and she wasn't happy. I've now got more psoriasis on the shins and scalp and it's now appearing on my hands too, also the psoriatic arthritis isn't getting any better and it's 4 weeks since the last shots so if it was going to work it would have done so by now.

We had a long chat (around an hour) and she asked me what I thought was the best move, so I said I didn't think Ilumetri was the right one for me after 1 year and the only one left in the pipeline was "Bimzelx" she agreed and offered me the chance of going on to it at the end of December.

She was also not happy that rheumatology had not been in touch with me about the ankle problem which is still bad and she got on the phone to them, it seems as expected they are not happy that I said no to Methotrexate before even talking to them. So she has tried again but this time said if I don't hear anything from them before starting Bimzelx I should go to another rheumatologist away from the hospital with her letter.

I can't remember, have you used methotrexate Fred, it did work for me in fact it was Naporex that I had the most trouble with it caused me to get a stomach ulcer. I agree methotrexate is not the best thing to take.

[Fred]

I can't remember, have you used methotrexate Fred, it did work for me in fact it was Naporex that I had the most trouble with it caused me to get a stomach ulcer. I agree methotrexate is not the best thing to take.

Yes I tried both pills and injections, never again.

[D Foster]

I can't remember, have you used methotrexate Fred, it did work for me in fact it was Naporex that I had the most trouble with it caused me to get a stomach ulcer. I agree methotrexate is not the best thing to take.

Yes I tried both pills and injections, never again. 

Yes I agree it's crap but at the time I couldn't find an alternative that gave me some sort of results so it was no choice use that or virtually do nothing because I couldn't do much at all.

[Fred]

I can't remember, have you used methotrexate Fred, it did work for me in fact it was Naporex that I had the most trouble with it caused me to get a stomach ulcer. I agree methotrexate is not the best thing to take.

Yes I tried both pills and injections, never again. 

Yes I agree it's crap but at the time I couldn't find an alternative that gave me some sort of results so it was no choice use that or virtually do nothing because I couldn't do much at all.

So much out there today Dave, I'm surprised they still keep prescribing cheap poison that will fail or put people off trying anything else.

[mataribot]

So rheumatology isn't happy that refused to take poison? Let's just cut the crap - There is no long-term studies showing that MTX prevent disease progression in PSA. In fact, most studies do not get past a small study, because there isn't any evidence that helps at all. I guess it could be taken for psoriasis, but there is little to gain from that.

[Fred]

So rheumatology isn't happy that refused to take poison? Let's just cut the crap - There is no long-term studies showing that MTX prevent disease progression in PSA. In fact, most studies do not get past a small study, because there isn't any evidence that helps at all. I guess it could be taken for psoriasis, but there is little to gain from that.

Yes they don't like me Mata  All I need from them is a shot of something in my ankle, but because I won't listen to any of their talk about helping with psoriatic arthritis and the fact that they can't prescribe me stuff that works I may have to go outside the hospital.

But then again I'm thinking they will probably be the same, so if all else fails it will be chainsaw time.

[mataribot]

My guess it would be cheaper over the long haul to do the injection - you'll would probably get at least 8 weeks out of it. And to be honest, I don't get injections from my RA. I get them from OA, because of the same problem. RA will not listen.