Hey from CC66

[CC66]

Welcome to the club Chris. not been to your neck of the woods for a very long time.
This is a great place to be and Fred has done us proud with the help of Jim we have s superb P/PsA forum that has more information on it than any other place that I have found.
Sorry to hear that you have PsA , I used Naproxen and it gave me stomach ulcers so the side effects from that was not good, I was on MTX for over nine years, six on oral and just over three years on the injections. It worked very well but the side effects built up to the point where I had to change to injections but then it built up again and I had to stop altogether. Most of my really bad side effects were stomach problems and I often wondered if the previous problems that I had with the Naproxen did not help at all and were a contributory factor.
I works very well for the PsA and it did work up to around 80% for the P , I am on Stelara at the moment which is great for the P but not very good for the PsA and in fact my dermatologist is hopefully changing me over to another bio in fact the same one as Fred which seems to be better for P and PsA.
I have been fine on Stelara but in the last week I have read a survey showing  an increase in cancer of people using Stelara so after 5 years ish on it I think that the time has come to change, the survey may or may not be good that they have done but !!!!.
I know that MTX has got a bad name on here with some people but I think that people are prejudice against it just by hearsay as one thing I have learnt is that what works for one does not necessarily give the same results for someone else and that goes for side effects.
All the best have a good look around and don't mind the inmates as most of them are barmy.

Cheers 'D'  

Life is quite hectic, so won't be here as much as i'd like, but will still drop by often.. I have been very lucky with any meds, no side effects at all. i was on Diclofenac for many years before the Naproxen and no issues at all, so hopefully the Rheumy will switch me to the MTX as sulfasalazine is not working at all. 
I do appreciate everyone's advice and concerns with MTX but as mentioned, i'd likely need to fail on it before trying anything else. fingers crossed i'm one of the lucky ones eh? 

my previous Rheumy almost put me on to MTX 2 years ago, but switched at the last minute to Sulfasalazine and the new Rheumy almost switched me in July last year, but then decided to double the dose on the Sulfasalazine instead.. and now, my thumb has gone from perfectly fine, to distorted to the point of being unusable... maybe if i had gone on to MTX initially, it would be ok now instead of a useless digit that won't move

Roll on the 24th when i can hopefully make progress instead of going round in circles

[Kat]

Welcome Chris!

I've never been on Methotrexate and there are mixed feelings on it here. But that's what makes this forum great is that you can hear why people like or dislike certain treatments. It makes it very informative.

Best of luck and hope you get sorted out soon!

[mataribot]

MTX does absolutely nothing for the back. There are some small studies that suggest that sulfa may help, but my guess it wouldn't in a large scale study. MTX on the another hand, will help Psoriasis and RA. My guess is they are just following protocol.

[Caroline]

You're lucky you are male, if you are female and still want to have children you should certainly not use MTX, is has been used for early abortions.

[Fred]

You're lucky you are male, if you are female and still want to have children you should certainly not use MTX, is has been used for early abortions.

Males shouldn't use Methotrexate if they want children too. They should stop at least six months before trying for a child as they could pass it on in their sperm. Too Risky.

[D Foster]

You're lucky you are male, if you are female and still want to have children you should certainly not use MTX, is has been used for early abortions.

There are many many drugs that cause similar problems including Ibuprofen , there is to much prejudice against MTX when many drugs are just as bad , all drugs are not natural and have side effects and drugs in general are used for many different purposes in different doses.

[CC66]

Hey Folks.
Sorry i've not been on in a while but thought 'd update with progress....

I turned up for my appointment on the 24th April to be told that it had been moved to the 28th. i was a little more than miffed ... i showed them the text they sent me the day before reminding me of the appointment and it telling me of how much the NHS waste in people not keeping appointments.. i politely told them that i had had to take a day off work, drive for 40 mins and pay £2.40 parking... they had no reply to offer other than an unconvincing apology.
well, i couldn't take another day off at short notice, so politely told them to cancel.
I went home and wrote a strong letter of complaint (having waited 8 months for a 3 month appointment) and low and behold, i got an appointment for yesterday with the head specialist rather than a locum.

so, on to the positives. 
this guy was good, he really listened and paid attention to where it hurt and how much. he agreed the Sulfasalazine wasn't working and has suggested leflunomide. he told me that recent research shows that methotrexate is less effective than they thought for PsA, the theory was that it is effective for psoriasis, so would work for PsA but studies show that it's not as good as hoped.
He has also booked me in for a shot into my thumb which is now completely useless. 

overall, moving forward and hopeful 

[jiml]

Hi Chris.... I'm glad you gave them a rocket for messing you about with the appointment....the follow up letter was a great idea, and certainly had the desired effect.

It got you to see the top man for a change and gleaned some useful information from him, and got moved to leflunomide which will hopefully give you relief from the pain,

Glad you are moving forward and ticking their boxes .....I hope the shot in your thumb will also give you some relief good luck for the future and thanks for the update .....I look forward to hearing how leflunonide works for you
Jim

[Caroline]

I did not know yet of leflunomide. I see it is inhibiting the reproduction of rapidly dividing cells.

Just like Jim I am really curious if this will work for you. And if you will have any side effects with it.
Anyway of course I hope it will serve its purpose.

Finally they are starting to realize that MTX is not the direction to go.

Good Luck, hope to read from your results.

[Fred]

Yes you should always fight your corner as far as the NHS are concerned. It's a shame that some have to, but it's the way it is.

About time they stopped dishing out Methotrexate, I hope your new treatment helps but I don't know much about it so it will be interesting to see your results.

Good luck.

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