Finally!!

[Krissie_Wright]

Hi Guys,

Just thought I'd pop a quick post this morning. I saw my rheumatologist yesterday morning and after some initial visual checks he did some ultrasound scans of my painful joints... Both the consultant and the student Dr who were meeting with me were horrified at the amount of inflammation and fluid around my joints and tendons in my wrists.

So, I am finally (after 20 years of joint pain) a confirmed case of Psoriatic Arthritis!! You have no idea how much relief I felt on getting the diagnosis, I cried with joy because I have proof that the pain etc. wasn't all in my head for all these years.

He's prescribed me Methotrexate (MTX) so had to go for chest x-rays after my appointment, I am assuming to confirm that I have no TB lesions in my chest, and I should be starting the tablets in the next couple of weeks once my GP gets a letter from my consultant.

I know some of you guys are on MTX for the same condition and I wondered if you could tell me how effective you find it to be, how long it took to kick in and be effective and if the side effects wear off over time (if you experienced any)...

I had some steroid injections into my worst joints yesterday and woke up this morning completely pain free (well, except where the Dr hit a vein giving me the injection) for the first time since early August last year. I feel wonderful, I could make a cup of tea this morning without having to use 2 hands to lift the kettle.

Now I just have to do some research to see if I can continue with my career in medical microbiology given my new "immunocompromised" status. Would be gutted to have to give it up, am jobseeking atm after being made redundant earlier this month and have a number of applications in for med micro roles...

Thanks for all your help in advance.

Krissie

[Fred]

Hello Krissie, I know what you mean about getting conformation about psoriatic arthritis. It does help to know for certain that it's not just in your mind that your bones are locking up.

Re Methotrexate, I'm not a good one to ask as I'm against it. I do hope some of the other members will see this and log on to give you some positives about it as I know some have had very good experience with it. In fact I have noticed that some of the members that don't pop by the forum tend to be the ones who are using MTX, So it must be doing them good.
Bad Angel and Micky are fine examples of it working well, but we don't see much of them these days. Bad Angel didn't move over to the new forum as she was doing so well with MTX she just didn't want to be on the forum getting constant reminders about Psoriasis. Catch 22 really if you do find something that works you no longer need a psoriasis forum.

For the moment I did make a thread about MTX which may help: Methotrexate

Please keep us informed on how it goes.

On a side note: If you get a moment could you tell me more about JAK in this thread: RE: JAK (Janus Kinase) Inhibitors as I may be going on a trial Anti Jak

Regards.

Fred.  

[Caroline]

Fred,

There was already made some less positive comment on MTX in this thread
MTX

Caroline

[Krissie_Wright]

Until recently I had been very against using any immunomodulatory drug, be it methotrexate or one of the biologicals, as I know the processes that are disrupted in the immune system through their use but after suffereing horrendously since last august with the deterioration of the dexterity in my hands and wrists I feel it is time to bite the bullet.

Standard pain and inflammation medications are not working on my joints and I cannot live my life on tramadol as it sends me totally Kooky and has other side effects. Besides that at the rate of deterioration in my hands & wrists I would be completely unable to do anything productive in a few months time. So, time to give Methotrexate a go.

I understand your thoughts about it Fred, but at the dosages prescribed for psoriasis there is actually minimal effect on the cells of the body unlike the dosages prescribed for cancer. The side effects can be unpleasant but not everyone encounters them. Compared to the biological drugs and new trial drugs there is a whole lot more data out there that shows it's efficacy and, having been used for the treatment of psoriasis and psoriatic arthritis for a long time there is data on the long term health effects (unlike other drugs which have only been in use for a max of 10 years).

I cannot understand why people would leave a psoriasis forum when their skin clears up... Surely they would be great points of contact to show newly diagnosed patients that you can live a whole and full life with the condition and that there are medications out there that work??

Krissie

[Fred]

I understand your thoughts about it Fred, but at the dosages prescribed for psoriasis there is actually minimal effect on the cells of the body unlike the dosages prescribed for cancer. The side effects can be unpleasant but not everyone encounters them. Compared to the biological drugs and new trial drugs there is a whole lot more data out there that shows it's efficacy and, having been used for the treatment of psoriasis and psoriatic arthritis for a long time there is data on the long term health effects (unlike other drugs which have only been in use for a max of 10 years).

Good point, It's just that I have it in my head never to touch it again. so that doesn't make me a fair judge of it's use.

I cannot understand why people would leave a psoriasis forum when their skin clears up... Surely they would be great points of contact to show newly diagnosed patients that you can live a whole and full life with the condition and that there are medications out there that work??

Krissie

Yes it's a shame some don't come back to share their success, but in some ways I can understand it. A few have told me they just don't like being around a forum that reminds them constantly about psoriasis. It used to bother me that people don't come back but I'm used to it now, and I just look at it that if the forum has helped them then I'm happy.

Me I love Psoriasis so I'm always here.

[Krissie_Wright]

Well,

I promise that when my skin clears I won't disappear... There is too much information/support and inspiration to be gained from people who have been through everything until they find something that works staying around support forums like this. How is anyone supposed to feel hope if those who find a successful treatment are not around to talk about it?

I'm still working on my blog... hoping that it will provide some inspiration to others and maybe even educate people too.

[Caroline]

Well girls and guys.
In my case, I have my psoriasis problem under control.
I did not leave the forum, I even joined it to tell.

But... Nobody seems to care

So my final action will be to gradually fill the thread on dimethylfumarates, and after that you are on your own.

[Fred]

Well,

I promise that when my skin clears I won't disappear...

That's good to hear

But... Nobody seems to care

I Care and appreciate your input.

The forum needs more people like you two. I try to give as much information and news as possible about Psoriasis, but I'm no expert I'm just a person living with psoriasis and my own opinion is just that. it's one persons opinion.

So you hang around and keep sharing, hopefully others will feel like joining in too.

[susan]

Hi I was on methetrexate for years. Started with the tablets once a week but kept feeling nausea for 6 days so had weekly injection of it instead and that was better. It helped the pain and also helped slow down the psoriasis but after a long time my system got immune to it. Maybe I was on it for too long but everyone is different. Susan x

[Krissie_Wright]

Hi Susan,

Methotrexate is one of those meds that works for some and not others.. Your body can become tolerant to pretty much all medications, I have experienced that over the years as my skin has come to tolerate Dovonex meaning I have to stop using it and let my skin worsen for about 6 months before going back to it. The Drs. usually up the dosage when tolerance is observed.

Sadly, I'm still not on the MTX yet, still waiting on my GP to be contacted by my Rheumy....

Can I ask, you said you had nausea after taking the MTX, were you on folic acid supplements on the days you were not taking it? I have heard that this can work to reduce that kind of side effect. I have started to take it already to prepare my body for when I start the MTX, but I'm only taking 400ng a day while my GP seems to think that I'll need 5mg a week when I am taking the MTX (which if taken as a daily dose would be waaayyyy more than the RDA).

I'm hoping for some level of improvement in both my skin and joints.. been too long now that I have been struggling and it's had major effects on my work.

Krissie