Is your dog's unusual barking a secret code for something mysterious?

[Margalot]

Hi All,

 

My last visit to the rheumatology dept - yesterday, the doctor now seems to think that I have psoratic arthritits, which at least is something I can work with now as before they werent too sure. I only have one small patch of psoriasis on the nape of my neck just in my hairline, but it was all the joint pains etc that seems to point in that direction. I have been on 4 sulphasalziane tablets a day since the end of June and although things have stabilised it is still there with occasional flare ups. On my visit yesterday the doctor who is absolutely lovely, she wanted to start adding in Methotrexate, tablets to start with 15mg a week all in one dose of six tablets. I am fine with this but am terrified of the possible side effects I am a googler, and sometimes you wish it wasnt so readily accessable all that information

 

The thing is I really cannot afford any down time and I am worried it will make me feel sick or fatigued. I am in a quandry on what day to start the tablets. I really dont want to feel ill all weekend if I take it then, but also am worried it will make me feel bad at work if I take it in the week. (I do work with my OH so time away isnt a huge problem) Also I have been told to take folic acid on another day, not the same day as the Meth and that has been prescribed to me as well, but does anyone know any more about this drug? and should I start the folic acid first?? (by the way I did ask the doctor lots of questions but its only when you have left that all this pops into your head)

 

i have now been brave enough to read up on bits and pieces about PA and its funny how most of the symptoms fit now! i really thought they were barking up the wrong tree as it has also been my tendons in my heels and an elbow tendon that are sore as well as the joints, so spent the first 5 months of pain thinking I had flat feet!!

 

thank you

[Snowy]

I know there are some forummers who are on this drug and get along very well with it. Hopefully they will be along to reassure you themselves! I do know a few on it though, and they generally have no problems with it. It is worth a try, and it can have a significant effect on your symptoms.

I am in a similar situation - have just started some blood pressure tabs and am paranoid about the listed side effects! So far there has been no problem though

[bluekarin]

My YD takes this in injection form. She used to take the 6 tablets on a Friday night, but she did find she felt really quite unwell for the Saturday and sometimes into the Sunday. I don't know if this is because it is a strong drug and she is only 10, or if this is what it does to everyone. She does find the injection has fewer side effects which is why she went onto it that way. The folic acid you take the night before you take the tablets. We sometimes forgot so she sometimes took it in the morning. I think as long as you take it before hand, you will be fine. Its just to help your liver recover. You will find you'll need blood tests - YD had them monthly but is now having them every three months.

 

I know what you mean about the web. When I first heard that she was going on Methotrexate, I nearly had a heart attack as all I read was about it usually being prescribed for cancer treatment and was convinced the doctors weren't telling me everything. But then my brain stopped working in overdrive. Hope this is of some help to you

[Omletina Kyckling]

Hi,

I have psoriatic arthritis and have been on methotrexate for the past 4 years.

I was terrified even before I went on it as I'd researched various meds when I'd had psoriasis flare ups in the past and the side effects really scared me.

They started me on a low dose and built it up over time. I have side effects, I get very tired and I get nausea, but when you look at the long list of possible side effects, it's nothing really and the advantages far outweigh the side effects in my book. I was hardly able to dress myself before the mtx kicked in whereas I can now lead a reasonably normal life.

I have blood tests monthly to monitor my liver count, red cell count etc and whenever there has been a blip, my GP has 'phoned me immediately to tell me and ask me to have another (if I've overdone the vino my liver can flare up).

About a year ago, I was getting increasing pain again so my consultant decided to slightly alter my meds, so am now down to 15mg of methotrexate a week, and take 10mg of leflunomide each day (leflunomide is a similar drug, a dmard so same side effects)

Make sure you take folic acid on the 6 days a week when you aren't taking the mtx as this can help both with the nausea and to keep your red cell count good.

You have to remember that methotrexate is used as a cancer/leukaemia drug and given in much higher doses, and it's at these doses that the worst side effects happen.

As bluekarin has said, a lot of people find that having it by injection gets rid of a lot of the side effects. They offered this to me, but I didn't want to be injecting on top of everything else which was going on in my life, so decided to persevere with the drug change to mtx + leflunamide

If you want any further advice or just a shoulder to cry on, pm me.

[laurmurf]

I was in your position not long ago, Omletina was a great source of information and comfort for me too!

 

I will hold my hands up to say that I've found methotrexate really hard going.... so hard going that altho i started out really well, after 8 months or so I gave myself the odd week 'off' which turned into a few weeks off and, well you can guess, can't you? I've been 'non compliant' for a few months now and the flare ups have come back with a vengeance!

 

The problem with the methotrexate was that it did make me feel wiped out, nauseous, and had a regular big impact on my life: but it also stopped the flare ups. It stopped them so well that I forgot how much pain a major flare up can give me and all i could think about was the methotrexate impact. My flare ups have been awful lately and i feel like poo.

 

I'm now determined to start taking them again, but i've got metachlopromide (an anti nausea drug) to take too. I am determined not to let my arthritis control my life or my future. My knuckles are already getting huge as are my toe joints, and my shoulders are often so bad I can't drive and there is NO going back when joints are damaged (I think I might be telling myself this as much as you!).

 

I was given more folic acid to take, initially one table the day after the methotrexate, then over 6 days after it. The way the mtx works blocks the production of folic acid so you need to give yourself a dose.

 

I'm also going to look into the injections because if it would control the side effects then that would be a better option for me than ditching it altogether. (I've even been avoiding the blood tests because they'll prove to my rheumatologist that i've not been taking my meds and I know i'll be told off - I feel like a naughty school child pathetic, I know!).

[Omletina Kyckling]

Ooh Laurie, I'm going to have to give you a big telling off!! No wonder you've not been around recently, you knew I'd give you a smack!

I, like Laurie, tried to reduce my meds (without consulting my consultant) but didn't do cold turkey which is asking for flare ups but reduced them slowly over many weeks and found my arthritis came back with a vengeance, so even though the nausea and tiredness are bad, I decided it was better than the actual arthritis and I'm lucky that they started treatment early enough that I shouldn't have joint damage for a while.

I was also prescribed anti nausea tablets by the doctor (the same type they give to cancer patients having chemo) so if the nausea was particularly bad I could take them and they really helped.

Your dose seems a bit high to start with. Think they started me on 7.5, then 12.5 then 15, eventually building up to 25, but as I couldn't cope with the side effects and the pain was still bad, they reduced back to 15 but added in leflunomide.

My psoriasis is a lot more in control too for the first time in 20 years, so that's a bonus!

Just see how you get on and if you have any worries, go to your doc or come on here. There is a fabulous forum for PA sufferers which you could also go on for advicej, there are sections for psoriasis, alternative remedies, but one specifically for PA also

http://psoriasis-help.org.uk/The_UK_Psoriasis_Help_Forum.html

[Margalot]

Thank you all for your replies, it is so reassuring to hear how other people have managed. Bluekarin my heart goes out to your daughter, she must be so brave especially with the injections. Puts my worries and grumblings in to perspective. I am a complete baby. The thing is that since being referred to the rheumatology dept and going onto the treatments, I have been left to find out about it all myself, and some of the things you read can be so contradictory with each other!

 

My initial problem was believing that they were on to the right diagnosis and I didnt want to be taking drugs uneccessarily. I believe that they try and hit the problem hard as early as they can to minimise joint damage. Although I still believe I am a mild case and maybe the doseage is too high for me! (I suppose i will find out soon)

 

Laurmurf I have pm'd you before, when I was very first referred and thank you for your kind reply then, at least i have now been diagnosed with a type of Arthur so can read up on that specific problem. And thank you also Omletina for your personal reply, It was lovely to receive that and made me feel much better.

 

i will take a look at the other forum. I did take a look at the arthritis org forum but reading through the posts left me feeling a bit down and scared, My outlook seemed very bleak so to keep my chin up I have just been dealing with it on a daily basis and not resenting what my future might hold! I was very angry at first as I felt that all the things i had planned for my older years had suddenly been taken away! Because my ankles are affected I was resenting the fact that I cannot wear any type of heeled shoe or boot at the moment, (seems silly ) but I seemed to concentrate on the things I cannot do instead of what I can! any way enough waffling from me. Today is a good day and I just wanted to thank you all so much for your kind replies. I am sure i will be speaking with you all again soon

 

((hugs)) to all x

[Tiggy]

((HUGS))s I see a lot people on meth and you do need regular blood test but in the long run its so much better than being in pain, good luck I hope everything settles down for you

[Omletina Kyckling]

I went through an angry stage, and a "why me?" stage, I was only 38 when diagnosed and wondered what the future might bring. I went through it all again earlier this year when soon to be ex husband decided he wanted a divorce as I was terrified of a future alone, with "Ooops, word censored!"ody to "look after me" (not that he ever did!). I also get frustrated at what I can't do, especially as I'm a keen gardener. But I now try to think about what I can do and do my best to concentrate on the positive.

Please try not to worry, everybody has a different experience of any drug, so you may be fine. Just take each day as it comes.

I know what you mean about the shoes, as my arthritis is in my feet and knees as well as hands, shoulders and back, I can only wear "sensible" shoes these days and was so sad to throw out (or give away) all of my lovely heeled boots and shoes!!

Keep me posted how you get on with it all

(I've been to doctor this morning, she asked me to go see her as my liver count was up a bit again this month. I keep getting blips with my bloods, we can't really work out why. I do drink, even though I'm on mtx, but don't go crazy with it, I just like my wine, nothing was different this month but the liver count was much higher so I'm now going to keep a diary of any fatty foods or alcohol I have so we can try to see what is causing the blips!!)

[Angie]

I'm not at the MTX stage yet, rheumy is talking about it...i will give sulphazalazine a bash ....got to go down all other paths first.I do have to have cortico injec into feet, and see OT for splints for hands.

Friends on MTX have all tried the tablets and are now on injection and have fewer problems.They take the folic acid and anti-emetics to ease through the two days following medication night. But they tell me they wouldn't be without it as they are practically symptom and pain free.

Inflammatory arthritis in any form is just not nice...Nor are the drugs that go with it.

My heart goes out to the children that suffer with this debilitating disease. I Hate it so i guess a child desperate to be active must hate it even more.

I'm so glad that we can discuss any topic within reason on the forum...always a friend out there when in need.