Today was the third week of mtx for me. It has been a bad day for me. I have had it so easy the last two times so today was a major surprise for me. I took the pills this morning and with in two hours I was sick. The past two times I have just got tired and a little out of it but this time I was actualy sick. To add more to my day both knees and hips are in a major flare. When my hips hurt it makes everything so much harder. Sitting and standing hurts. Walking becomes almost impossible. So I have two kids running around who want and need my attention, a house that needs cleaned, laundry that needs washed, and food that needed prepared. I have a man who tries to help but today he had his work and his own things to do. I hate to complain to him about how bad I am hurting or how bad I feel. So today I have been feeling so alone and over whelmed. The kids had to eat frozen chicken nuggets and french fries for dinner. It was something easy for me to make for them. But I felt bad that they had to settle for that for dinner. The house still needs to be clean and the laundry still needs to be done but it will have to wait till tomorrow after work. Oh and to top it all off I got the drs bill in the mail yesterday. Xrays are crazy expensive and I hate having bills like those. So there is my complaint for the week
Ok I lied. I am just so mad right now. I know have two fingers that I can not bend. Also there is the headache I developed last night that has not gone away. I am just so mad at my body right now I have lost of cooking to do tomorrow and I need my whole body to work for once. I can not remember the last time I did not have pain some where. And I seem to just get madder as the days go by.
I really feel for you, as no doubt I will for all on these pages. My youngest kids were 5 and 6 when my PsA started, I understand how you feel - it's exhausting and so hard to stay on top of it all for them as well as for yourself. Just getting my kids to school was agonizing, the walk back was excruciating then I had to go to work. Don't actually know how I did it then. The overwhelm, the worry and thoughts of the future scared the hell out of me.
I want to apologise now for the posts I've made up to now regarding methotrexate, it does appear to ease the pain for some people, it made me worse. I didn't think when I posted that someone may have just gone on to it and was hoping for the best. I have more to say about it yet but these are my personal experiences and yours may be different.
What I would like to encourage you to do is take a really good look at your diet. Not sure what your doctors are like but ours here in the UK are worse than useless sometimes (Most times in my opinion). They maybe "Do their best" but to be honest it really isn't good enough - all we have here is symptom control not disease control - there is no preventative medical care here. So you would never catch our doctors saying anything like "Make sure you get anti-oxidants, make sure you avoid starchy food, make sure you eat and/or supplement with anti-inflammatory foods/pills".
Check out inflammatory info on the net. For instance the meat we eat today is so full of omega 6 that our bodies are massively out of balance - there should be a ratio of 1:1 or at most 2:1 of omega 6 (inflammatory) to omega 3 (anti-inflammatory). From what I've read the balance in general is now ridiculously far out (e.g. 200:1) because of all the processed stuff we eat. The animals we eat are processed before slaughter in that they're full of anti-biotics and growth hormones and the stuff they're fed on changes their body chemistry. I only eat meat from natural farms where they don't use chemicals (this in the last few months). I also take a lot of omega 3 now (as well as many other things). I cut out all processed rubbish, all vegetable oils, starchy food, sugars and a lot of other carbs. I only now eat stuff that man has not messed with (as far as that's possible). Properly reared meat and vegetables (non-starchy). My CRP test result went down in three monthly test from 2.2 to 1.4 (previous to that it had been climbing from 1.8, 2.1, 2.2 in the first three quarters - while I was on 25mg of methotrexate). I'm not entirely sure what those values mean but I know lower is better than higher. More interesting, my platelets, which were at 480 in May this year went down to 374 in August (the "normal" here is between 150-400), bearing in mind that I threw the drug away on July 8th, and that was another thing that had been climbing while on MTX (Jan = 455, Mar = 464 and May = 480). The rheumatologist was baffled by this one too. Again I've no idea what these really mean but lower is better (unless it goes too low of course). I'm just showing you that diet makes for big changes in body chemistry and I will not accept that this inflammatory response can not be calmed. You shouldn't either. I've had very little pain in the last 5 months (though I'm not getting complacent because I know it could just be waiting for that day when I could really do without it). (Lol, yeah that would be any day at all). As a bonus I lost a lot of weight too which helps when you have a dodgy ankle.
I hope I haven't upset you with my methotrexate rants, we're all different, but I do hope you'll try changing your diet because it's made the world of difference to me. You can do while you're on the MTX and if you feel better you can alter your dosage. I would never recommend doing what I did and just coming straight off everything all at once - that was just a decision I took (because I was really p'd off at the time and sick of the pain and fatigue).
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Paula you should never feel bad about about complaining about your experience on MTX. Everyone has different reactions to different meds. I have two sisters and both of them have UC. (My parents are so upset, three kids and they all have some kind of auto-immune.) My older sister can get by with her pills and supplements while my younger sister has to go in every six weeks for remicade and still take pills the other weeks. If she misses any of her meds she has a major flare up. So while I am hoping for the best with the MTX I know that there are people who it has not worked for. But right now I am nott feeling that much better and to be honest it has me very angry. I am frustrated because I am just having so much trouble keeping up with everything and it has just been going on too long for me.
My Dr did suggest for me to change my diet. She said I need to go organic. When we were discussing my family history (my dad also has psoriasis and I have an aunt with crohns) she said that I should discuss with my family the benefits of going organic. So I am in the process of trying to change mine and my kids diet. I know that I do not have the most healthy diet so we are changing that. It's just hard to convenience my house hold that they want to change what they eat.
Thanks autumnmat, I felt a bit bad about that one but people should know that MTX doesn't protect you with PsA - though there will no doubt be trials done that prove otherwise, I think a lot of these trial results depend on who benefits financially on the outcome. The damage to my joint shows that MTX hasn't done a thing to stop the deterioration of the joint :(.
Diet really does make a difference. I'm having problems here though because my kids don't want to eat the stuff I need to eat. My husband is OK - he's already shed a good few pounds eating organic meat and veg but he cant give up the mashed potato. I feel bad trying to force a healthier diet on them all - which is silly really because it can only do them good (but those pizza's and other processed rubbish are tasty and my kids still cant see the problems with that). I'm just going day by day at the moment. Last night for instance the kids groaned when they saw me get the stew steak out of the freezer - meat and vegetables AGAIN! They just didn't want that and it's not something you can cook for one - so they got what they wanted and I didn't eat. I'm trying to think of something I can do that's right for me that isn't too time consuming to cook while the rest of the family get their pies and pasties and chips and other stuff that's not working for me. I suppose it's just a matter of re-organising everything (but I'm not the most organised person and that's difficult for me).
I've worried now and then about whether one of my kids will get this, my eldest daughter complained of pains in her ankle and I worried about that but it seems she just twisted it. I've got four kids and I'm watching them and wondering - but there are no auto immune problems in my family going back as far as I see. So where did this come from? All those foods that man has messed with to extend shelf life and increase profits - all unbalancing and upsetting our bodies natural systems can be the only culprits really. And all those vaccinations that we all had, and held our kids down for! What have they done? (thinking here of the content of the vaccines - the mercury and God knows what else). I could rant about this all day .. I rant a lot.
I'm having trouble thinking up new recipes that contain only decent food, preferably anti-inflammatory. Green smoothies are great but you try putting one of those in front of a 14 year old! But they're not a meal are they. We seem to have savory mince and veg, stewed steak and veg, savory mince and veg ...... (I like it but then I'm not interested in food so much now because I know I cant just eat anything anymore). I've got to admit that the meat I am buying from the organic farm is really really nice compared to the stuff I'd normally get in my local supermarket - so different. But the kids aren't really appreciating that.
Its a difficult one but I'm determined to keep to some kind of inflam diet because I so like to be able to WALK!
I got an appointment for a MRI scan yesterday, its next month (which surprised me because there's an eight month waiting list here for MRI). We'll get a better idea then what the damage is then we can discuss surgery. I worry that once this is sorted whether the PsA, if I cant keep it under control, picks somewhere else to attack. AgggggHHHHHHhhh! It's so frustrating! And I just know I'm going to make a lousy cripple if that's where I end up.
Just take note of what's happening with your head while you get deeper into Metho land, it's in my blog what happened to me (though I was on it a while at a high dose before my head was affected - I think, its hard to say because it crept up on me slowly). Not everyone gets this but from what I've read it does happen to a lot of people. There are better options than MTX - even down the drug route. Personally I don't want their poisons any more. I have no faith or trust in the medical profession or anyone who makes money off the back of o
That's supposed to end with the "off the back of our suffering" but for some reason it insists on stopping at "o".