i have been on methotrexate inject since xmas. i took 20 mg tabs for 2 years and had a bit of sickness then had a year off as i was so much better. i started with severe symptoms last winter so started the injections. my psa great at the mo and they are working well again but i have been feeling increaingly unwell i cant see my rhumatologise for two months due to waiting lists. i have started getting migrains after my injection. if i take it before bed i wake up with a headach and if i take it earlier on i end up throwing up and having to go to bed. im increasingly tired and get a lot of cramps in my stomach and back not psa. i get a lot of ulars and my gums bleed a lot. i seem to have my monthly period then a week later a smaller one then a week off then a smaller one then a week off then my period again. im covered in bruises and i hardly knock myself. my dr jut says we neeed to do bloods n wait for rhumatology but i cant get time off work for bloods for 3 more weeks. i had been so well that i built up a nice manageable lifestyle and my psa great but i feel like im dying. can methotrexate give any of these symptom. what does it do to ur body? i dont want to stop taking it as it work so well for me but i litterly feel like im dying from internal diesese and nobody taking me seriously. they jut say it must be psa but i know difference. can anyone tell me effects of methotrexate? im also really bad at remembering it the same time each week cos i know its gonna make me feel so i'll i put it off until i have time to be ill.
Brain fog is a common symptom of PsA. Being covered in bruises from the MTX is not a common SE but you can bruise easily. Headaches are common but not migraines. Pain in your stomach and cramps are not a SE of MTX but everyone does react differently. I would have severe flu like symptoms that would last a couple of days and I would be flat out on the bed or sofa not moving. I would have extreme fatigue with the MTX also. You must take your MTX on the same day every week and around the same time if possible. That could be why you are having such a rough time. You must make time for yourself not put off your disease. It can't wait.
Definitely get your bloodwork done and tell your GP that something is wrong. If you are balled up with cramps get to emergency while you are like that then maybe someone will take you seriously. Or go to your doctor and make him listen.
I am sorry you are having such a bad go of things right now. If you can follow the same time schedule for you MTX maybe things will improve. it took about 4 months for me to start feeling better good luck to you
hi thanks i been injecting since december last year so a while i stopped for 4 weeks in march after getting shingles a less common side effect. since starting again i have been unable to see my dr. i am only 29 and have 3 small children and i just dont have time for them to take me in n do tests n stuff or change things that may make me worse. i know its silly im just hoping for an easy answer on here if anyone been similar so i dont have to go. im actually really scared i my have liver damage or something but i just dont know what to look for and dont want to tell people cos i dont want worry or fuss or to have to go back into hosp. i had been ok after shingles for a few weeks then went on a hen night with some friends and had too much to drink ....i never normally drink ...and the many but lillte symptoms started appearing and getting worse since then. im prob just being silly but all the stuff they tell u when u first start taking it stick in ur head. and is such a worry. i can cope with cramps etc just worried its serious and dare not tell anyone
Hi Gemma you really do need to get to the doctor and tell him what is going on. While the cramps may not be serious getting your bloodwork done and sticking to a schedule with your MTX is. There is no easy answer with an autoimmune disease nor is there and easy fix. Shingles is a serious complication and you really should look out for yourself. If not for you then for your kids.
This is not unusual, Methotrexate did not help me, and I have since moved on to Enbrel, I did get the mouth blisters, in and outside of the mouth. There are as many here helped by it than not!
Since you do feel it is helping you, may I suggest that you CALL THE DOCTOR AGAIN, insist on talking to a nurse or the Physicians Assistant about an adverse reaction. Perhaps you could firmly asked to be called in on a cancellation.
I take Phenergan 30-60 minutes before I take Morphine, it keeps the nausea and vomiting at bay, ask about that, but by all means get to them somehow, it could cause you some problems that you would be better without!
i know i need to go just scared n really down about it all. i need a kick up the bum. im frightened they gonna have to stop it n i dont want to go back to not being able to walk or care for myself or the kids. ive been so indipendant for a while and i love it. just keep thinking a bit of pain inside n a bit of blood i can cope with n i can time it for when i sick but i cant cope with not walking again. but then i may be really hurting myself. sorry just confused n scared feeling rubbish. i never thought i would be able to move so well after years n years of walking sticks n help
I was terrified with my diganosis and had no one to talk to about it. I researched until I was crosseyed. I had the nurse to call and had a BFF with RA. They got me through the horrible fears I had. I had never been sick before. I could count on one hand how may times I had been ill an taken an antibiotic. ( I have been on saturated since having PsA LOL)
I have been unable to walk at times since I was diagnosed, from enthesitis and y original pain was both my knees gone and needing to be replaced. I have had 2 total knee replacements because of PsA. Humira and MTX keep me walking.
There are other drugs out there that you can take if the MTX is failing you. But how do you know it is? You haven't had your bloodwork done! Get there and tell the doctor how scared you are maybe there is a rheum nurse to talk too or just to listen to your feelings.
You have been through it, girl! I feel so bad that this had to happen to you!
Gemma, our 2trees is one smart cookie, and full of compassion and good advice, please listen to her. There are so many who know so much about this drug, this conversation will go on, believe me, in the meantime, see if you can't see your Doc, talk to a nurse, tell them what you are telling us, that you are afraid that if they take it away that you will loose your ability to walk! Are they really that intimidating? I can tell my Doctors anything, course I have been through so many that after a while you don't have anything left to hide anyway.
I have read your post and am sorry you are having such problems on the injectable MTX. Both Trees and SK have given you some good advice. I have been on the injectable form of MTX for years now. It can be a love hate relationship at times. I see you have children and as a parent myself,a wee bit older though my baby is 27. We always put our children first BUT if MOM is not healthy enough to take care of her children ??? You have to come first this time Gemma. Some of the side effects like fatigue as much as 24 -36 hours in my case, is normal. As stated, you do not take it on a consistent Day or Time, you should be. I usually have mine in the evening and give my self the next day and a half if I need it(that works for me)and you can adjust yours to your needs BUT BE CONSISTENT. And first thing I would like you to do is get your blood work done because it's just that important. I think you will feel better I hope. It is a terrible disease and if you have to convince a dr. of that then you have the wrong dr. . If you have any questions, just ask I'll do my best to help. Stay Well....... Rich
MTX is only one of several DMRDS there are others...... If you can't tolerate this one, they have others. But there is no reason to put up with the misery you have. They have meds to stop all the symptoms you are having. The simple fact is the sensitivity you are having along with the results is encouraging (when you aren't banging your head on the toilet) You are responding so many don't. But if you simply can't tolerate, then there are the biogics etc.
It is rare that they can't find a way around it. Are you taking your folic acid supplements? Remember never on your injection day
i know i need to go just scared n really down about it all. i need a kick up the bum. im frightened they gonna have to stop it n i dont want to go back to not being able to walk or care for myself or the kids. ive been so indipendant for a while and i love it. just keep thinking a bit of pain inside n a bit of blood i can cope with n i can time it for when i sick but i cant cope with not walking again. but then i may be really hurting myself. sorry just confused n scared feeling rubbish. i never thought i would be able to move so well after years n years of walking sticks n help
Alright Gemma, I just called in my 'Big Guns' there, those two guys are very wise and experienced on this, so please, talk to us all you need to but get into the ACTION MODE now and either get to the Rheum, or get to a general practioner, or get to a hospital!!!!!!!!!!!!!!!!!!!!!
LISTEN TO WHAT YOUR BODY IS TELLING YOU IN A VERY LOUD VOICE! PLEASE?
Hi Gemma! Jumping in here to say that you NEED to see a doctor. It's VERY hard to even think about going off a medication that made it possible for you to walk again and function so much better, but it will be even harder if these side effects lead to something more serious. I recently had to go off of the med that led to me regaining the ability to walk - to the point where I incredibly rarely used my wheelchair and seldom needed my canes - so I could go on another drug that might help control my spondylits, which was spiraling out of control. It was a difficult decision to make, but being back in a wheelchair or using canes is worth it if the new med works - and even if it doesn't, it's worth the shot at better health.
If your gp isn't listening and your rheumy can't see you, get yourself to the hospital. The first rule in good parenting is that you need to take good care of you to take good care of the kids...just like in an airplane, you put the oxygen mask on yourself before your child so you can be around to help them. If this means dropping everything, including work, to go get bloodwork and see a doctor, then so be it. The symptoms you're experiencing sound BAD. If you have any combination of these symptoms: pale skin, easy bruising or bleeding, unusual weakness, mouth sores, nausea, vomiting, black or bloody stools, coughing up blood or vomit that looks like coffee grounds, and urinating less than usual or not at all, you may be taking too much mtx - these are symptoms of mtx overdose, which could be fatal. You need doctor care and bloodwork done ASAP. This doesn't mean you have to go off mtx, it may simply mean you need to adjust your dosage
Gemma, you need to see your GP at once and get those blood tests ASAP. The bruising without any cause worries me. I'm not a medical person and don't want to make any kind of guesses here but you need to bite the bullet and get those tests. I can fully appreciate the dilemma you face with your small children but you need to make sure that you AREN'T ignoring dangerous symptoms because you DO have the little ones dependent upon you. I won't get into why I'm worried (trust me on this one) but please do make the call.
hi im ok i called dr and there full due to double bank hol so im booked in for tues for a blood test. my work are very unsupportive. im a nursary nurse and have to be well. i have only been there since xmas while ive been well. and they do pull paces when i dont get on the forrr with the kids i just laugh it of saying these old knees. but it hurts. i would love to get on the floor and play with them and my own children but i havnt been able to kneel ir sit of a floor for 9 years. i spend so much time and energy hiding whats wrong with me because nobody understands. my family can be the worst as i have been so well with mobility if i do have a off or slow day they think im putting it on to get out of something so i end up doing things to prove a point that im ok whitch can be so painful and draining. i cant loose my job firstly because i love it and there arnt any other jobs about at the moment it took a year to find this one. im also studying a degree part time and am falling behind and my tutor is putting the pressure on. if anything is wrong and i have to slow down everything is gonna fall apart i never thought i would have the ggreat life i do. job mobility indipendance. i had a half dose of mtx this week then the other half a few days later. i have been doing that a lot taking it in smaller doses over the week so i dont get the sickness and headach could that be why im getting all the other ymptoms? my gp dosnt know anything about psa so whenever i have questions she just sends me to rhumatologist but there always a long waiting list to see him. u get a appointment every 6 months and that it. the nurse at the dr deals with all the bloods but if anything needs checking or changing they just put u back on a waiting list to see him and that can take a few months. english system not great. i think im just really tired and depressed n my sill body cant keep up. thanks for all advice and support. im so glad i acme back on here. i havent been on for a year as i was so well but with no help in the real world im glad i can come on here and be honest and people get it n understand x
Hi GEmma so glad you have made an appt. Please tell the doctor about what you are going through. If more people know what is wrong maybe there will be more support. good luck
Yes, please do come back again! We DO understand what you're going through physically and mentally. And I think sooner or later you are going to need to have a REALLY good talk with the family, including some supporting documentation and conversations from real people here, to convince your family how sick you are. I also worked for a brief time at a nursery and couldn't bend down, get on the floor very easily or even pick up a child anymore, due to the pain in my elbows. Hadn't a clue what was happening, but it was miserable.
Have you ever considered being a nurse on a children's ward? Maybe when the economy improves a bit? I'm just thinking that your job AND your degree work is a bit much for you.
Please be kind to yourself. You're doing the very best that you can do. Don't do like I did and blow yourself out from the pain and overwork.
Also, VERY glad that you have a doctor's appt. PLEASE tell him all of those symptoms, as some are rather disturbing.
Please let us know how things go for you at the doctor. Sorry about the waiting time for a rheumy. That stinks!
hi my aim in life is to be a childrens nurse. its such a long way off though. i did a pre nursing deploma last year but didnt think i would cope with uni yet so i got this nursary job for experience and am doing a degree in childcare so hopefully i will have enough qualifications to get to uni. its just such a hard course over 4 years and no part time option or help. i dont want to start then have to stop half way as i am nearly 30 and it has taken me all of my 20s to get this well ....i started with psa at 21 but no treatment untill 25 when i had compleated my family so its my own fault for how bad i got. i also have ptsd from being kidnaped as a child and my psychologist is really pushing me at the mo. im all over the place wwith my meds and i just need everything to stop but if frightened if i stop i will loose control. the more i do and harde i work the less anxiety i have and the more independant i feel with the psa. but its starting to take its toll. i feel like im walking a tight rope. i just want a normal full life with no memories and noe physical illness :'( im sick n scared and dont know what to do anymore without everyone knowing how bad everything is getting. aaaaarrrrrrhhhhhh sorry thanks for the vent maybe i will feel better after this rant. technically i have told people now. thats half the battle surely :,(