I was prescribed Methotrexate a month ago due to having severe reaction to other meds. The hospital pharmacy said to take the doseage 4 times for 2 weeks then 5 times for 2 weeks with folic acid on the other days, so I did. Just found out that this is wrong and Methotrexate should have been taken on the same day, i.e. all four tabs etc. My GP went mad and said I will have problems due to this. I have noticed that I am bleeding easily when I knock my self accidentally. Has anyone else had this?
Methotrexate - confusion over when to take it, so... - LUPUS UK
When you say four times for two weeks do you mean four tablets once a week for two weeks? I hope so but if you have been taking four a day for two weeks then you should be admitted to hospital I think because this drug is cytotoxic and should only be taken once a week in order for the body to recover for the period of time in between. It is too dangerous a drug to take the wrong doses at the wrong intervals. The bruising and bleeding worries me too.
Your GP should not have shouted at you but instead at the hospital pharmacy for not being more clear! Did he or she tell you what they wanted you to do about this error or what problems you will encounter now?
I was taking one each day so it is not as bad as it could have been worse. My GP was worried as I have strong reactions to tablets, usually with a fever of over 103 and vomiting for 5-6 hours, have special tabs to stop the sickness now.
I couldn't agree more with Twitchy that you should be in hospital as I think there is an antidote they can give if you've overdosed!. Hope you get this sorted soon. X
I have never taken MTX. Never heard of anyone who received misleading dosage instructions. Usually, consultants issue a letter to state how much to take to GP. So the responsibility rests on your GP (certainly, you shouldn't have been shouted at - sounds like GP panicking) . As far as I can see, these drugs are often not directly prescribed by GPs (?) , and that's when the problems happen. GP don't know enough as they are not prescribing themselves and leave everything to the patients. It's not a good situation. As Twitchy said, it's a serious drug to mess with. GP should be allowed to prescribe these drugs and look after patients much better that way.
Perhaps, someone who is on MTX could comment. x
Hi, the letter was not sent out to me although the GP said it was, I rang up to find out what the next dosage should be to get a new prescription and asked about the letter to find out the GP had it a month ago! I then got a copy.
I wish that kind of stuff wouldn't happen. Somehow the human being being treated gets missed in the paperwork.
You normally take methotrexate on a Monday and the folic acid on the other days. This helps your body overcome some of the affects
I personally would ring your consultant's secretary and ask for advice
You could also ring 111 and explain what's happened they will probably send you to your local hospital for blood test
Hope this helps. Have been on methotrexate for about 6yrs now
Read the leaflet in the box of tablets it will also tell you the best cause of action
Hi, I didn't get a leaflet, just a tablet bottle with instructions on the side, misleading!
Hope this link works its a similar type of leaflet i was given when I started on methotrexate
Thanks for this, don't know why I didn't get one! I have terrible itching already and breathlessness, so hope it doesn't get any worse! My local pharmacist told me to go to the surgery for a leaflet as they have to have one, but they didn't! The receptionist then called a GP for me to speak to, this is how I found out about the meds being taken incorrectly. The surgery expected the hospital to let me know and for my hospital letter to arrive, neither happened!
Its not clear from your message how much you've taken and whether you've overdosed. Dont panic, but it does sound as though you need to tell health professionals clearly how much you've taken and what your symptoms are. Hope you're OK.
I now need blood tests, it was the hospital that did not give me clear advice, as the label says take four for 2 weeks then 5 for 2 weeks and take folic acid on the other days. I didn't realise that the tabs were for the same day.
Its a bummer isn't it. I do find though, slowing down and not overdoing things does help with this wretched illness. Not what you want to do all the time is it.
If you're used to "doing a lot," Lupus tries to stop that! It's up to US to stop the LUPUS!
Sorry I don't want to be here under false pretences. I've got ra not lupus but came on forum because Drs thought I might have it a while ago. But similar things apply about fatigue etc i think
Absolutely! All autoiimune diseases "mimic" each other. However, there are prescribed meds that can control your RA and possibly get your labs back to normal. Unfortunately, those of us with Lupus, unless we are young and go into remission, ours can never be normal. You are welcome here! However, you may be able to relate more personally on an RA forum. Not that we are "abnormal." We are just "different." I haven't read any posts yet about anyone with SLE going into remission. Guys???? Have you??
I came on this forum because my rheumys thought I might have lupus, but that if i'd had RA it was in remission. So they took me off all my meds and things have gone downhill very badly since. People might be interested to know that I'd had a lupus like butterfly rash on my face but I went to a photosensitivity clinic in Dundee and they discovered it was sensitivity to perfume in skin products. Since then I haven't had any problems though I do wear a hat in the sun. None of these diseases are easy to live with, tennis senior and the RA meds can often lead to further complications or just stop working.
Sorry to hear they withdrew the meds, it does help to have something. I did take myself off the steroids, it took some time to do so but it is good to know I have them when I am very bad.
Yes I know about the RA meds. I have a friend with RA. But her life had been fine until one day the meds took a toll. There are no meds to treat SLE. They try and treat the symptoms. The disease is permanent.
it is ridiculous that SLE does not have a dedicated drug, I am like a guinea pig, always trying something out which usually makes me ill and worse!
There is Plaquinel for Discoid Lupus which usually helps people. SLE is an internal form of Lupus, and no, there are no drugs that can really help. The steroids I took for 4 days was for my platelets that dropped to 32,000. My arms and legs are covered with bruising from the Coumadin and low platelet count. I finally got rid of that bush outside this morning, but I didn't realize my gardener put some cactus in my garden. Bleeding again! One on my leg and another on my arm! I look like I've been hit by a truck - all the time! Black and blue and bleeding constantly. If there was a treatment for SLE, my Dad would not have died at age 67. There is none. As time goes on, you develop more and more problems. You have to be lucky to wake up every morning and go on with your life!!!
I have been on Plaquinel, not sure if I am supposed to still take it but when I was put on azathioprine and was severely ill, I stopped taking both. Poor you with the bleeding. I had terrible hands a few weeks ago with splitting and bleeding. Now layers of my hands have come off and very sore.
Try Aquaphor! It's sort of like a vaseline but better! I use it everywhere that my skin is dry and cracking. I didn't want to take any meds for a disease with no cure. I read about the side effects from so many people that I'd rather suffer from the disease than take something to make me feel perhaps worse. Careful with the Plaquinel. It CAN affect your eyes eventually. I have to use SPiriva, an inhaler, because I also have COPD. One eye doctor told me I would get cataracts from it. I did. I had them removed and also had laser afterwards. My eye sight is not great, but I could not make a "choice" between breathing or seeing! I need both! Time to put more triple antibiotic ointment on my cuts. I should just use it as a "body lotion!" I am ALWAYS getting into trouble with cuts and bruises!
That's interesting as my eyesight is being treated by a specialist, I saw her every 3 months for a year now my sight is a bit better and the infections not so bad (used a spray that my son got from the USA that is sprayed under the tongue) and my sight is better! I have a weak chest and do suffer breathing, I sound terrible when it is warm or I have to walk somewhere! I have taken myself off the Plaquinel for a while as I was worried.
Will look for the cream. x
Good idea to go off the Plaquinel for a while - and if you can manage without, even better! Everything medication affects something else. Cataract surgery is not terrible so if that is the only "side effect," then don't be afraid to take it. However, I do know one person with Discoid Lupus who took Plaquinel for years and her husband told me she is having lots of problems with her eye sight. I hesitate to try anything new unless I really have to. I ordered generic Spiriva from Canada. Used one last night. Played tennis this morning, and needed an oxygen mask! Dizzy and short of breath! Not the same as the Spiriva made in the US, which costs a fortune (so says my insurance company). I am now waiting for my GP to call in the Spiriva inhaler that's a spray - just came out on the market. 3 phone calls so far -- and it has to be ordered and we are leaving on Friday until Monday. I may have to get used to not breathing if they don't make that phone call to my pharmacy! What is so difficult to understand that I need help?????? Doctors are overwhelmed in Florida. They don't "have time" for everyone!
RA is a dreadful disease. It can be so painful, disfiguring and disabling. I see so many people struggling with the flare ups and associated fatigue.
Many of them are on the same meds as me and come for monthly bloods.
Your welcome on this site as yes we do overlap symptoms and due to that we can empathise with each other.
Thankyou for your hospitality! I've just heard I'm to have the knee replacement on 6th July. Am very apprehensive as things tend to happen to me - but it is an attempt to get a bit back to normal and on my feet.
I'm on ritixumab and I think people with lupus get this too. So far its calmed my RA down - but I hope it lasts til after my op.
Bleeding is a part of my life. I take Coumadin plus I have ITP - abnormal low platelet count. My blood doesn't clot. When was the last time you had your platlets checked?
I do bleed a lot, the last time I was tested was around 5 years ago, I used to have a problem to stop bleeding when I was cut.
Iona - What was your platelet count? My first "episode, in 2011, when I was involved in a competitive tennis match on my team, I hit my leg with my racket and cut it. The pro couldn't stop the bleeding. My sock and shoe on that foot were totally soaked in blood. After 20 minutes I went back out on the court, but lost the match because I was still "dripping." My opponent was fresh to me, as she was annoyed at a long medical time-out. I went to my PCP, who had ordered labs 6 weeks prior and everything was totally normal. He ordered labs again - and that's when the s--- hit the fan! I had more abnormals than normals! My platelets went from the 200's to 88. My white count went from 4.8 to 2, and my hemoglobin was way below normal. Onto several other doctors, including a bone marrow biopsy to try and figure out why my labs suddenly changed, and he came up with MDS - meylodysplasia - a "pre-leukemic" condition - but I was lucky - mine was "low risk." Onto several rhematologists and finally a diagnosis that was hard to accept: Systemic Lupus. That was 4 years ago. At first, my reaction was like everyone else's - "I can't have Lupus. I feel OK. My bones don't hurt. My joints don't hurt. I have energy." As time went on, eventually, all of the symptoms appeared - and then, came the blood clots in my leg. My doctor was giving me shots of Procrit every week to raise my hemoglobin. I had a blood transfusion.
One of the warnings about Procrit is that if you have a pre-disposition to form clots (the factor which eventually tested positive), Procrit should not have been given. I also had Vitamin B12 deficiency. Had my hematologist checked my B12 level, he would have seen that I was low (Pernicious Anemia). He messed up. I now take a B12 every morning and although my hemoglobin is a little below normal, I don't need blood transfusions. The ITP came on about two years after my initial diagnosis. Up until then, my platelets were low, but started to drop - when they hit 32,000, they put me on a massive steroid dose. It killed my stomach! I said never again! In one month, after stopping the steroids, the platelets were back to the 40's, and eventually stayed between 50-68, which, for me, is "not bad."
I used to have labs every week, then "graduated" to every two weeks, and now I'm up to once a month! I am on Coumadin for life though - because I have the pre-disposition for blood clots. The other blood thinners have no generic and they are not reversible with a shot of Vitamin K, as Coumadin is. I hate the "avoid greens, etc." diet, but I could not afford the other blood thinners, and, because I play tennis, and am a bit clumsy and fall a lot, I have to take the Coumadin. I had to give up alcohol completely as they thin the blood - not that I drank that much. I can no longer eat cranberry sauce which I love - that thins your blood too. Sometimes I "cheat" a little with a sip of wine, or a bite of greens (iceberg lettuce is OK), but after 4 years, I've accepted where I'm at. It does take that long to accept. Many people on this site are not there yet - but these are the cards we've been dealt and we have to "play the game." Lupus DOES suck!
Hi, I don't remember what they were. I should have been tested more though, I had a small op on my sinus inside the nose, it took a year to stop the serious nose bleeds and it was disgusting, happening every day. I bleed a lot! I don't heal easily after a cut.
I had problems with my liver for 20 years and had a liver count higher than an alcoholic, being very thin, no one believed me, I wasn't checked for Lupus although this was one of the things it could have been. I had pernicious anemia and had to have injections daily.
Then my body collapsed, infections turned serious within a few days the GP finally diagnosed me with Lupus, affecting my liver, kidney, joints and eyes, meaning I was in hospital a lot. Also have brittle bones, Fibromyalgia and arthritis. Azathioprine made me very ill, steroids also and now on methotrexate.
I too am very clumsy and fall a lot too, somehow I seem walk into things that I know are there too!
I have a lot of relapses as I do try to push myself. The hardest thing is that 'friends' think I am fine and put it on, they don't see me for a lot of the time when I am sick in bed.
I changed my Lupus specialist as she was not interested in me or looking at my notes, I preferred the ones who stood in for her who gave me good advice and my GP who is friends with the specialist, then changed towards me. She forbid me to look at these forums as I questioned her about some of my Lupus symptoms. She clearly did not know what Lupus really is.
You sound SO much like me! I'm thin as well - but was never really "fat." I'm attractive and living in Florida, I have a suntan. So people don't believe that I am "sick." The bleeding is concerning. You really need to get some labs done. I go thru tube after tube of triple antibiotic ointment. I have to have hundreds of band aids in the house of all sizes, plus gauze pads and ace bandage that sticks to itself. Yes me too - I walk into walls and furniture and bleed all the time! Peroxide is my best friend! It takes out blood stains. Why are people so jaded that if you are thin, you ar healthy? More often, it's the heavy people who tell you your are "too thin" because they would like to be. However, would they like the reason WHY? I've written to the the Lupus Foundation to give us more exposure and try to explain, in very elementary language, what Lupus is. However, they rarely respond - and they don't do it!!! I even wrote to my local newspaper about "Lupus Awareness Day," asking people to wear purple. They didn't. I think Lupus is failing in communication, and it angers me that they take it SO lightly!!! I often wonder if the powers that be in that organization are as sick as some of us are!!!!! Do we even KNOW if they HAVE Lupus????? I rarely see anything published in any newspaper article about people having Lupus. When Nick Canon, who is married to Mariah Carey, came down with Lupus Nephritis, he sure got a lot of publicity! We are not famous - but we have the same rights as he has to spread the word! My Dad had Lupus Nephritis and it killed him. I never saw any newspaper articles about my Dad! I guess he wasn't famous enough! Or at all! He was "only my Dad." I only had him a little more than half of my life. But he wasn't married to a star - he was married to my Mom, and she was only a star to ME! :-}
Totally agree with you. No one really knows about Lupus and my GP has the cheek to tell me what Lupus is and what symptoms I have or not, like she is really going through it and not looking on-line to find out! It bothers me that either people think I am a fake or that they cannot take it in I am too tired to do things and really do need to rest! When I am clumsy I am sure people think I have been drinking, during my relapse I cannot think straight and have to search for the right words, it is the fatigue. I had to fight to get any pain killers and resorted to seeing another GP in the surgery who felt sorry for me, the others would not give me anything 'until they had checked with my nominated GP'. After this I was able to sleep better for the first time. Now my GP feels obliged to give me some pain killers. I was almost overdosing on over the counter drugs which were not strong enough so slept very little and was even worse the next day.
Lona -- You have to learn that no one will ever believe us as long as we "don't look sick! Even the so-called experts, who can't "feel" what we feel, cannot really relate to the agony we go thru. Have you ever had a Lupus migraine? Someone on this Forum said they had to go to the ER and get a shot of morphine because the pain was so unbearable. I had one for 2 days. If only we could "pass on" some of our pain and frustration, perhaps they would understand! I am here because the forum in the US had a really nasty "Moderator." If she didn't like anything you wrote, she would block you out. I once talked about steroids and weight. She took it personally and blocked me out permanently. You cannot get by an Administrator - the control the Forums. I'm thinking she has a weight problem - and perhaps not related to medicine. You just keep hanging in there and know that we all share your pain and misery and frustration! I wonder how many more there are out there like us who walk into walls???? lol We're going away for 3 days - my first aid bag, with bandages, ointment, etc. will be more full than my suitcase!
So true, all you are saying. I know of people in half the pain taking morphine. My back is also not good, 3 prolapsed discs and one disintegrating, I have nerve pain daily, sometimes it is just awful, still nothing from my GP until I saw one of her colleagues, as she said she couldn't help me. My feet swell badly so hard to walk and difficult to relax until the pain goes, still nothing from this person. She put something on the file so that others could not treat me to protect herself I think, until one of her colleagues really listened to me. I couldn't even get one of the others to go through my blood tests when I was told to come in due to some problem with them! It is annoying how everyone says I look well, it is due to weight and size, with the steroids I was larger and then everyone seemed to think I was ill but eating way too much. I had one 'friend' tell me she had a diet sheet that might help me control my eating!
You take methotrexate for one day say friday then you take folic acid one for 6 day over the weeks you increase methotrexate
Hi Annie, yes I know now, just wish the instructions on the bottle had been more clear!