Hello all,
I am new to this forum, after being diagnosed with SLE last year i thought it would be a good idea to interact with people who actually understand the disease. I am 20 and live in Birmingham, England, i gather many people on here are based in the US, so i don't know how much awareness there is about lupus in various parts of the world, but i know here in England, v,v,v few people have heard of it, let alone understand it!!!
I am posting to see if anybody is taking the chemotherapy drug Methotrexate?? I was put on this in january (as i keep nagging to reduce my steroids due to the weight gain i have experienced) perhaps i should explain better: Since August last year i have been on Prednisolone, Hydroxychloroquine , Asprin (to thin my blood), Lazansoprole (for the sickness) and Feurosomide (to reduce water retention), In January i was put on Methotrexate and Folic acid (to reduce the sickness caused by the Methotrexate). Anyway since starting it i have been diagnosed with Chostochondritus, and have had no end of problems, as im sure anybody taking it knows regular fortnightly blood tests are required to monior the drugs reaction for the first few months because it is so toxic, well everytime i had blood taken i was told my white blood cell count was low, there was a problem with my platelts (to be honest u dont really understand all this stuff its just what i was told), my kindey function was affected, and problems i had sufferd previouisly with my liver returned! So every week i was having to go back to my gp for more blood and urine samples, as a busy university student, it greatly affected my studies having to go the doctors or hospital every week!!! So i decided (rightly or wrongly) to just not take it for two weeks, and during those two weeks my tests were fine, so i started taking it again, and the problems continued, now maybe its a fluke because i dont know how long it takes to get into your system, but after doung this several times (not telling my gp) i decided for myself that it proved my point and i decided to stop taking it, and when u told my rheumi 2 weeks ago, even he agreed it had not been a good chouce for me!
Before he prescribed it i asked several questions about it and he informed me many gp's will not presctibe it because there have been several fatalitites in the past and it is a highyl toxic drug that can cause no end of problems if not taken correctly. At that time i wasn't convinced in taking it, however i was desperate to reduce my steroid dose as at the time i was on 30mg a day and i was told taking methotrexate was the only way u could do that.
Well i am now on 7.5 mg of prednisolone a day (that i have gradually managed to reduce over time) and i am not taking methotrexate and am generally feeling well, so basically after all my rambling i want to know if anybody else has had problems with Methotrexate, or been forced into taking a drug they weren't happy with by their dr?
Rambling over!!!
Caz xxxxx:)

Hiya Caroline,

Welcome to a great forum for help, understanding and support. I too am in the UK and I now how the system is and what we have to fight to get recognised. Come here though and you will get support and help whenever you need it.

Now to the metho question. I have been taking this for approx. 14 years and I personally have never ever had a problem with it. I was actually having chemo treatment before that, which made me so very ill, so going on to metho was a breeze hee hee. You have to make sure to take it on the same day each week and also to take your folic acid two days later.

Never ever take any medication if you are not entirely satisfied with it. Always ask questions - just my thing, advising others to ask questions - and don't put anything into your body until you have read as much as you can about it and learned as much as you can.

The thing is though, as with any medications how it affects one person does not necessarily mean it will affect the next person in the same way. I always reckon side effects come in threes - might do, do sometimes do, and rarely do.

Thing is Caroline, I personally don't feel your doctor is right if he is makig a blanket observation about only being able to reduce down your steroids if you take metho. I have been taking steroids since I was 16, over 30 years and I was not taking metho in those days. I was on massive amounts of steroids and over the years I have upped and downed them in a careful and controlled way without the help of another drug to get me to a mangeable dose for my body. I can't understnd what he is saying about this to you.

I too have costonchondritis. Again I have had this for years, before I started taking metho. The things you speak of seem to be your body, and not the drugs you are on. Only talking from a patient viewpoint of living with lupus, and numerous other medicl problems and disabilities and managing my own drug regimes.

Always check on any medcations you're taking. Make sure they don't interact with each other. If you go to the pharmacy, even if it is for a cough linctus, any type of OTC drugs, always make them aware of what medications from the doctor you are taking.

To get to the point of what I want to say hee hee - don't take anything that you have doubts about. You cannot be forced to do so, and you have the right as a patient to refuse any treatment whatsoever.

I hope to speak to you again soon. Take care

goldenwings :angel:

I took methotrexate years ago. It never did anything for me so I got off of it. I used to be on a high dosage of prednisone too. Eventually, over the course of a few years, I was able to get down to 5 mg. of prednisone which I am still on to this day. Now I take plaquenil and prednisone every day and have managed to lose more than 20 lb.!

My husband was on Methotrexate for many years and all he ever did was get really sick and throw up alot. I read up on the medication and was concerned about its effects. When I approached the doctor about it he got extremely upset and said that I shouldn't believe everything I read on the internet. While this is true, I still believed that this medication was bad for my husband and not needed. He quit taking it without his doctor knowing and has been doing great for the last few years. As you said, his tests started to come out fine. This doctor is going to retire soon and so we switched doctors and low and behold, his new doc said that he didn't need the methotrexate. He is even slowly lowering my husbands doses of other meds and he is doing great. He has his days where his joints are sore or when his hands and feet get cold (Reynauds). But for the most part, he is doing so much better. I do think we all need to stand up for ourselves when it comes to our health. For the most part, you do have choices. With all the technology out there today, there are many meds that can do the same thing but effect us each differently. Always ask about alternatives if something doesn't work for you.