I am taking .6 ML of MTX a week, .3 on Friday, .3 on Sat. (I mix it in juice, because I can't inject myself)! Has anybody experienced hair

[Rosi1213]

loss using this medication? Also, the day after or the day of taking it, I sleep for approx. 3 hours in the afternoon, I am exhausted. Anyone else get tired real easy? I feel like I am always tired!

[Hidden]

Hi Rosi

I've never heard of anyone drinking MTX. Is this with your rheumy's knowledge? So you are actually having 12mls a week in two doses. Have you had the tablet form? I used to have tablets once a week, but when I reached 20mg I was too nauseous so went on to injections. Eventually 25mls, once a week. I have heard of hair loss on higher doses - it is a chemotherapy drug after all. As for fatigue, I'm always fatigued. How often do you take your folic acid, and on which day in relation to the MTX?

poemsgalore xx

[Rosi1213 in reply to Hidden]

No Poemsgalore 1, I am taking .6 ml a week, but splitting it up into 2 days (.3 ml a day, 2 x a week) = 15 mg a week. MyRheumy suggested I squirt the liquid from the needle into a glass of juice, since I am a wuss when it comes to needles and I cant afford the pill. It's tasteless and odorless, so everyone is happy! I take 800 mg of folic aci everyday except for the 2 days I take the MTX..Dr's orders.

[Hidden]

I was on 15mg of mtx weekly and experienced fatigue and hairloss. My hair texture was awful and would come out in handfuls when I showered. I became afraid to comb or style it in the end for fear of becoming completely bald. When I came off mtx the fatigue lifted and the hairloss stopped. Now 5 months later I'd say my hair is almost back to its pre mtx state. Unfortunately the fatigue has returned since starting leflunomide. I'm starting to think the Dmards are more responsible for the fatigue than the ra as I wasn't tired at all during the break from meds.

Paula x

[Hidden]

Hi Rosi1213,

I agree with poemsgalore. We have never heard of anyone drinking MTX. And to reiterate poemsgalore concerns, does your rheumatology consultant know that this is what you are doing? if not then you should speak to them about it.

As to the hair loss, MTX may cause thinning of the hair in some instances.

Regards

Beverley (NRAS Helpline)

[Rosi1213 in reply to Hidden]

Like I told Poemsgalor, My Rheumy is the one who suggested I squirt it into a glass of juice......it's painless that way, and affordable for me.

[Hidden in reply to Rosi1213]

Hi Rosi1213

Thanks for that. We have never heard of that before. Always good to learn something new.

Regards

Beverley (NRAS Helpline)

[helixhelix]

I wonder whether you're tired because of the RA rather than the meds? Fatigue is part and parcel of the disease, especially at the beginning when you're still getting it under control.

But like others I'm rather curious why you put the liquid in a drink, and do hope your rheumy knows about it? If you're taking it by mouth then why not use the tablets that are designed to be taken by mouth? Seems a bit of a waste to use the liquid that way as may well be much less effective if not injected. I was petrified of injecting myself, as have a life long phobia of needles, but it really is ok.

[Rosi1213 in reply to helixhelix]

I don't take the pills because I can't afford the pills. I pay $20.00 for the liquid and syringes, as opposed to $100.00 for a month supply of pills. My Rheumy has been in the business for many many years, so if he says I can do it this way, that's how I;m going to do it. I really cannot do the injections!

[helixhelix in reply to Rosi1213]

Isn't it strange how things vary between countries. Here in UK the pills are much cheaper than the injections. Our health service is free at the point of delivery (we contribute via our taxes) but my doc told me that the pills are about £3 a week - around $5 - and the injections about £15 - $25.

[Rosi1213]

I have been taking the MTX since the end of Feb, really afraid of hair loss, I can tell the texture has already changed. My Rheumy compared my dosage of MTX to a cancer patients amount...he said if a cancer patient is taking a bucketful of MTX, in comparison to their dose, I am taking 3 drops...that was comforting, but still nervous about it.......I know I have always been tired, even before the meds, probably from the RA, but even more so right after taking the MTX.. I am so thankful for this group, being able to express your fears, and asking questions. Thank you everyone.....It's good to know others are in the same boat (unfortunately)!

[hatshepsut]

Hi, I inject 20ml MTX per week, always feel a bit wiped out the next day. I have a little hair thinning, but not significant.

I don't like it, but it has helped my RD, so on balance I think it's worth it! M x

[Hidden]

Hi Rosie... sorry you have been diagnosed with this wretched disease. My hair thinned out and is more brittle than before the MTX but I had thick hair so its not even noticeable to other people.

In regards to taking injectable MTX by mouth.... Recently whilst I was in hospital the pharmacist was insistant that gloves be worn when the nurses injected my MTX as he said its cytotoxic and they must follow guidelines for cytotoxic drugs so I was just wondering if lips and mouths are at risk too. Because most of us never heard of putting it in your mouth and I was worried, I rang Pfizer the company who makes my MTX vials and if you want, it might pay you to ring the company who makes yours as its a big price to pay to get it wrong. Its not that I didnt believe you, I was worried we might have a flock of people drinking the stuff...

Pfizer said the injectable MTX is "only meant for injection and should under no circumstances be taken by mouth". Not only is it cytotoxic but it also is made so that it will be absorbed into the cells once injected and they could not guarantee it would would even work if ingested. They said its the method of administration that makes the difference in how its absorbed as they make it in different ways for tablets vs injection. So if you were to squash and inject tablets then it wouldnt be more readily absorbed like you would if you have the proper vials and it would probably have little effect on your RA. Same with the injection... it wont work like proper injections if taken orally not to mention the other risks.

I know money is a problem and Im not familiar with your health system there but maybe others on here can suggest some cheaper way of getting it - if you havent had MTX before then it would be good to try the tablets first if you cant tolerate to inject. I wont say 'dont like to inject' as I think we all dislike it

Your doc however, is right, in that our doses are a lot less than chemotherapy patients - we take up to 25mg and cancer patients have from 100mg to thousands but we are on it for life which can add up. Its quite a safe drug for RA and hundreds of thousands use it for that without incident but you should be aware that although rare, it can have side effects much worse than just thinning of your hair.

PS.. I couldnt find guidelines for the hospital I was in but here they are for our biggest children's hospital in Melbourne Australia.... it shows you how serious they are about cytotoxic drug administration and spills-(rch.org.au/rchcpg/hospital_... sorry it wont link properly because Im in Australia and I cant get into your ones because it keeps coming up that they can only be accessed from UK so maybe put the word cytotoxic guidelines into your search engine and one of your hospitals should give you access to theirs.

And here is a link re taking meds with juices which includes mtx...

canada.com/topics/news/stor...

I hope this helped not complicated things for you but as I suggested, ring the company and get their advice. All we want is to be painfree and stop the progression of our RA and we cant do that if our meds arent working in us correctly.

-gail

[nomoreheels in reply to Hidden]

Hiya Netbuddy. I found the Canadian report very interesting. I don't & never have taken any of my meds with juice as I was aware of the problems about drug absorption through a friend of mine with a heart issue being warned, particularly not grapefruit juice. Is confession good for the soul? I take them with my morning coffee (once it's cooled a little) as if one gets stuck I find it doesn't taste as yukky as when taken with water. It has made me think though if I'm doing the right thing in doing this & intend raising the question at my next Rheumy appointment. I do take my alendronic acid with a large glass of water first thing though as directed as that one concerns be a bit because of family history & the oesophagus problems that can cause & I don't have a coffee until later on in the morning on Saturday when I take it.

So thanks for posting the link.

[Hidden in reply to nomoreheels]

Happy to help.... I knew about the juice and just thought I would mention it in case there are others who didnt know.

[Hidden]

I was on 25mls injections and never even had any hair thinning. I had to stop taking it in January 2013 as I was about to start chemotherapy for breast cancer - then I lost ALL my hair...lol

[Susiej38]

Hi Rosi, I too, have had thinning hair and hair loss on MTX. It makes me very sad, but I had rather be bald than be like I was with pain. Trying to deal with the pain and inflammation was not living in my opinion. I was also having itchy scalp and eyebrows which was driving me crazy. I went to a dermatologist. His suggestion was to get off MTX which is not an option as far as I'm concerned. He also suggested taking 5000mcg of Biotin daily, which is a vitamin supplement that helps with hair and nail growth. My rheumatologist also upped my dosage of folic acid to 2 mg a day. This has definitely helped the itching and I believe has slowed down hair loss. I take 20 mg of MTX a week and I inject it half and half Wed and Thurs evenings. I would really encourage you to get help and do the injections. Yes, it is scary, but after about 6 weeks I got to where I do it quickly and get it over with as fast as I can. I do believe the MTX contributes to fatigue and I am trying to come to terms with that and know I don't have the energy I once had. My rheumatologist divided my dosage of MTX specifically for that reason and it did help. Good luck!

[Niko319]

My son was just diagnosed with Juvenile RA. We have just developed the treatment plan for my 4 year old. We are about our start with MTX as well as the initial injects. We are very concerned about giving him the MTX. We are to give him the injection liquid, orally as well. It is .3 ml once a week with the stronger folicacid the next day. The doctor said the pharmacy will tell us and have a problem saying to take it orally but but they support this. This is from a pediatric RA specialist. We are nervous as this is the first day we are going to give to him.

So we know we need to give it 1 time a week, same day and trying to be around same time. We are worried about the reaction, so we will give this first dose mid day instead of bedtime so we can see. But as an adult we sometimes take meds at night so we can sleep through some of potential side effects but I think we want to see this first.

For a 4 year old and taking .3 ml I am hoping the reaction will be minimal. Just very nervous about the effect and long term use for a child.

[nomoreheels in reply to Niko319]

I understand your concerns, it must be heart wrenching for you. Are you in the UK? If you are then it's possible with your son being so young he could be prescribed the syrup form, as I believe it's available in cases such as this. Think it's worth the question.

Your son is being introduced to MTX in a small dose so hopefully he won't have too many problems but think you're doing the sensible thing giving it to him when you intend to.

Hope he gets some relief & keep in touch to let us know how he's getting on.

[Bumblbee]

Yeah I suffered hair loss big time takes moths to stop even after you come methotrexate I will never take it again