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MTX Question Again Options
Paula-C
#1 Posted : Saturday, October 12, 2013 5:21:36 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 838
Location: Nottinghamshire
Hello

I know this topic's been talked about many times on here but I just need to know something. I've been on MTX since 2010, changed to injections September 2011. It was after changing to injections that I noticed that my hair was getting thinner. I had a good head of hair and at the time wasn't too bothered about it, I did mention it to my consultant and he upped my folic acid from one a week to one a day (even MTX days). ( Profile picture taken pre MTX when I had a lovely mop of hair). I don't think it's made any difference and it is now really beginning to bother me. I mentioned this to my nurse at my last assessment and asked about reducing MTX but because I told her that I had had a wobble with my RA she told me to leave it for the time being, adding that she doesn't think that it will be MTX causing it anyway because by now it would have settled down. She mentioned it could be my thyroid but I had that tested when I had an RA review at my doctors a few weeks before I saw her and it is well within the normal range.

Don't get me wrong here, I know that there is far more worse things that RA and the drugs can throw at me and anyone suffering at the moment may think that this is trivial but I'm afraid it's not to me. It's really beginning to bother me, up to the point that I am in two minds to cut my MTX injections down to every other week. Remembering how bad my RA was while I was waiting to start Enbrel, I really don't think that it's doing anything anyway.

I had my hair done a few days ago and my hairdresser agrees that it is not as thick as it use to be, but assured me that I've still got a good head of hair, it's the top of my head that I noticed it and that's really only the bit that I see when I look in the mirror. He told me that the nurse is wrong and while I am on a chemo type drug my hair will suffer.

So my question is......who is right and who is wrong. Should it settle down after a while or does it in just continue while you are taking MTX? What is other peoples experiences.

Paula xx
LouiseMc
#2 Posted : Saturday, October 12, 2013 6:01:54 PM Quote
Rank: Advanced Member

Groups: Registered

Joined: 4/20/2010
Posts: 153
Location: Kent
Hi Paula,

I haven't experienced that myself, but I wouldn't be surprised if it was caused by mtx as it's such a strong drug isn't it.

My friend had the same problem when she was warfarin, the meds are so strong arnt they.

I know thyroid conditions can also cause hair loss. I have an under active thyroid, I've found on here that that a lot of us with RA have thyroid problems as well.

Sorry I couldn't be of more help. Unsure

Take care
Lou xx
I love people who can make you smile even when you do not feel like smiling. x
suzanne_p
#3 Posted : Tuesday, October 15, 2013 3:14:58 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 8/25/2010
Posts: 1,289
Location: Buckinghamshire
hi Paula,

this is by no means trivial at all.

i read this the other day but just got around to popping on to post ( i am getting out of the habit of posting as i read from my tablet )

i was wondering what the strength of the Methotrexate injections are? it's something i have never known, do they come in one strength? other thing i was thinking about from previous posts is about upping the Folic Acid, i know we all take varying doses.

for what it's worth i reckon the Enbrel is the drug that's working for you mostly, but of course i can only presume that since you have done so much better since starting it. as an example i have just finished taking Hydroxy ( been weaning off it for 3 months now ) as you know the Humira works for me.

i take 10mg Methotrexate which i know is a low dose ( i was up to 20mg ) at one time, and it really messed with my sleep and vivid horrible dreams when i was only half asleep hence back down to 10mg, just putting my info on to give you an idea.

i think it's worth pursuing on the Methotrexate front myself as you have been cleared re Thyroid.

do come back and let's know how things are going,

Suzanne x

Paula-C
#4 Posted : Tuesday, October 15, 2013 8:49:17 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 838
Location: Nottinghamshire
Thank you ladies for your replies.

I'm currently taking 17.5mg MTX. I was taking 20mg by tablet form and it was changed to injection to make sure that I was getting the full dose. Consultant told me that you lose some of the MTX if you have it in tablet form while your body breaks it down. They never know how much of the dose you are getting when it is in tablet form. With MTX being such a toxic drug even the tiniest bit extra will make a difference. I did feel a lot better on the injection but my liver didn't like it, long story, was off all drugs till liver settled down and I then ended up on 17.5mg, this was the beginning of me having to go on anti tnf's. Like I said, I didn't notice hair loss until I had been injecting it a few months.

My hairs always been my crowning glory and I have had several compliments from complete strangers over the years about my hair. The nurse did understand when I told her how much it was bothering me, but I felt stupid telling her thinking that the next person she see's may have uncontrolled RA and would do anything to stop the pain.

I hate washing my hair now, after I have washed it I end up with what I call a net curtain of hair on my hands, the same when I condition it and the same when I put mousse on. It's a lot quicker to dry it now, in some respects that's not bad, but oh dear I don't want to lose anymore.

I really don't think MTX is doing anything, I really believe it is just the Enbrel that's working. When I came off all my drugs when my liver function was high I was amazed how quickly I got bad. I had to stop my pain killers and just rely on paracetamols, I always thought that it was the painkillers that were keeping me going and not the RA drugs and I think that proved it. The consultant told me that I should of been alright for about 6 weeks with the build up of MTX and SLZ that I had in my system. I wasn't alright for even six days and had to take steroids to tide me over.

I was going to start reducing it after Christmas, but I have an assessment in Feb so I will wait till then.

Suzanne I already take 5mg of folic acid every day. I don't know if you can take anymore. From what I understand about Folic acid is that it reduces the strength of the MTX.

Paula x





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