sorry i've not been about

suzster

i know it's been a long time but i have been really struggling.
my RA was totally uncontrolled for about 6 months so i was put on steroids and my leflunamide has been upped to 20mg daily and now although thank goodness the RA is under control at last but the side effects are making my life hard. the upset tummy i can cope with, just but my hair is falling out in clumps and now my formally thick wavy hair is halved, it is thinning rapidly and because it was the one part of me i truly loved, from dying it to scrunching it, it was my crowning glory!!!! now i feel so sad and i don't know what to do.
does anyone know of any good ways to improve this? please!
sue

barbara12

Awww welcome back Sue
I am so sorry you have been having a bad time, my hair is thinning badly , not with drugs but age, my hairdresser wont colour it just yet, she says she will wait till it settles down :roll:
Sue I do hope you feel better soon, dont go away again, stay and talk to us lot
You take care of yourself
Love
Barbara xx

suzster

thank you barbara, it had been a really tough few months but i am thankful the pain has settled.
my friends keep saying i look great, it looks like i've last weight ect, but i know that they are trying to be nice, i look in the mirror and see my round face caused by steroids and my thinning hair and i feel rotten.
still, i know i'm not alone at least!
sue

ironic

Hi Sue,
I'm really sorry you are having such a bad time of it. Good that you are feeling better in yourself. You must have been really low after six months of flares.

I can understand how sad you must be to watch your hair thin so much. I real downer for you. I have thick hair so I know where you are coming from.
When do you go back for your appt? They may be able to suggest something to help. I wonder if it will settle down in time? Is it worth having a word with your rhumy nurse?

Sorry not much help, but wishing you well.
Lv, Ix

dorcas

Hi Sue,

It' so nice to see you back on the forum...but I'm so sorry to hear you've been going through such a rotten time and that the meds are affecting your lovely hair.....

I know that Folic Acid tabs help hairloss for Mtx peeps but don't know if it would apply to your meds.....taking other meds isn't something we can mess about with anyway without checking with a doc. :roll:

Have you asked your rheummy, doc or pharmacist about the meds causing hair loss? maybe they could give you advice about what you could take that might help...

or you could post a question on the helpline?

sorry not much use :oops:

please stay posting so we can support you through this.

(((hugs)))

Iris x

annie_mial

Sue, sorry to hear you are going through this.........I would be just as down in a similar situation.

If you are going to ask the nurse about folic acid, you could also ask about Biotin.......it's a supplement which is widely prescribed in high doses in America for this particular problem and is apparently said to help immensely.

I don't know any more than that as I haven't needed to look more closely into it, but it might be one route to go down.

Annie

Wonkylegs

HI Sue,

so sorry to hear that you are having such problems with your hair ..... having had similar problems with mine I can understand how frustrating it is for you. I currently take 17.5mg injected MTX weekly & 10mg Leflunomide daily. My hair problems were worst on the high MTX alone, but I still have thinner hair than I used to have.

I would echo the suggestions already given about talking to the pharmacist and/or rheumatology nurse, as they will have dealt with others having this side effect.

I would also suggest that you consult a friendly hairdresser who could advise you of the best way to look after your hair. When I was on the higher doses of MTX (before the Leflunomide was added) I used to lose a lot of hair each time I brushed it, even more noticeable because I had very long hair. This really got me down, and as a result I didn't look after my hair very well.

The advice I was given was to wash it with a really good shampoo, use conditioner every time I washed it, and to limit how much heat I used (I used to air dry rather than blow dry, and limited my use of the straighteners to once a week) SHe also advised me to use a heat protector when I did use the straighteners, and not to tie my hair back if at all possible, so that I didn't stress the hair roots.

all these things certainly helped, along with the folic Acid that I take every day except MTX day. (this often varies & can be adjusted by your consultant if necessary - apparently I could have taken up to double the dose, but I chose not to as things were improving)

the other thing that really helped was having my hair cut into a style that was shorter, meaning the hair was healthier and not as weighty on the roots. Mow , although still not as thick as it once was (that is not all bad either!) my hair is in much better condition and I lose a lot less than I did once.

not sure how helpful this has been, but just wanted you to know that there are things you can do to help, and that it won't necessarily always be this way.

sending hugs (((()))))
WOnky

marion1952

Hi Sue

I wondered why you had not been posting for a while - sorry to hear that your RA has been so difficult to control, but glad that things are a bit more stable for you now.

As others peeps have said, I wonder if there is anything that will counteract the thinning hair? I would really raise this with your rheumatologist or the rheumy nurse if you have one..

I had some hair thinning at first with methotrexate, but I have thick hair, so no-one noticed it except myself and my hairdresser.. and it has gone back to normal thickness again now.

Please keep posting and let us know how things go for you.

Marion x

dreamdaisy

Oh suzster, I am so sorry. How miserable. Supplements are a route to consider, I know that Healthspan do a good hair and nails one, my mum takes it and her hair has improved (she's 87, unlike me who just feels 87!), and the advice about not blow-drying, conditioning and less stress on the hair is all good. Meth and lef are chemo drugs, admittedly not used in such high doses with us, but they can result in hairloss and the emotional impact of that for anyone is not to be scorned. This is meant as a kind suggestion but I cannot do it tactfully so here goes! Would it be worth investing in wig so that when you go out you can do so in some style and with confidence?

Please keep in touch with us - if we don't know how you are then we cannot support you. The tendency here seems to me to be that when people disappear it's because it's all going well - but that isn't necessarily so. Take care, let us know how you are from time to time, or even everyday - we care. DD

frogmorton

Hi Sue

So very gladf to see you. I was wondering where you were. It's coming up summer hols and i was remembering you last year...

I have no useful advice but would like to let you know that I feel for you very much - I am not vain either but our hair is very much part of our identity and maybe our womanhood too.

I am so sorry

Dont dissapear again Sue - we missed you.


Love

Toni xx

haagan

hi Sue
Sorry you have been having a bad time with arthur and now losing your hair. I feel for you ,I'm just back after a bad period with arthur. I think my hair is best feature and was devasted when it started to fall out in great clumps when I was on 15mgs Metx. Because I have thick hair probably nobody but me was aware of it. That and the fact I was suffering severe nausea as well led my consultant to move to sulfa, still had nausea but the hair loss stopped. I'm now on 20mg Left so far so good. You need to ask the Consultant if there is other medication that will work but without the hair loss. Hope it stops soon and you feel better. Take care Fay

speedalong

Hi Sue,

sounds like you have been having a really rough time.

Definitely get the rheumy to advise/make changes to your meds regime to help with the hair loss. From what Marion says, it can grow back with med changes and/or suppliments.

Keep reading and posting it is better for you than bottling it up.

Speedy

woodbon

Hello, I was wondering where you'd gone. I'm glad you'r feeling better but its awful for you to loose your hair. I hope it settles down soon and you can get the hairdresser to see what she can do. I think most woman are sensitive about their hair, I know I can never get mine to go as nicely as the hairdresser does!

Does the hospital have anyone who specialises in this type of problem, I'm sure I saw something on TV about a model who lost her hair, and it showed some treatments. Its worth asking next time you go. Maybe, as you've not been well, you are well, you'r noticing your hair more than anyone else would, just noticing the how much you've lost and not how much you've got left? It's the sort of thing I do :roll:
Nice to hear from you again, lots of love, Sue xxx

suzster

thank you everyone.
up until about 3 days ago my hair was fine, but it is very noticeable, it is half it's normal thickness and alot of the length has gone. it's about 3 inches shorter, so i guess the longer hair fell 1st, but in 3 days it has literally fallen out in big clumps and it is very thin now.
spoke to the pharmacist earlier who said if my rheumny nurse doesn't ring in the next 24hrs i should see my gp. so i'll try to get an appointment first thing tomorrow as if it carries on i will have no hair left, it's that bad!
i've been looking at clip in extensions today as it might tide me over and make me feel more confident, with my moon face short hair would make me feel very conscious.
i was talking to the pharmacist and it seems so unfair we have to choose between feeling less pain and having to cope with awful side effects or have pain. not good.
thanks again for your suport, i'm terrible for hiding away when things are bad, but i'll try ot to in the future.
it'll take me a while to catch up with all the postings, especaily as summer holidays start at the end of this week, so sorry if it takes me a while!
sue x

frogmorton

Just glad to have you back Sue.

Not right I ahve to agree the choice between agony and loosing one's hair :x

Makes me very cross

Love

Toni xx

lindalegs

Hi Sue,

It's good to see you again but sorry to hear you've had problems.

I would leave dying your hair till it settles down. When we don't feel well it's reflected in our hair and it often looks lifeless, flat and dull. With it coming out in clumps you need to be gentle with it, lots of conditioner when washing and use a gentle comb or brush with little bobbles on the end when you do brush it. Tease tangles out very carefully and have the hairdryer on cool when/if you blow dry.

I may have repeated some of the suggestions above but just trying to get down my thoughts before I have a senior moment

I would think it will come back but to help with your confidence - and this is a serious suggestion - have you looked at hats. You can get some natty styles to suit your personality (I'm thinking that you do like to dye your hair in wonderful pinks etc.) and make a fashion statement.

Luv Legs

suzster

hi legs, one problem, i have never found a hat that looks nice! i know there are lots but i seem to look a bit 'special' in all of them!
i have had to resort to a sun cap with all the hot weather and i look like i should work in a fast food restaurant! but hey it keeps me cool!!
sue x

frogmorton

That's wise Sue - you dont want to burn your scalp as well :shock:

I know what you mean about looking a bit 'special' hats do taht to me too - mind you in the winter I wear my wooly one out anyway and knickers to 'em!!!

I know you can buy a spray can't you taht looks like hair as it 'colours' the scalp to match your haiot colour??

I am cross for you.

Love

Toni xx

tkachev

I have noticed youve not been about and I am sorry to read it was because you were feeling so ill. Hair loss is a side effect of MTX but not everyone suffers from it but it is one I dreaded too. I do hope it will be a temporary problem for you.
Weight gain has been my problem and has made me feel very critical about myself. It can be very demoralising.


Elizabeth

dreamdaisy

This sounds trite but I think there is some truth in it: what really bothers us is rarely noticed by others, and that's simply because they are too pre-occupied by their appearance. They will be worrying about their spots/weight gain/bad hair day/the tomato ketchup they dropped down their front at lunch/the sagging hem of their skirt etc etc too much to notice you. Generally speaking, people are not very observant. If anyone does pass a rude remark, say you're having chemo - yes, a small lie (but based on truth), and follow that with a muttered comment about how you cannot understand the insensitvity of some people. That will shut them up. DD

suzster

weight gain was almost instant with me, sadly, i wanted to start taking sarah swimming during the summer holidays but now i don't think i will be able to wear a swimming costume in public!
sue

dreamdaisy

No-one will be bothered. People will notice if you act in a self-concious way. If you don't, they won't. Self-confidence is the key - it is an act of pretence for many people, go for the Oscar in it! Doing things with your daughter is the important element here. DD

angel1

It is lovely to hear from you Sue, I too have wondered how you were. I have missed hearing about Sarah and Ellie. How are they?

I find it particularly sad about your hair loss, because you always had such fun with your hair. It made me smile when you went from one great colour to another. I am sure that, in this day of a treatment for almost everything, you will find something to help.

I haven`t suffered hair loss, but, because of Arthur in my shoulders, I bought a wig, to wear occasionally. The first time I wore it, I had lunch with my two sons, and one of my D`s in L, the people who know me better than anyone. Not one of them had a clue, it really is that good. There are some fabulous ones out there. Perhaps, you could take a look.

My love to you, and the Misses Sarah and Ellie!..........Ange.

woodbon

Hi, I'm sorry, it must be distressing. I hope that the doctor can help you if you need to go. Maybe a change of drug, to something that suits you better will be the answer. There are loads of drugs that do the same job as each other and some suit different people. I'm not knowlegable in this area, but just want to say I'm thinking of you and wish you well, lots of love, Sue xxxx (((((())))))

lindalegs

suzster wrote:

weight gain ..............i don't think i will be able to wear a swimming costume in public!
sue

Hi again Sue,

Have you thought about wearing a baggy t-shirt over your swimming costume, it might help you to feel less self conscious and you and Ellie will both benefit from swimming?

Luv Legs

frogmorton

dreamdaisy wrote:

No-one will be bothered. People will notice if you act in a self-concious way. If you don't, they won't. Self-confidence is the key - it is an act of pretence for many people, go for the Oscar in it! Doing things with your daughter is the important element here. DD

She's right Sue - they are so unlikley to notice being to worried about the fact that they have - varicous veins or haven't shaved their bikini area (me :oops: ) etc...