sorry i've not been about

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  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Nothing worse than a rastafarian bikini area! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • marion1952
    marion1952 Member Posts: 963
    edited 30. Nov -1, 00:00
    Oh DD - the mind boggles!

    Marion
  • frogmorton
    frogmorton Member Posts: 30,086
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    Nothing worse than a rastafarian bikini area! DD

    :oops: :oops: :oops: a045.gif
  • janie68
    janie68 Member Posts: 1,186
    edited 30. Nov -1, 00:00
    You can get swimming costumes that are for the shall we say fuller figure. They have little skirts on them which hide more. Don't know where you get them though. You could probably get them in smaller sizes too. Try tinternet to search

    Janie
  • suzster
    suzster Member Posts: 1,328
    edited 30. Nov -1, 00:00
    lol dd, rasta bikini area, that would keep the attention away from my flobbly bits!!!!!!!
    i worry about the scar on my hip to, it is 33cm long and my thigh is, erm, a bit uneven!!
    angel, where did you get your wig?
    i've looked online but cannot find many nice ones.
    i spoke to the rheumy nurse today, not my usual one who is lovely, it was a different one. she kept saying it's very unusual to have your hair fall out on leflunamide, she kept saying had i done anything with it that could of coursed it to fall out? maybe something i'd forgotten about?!
    i felt like saying "oh yes i shaved it off last week, oop's forgot about that!!
    oh well she's going to speak to my rheumatologist in the morning and ring me back then.
    joy!!!
    sue
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Why not wear a long beach-type tunic over your swimsuit? Or tie a sarong around your waist, anything along those lines would work. Theatrical costumiers would be a good source for wigs, perhaps. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Morning suzster, I hope things are a little brighter today. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • frogmorton
    frogmorton Member Posts: 30,086
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    Why not wear a long beach-type tunic over your swimsuit? Or tie a sarong around your waist, anything along those lines would work. Theatrical costumiers would be a good source for wigs, perhaps. DD

    The sarong Idea would eliminate the need to shave your bits too :wink:

    Love

    Toni xx

    Glad the rheumy nurse is taking it seriously Sue :)
  • suzster
    suzster Member Posts: 1,328
    edited 30. Nov -1, 00:00
    just thought i'd update.
    the nurse spoke to my rhuemy who said she didn't think it was the leflunamide and it was more likely stress related!
    so i have to carry on taking the higher dose of leflunamide, if my hair continues to fall out then i can contact the nurse again but my rhuemy is away next week so she can't do anything for a while!
    so i just have to wait and see, not very helpful really!
    sue
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hi suzster, I've been wondering how things are with you. I was on leflunomide for a while and suffered from paralysing headaches as a side effect. I don't think I was on it for long enough for my hair to be affected. Hair was affected when I was on cyclosporin: I turned into a blonde weirwolf, with hair growing everywhere - backs of my hands, on my face, upper arms and upper legs, stomach and breasts. Not nice. When I came off that it all went away, which was a relief!

    These drugs are powerful: they are used in chemo treatments - admittedly at much higher doses, but if one is susceptible to side effects, smaller doses will affect one. You could be in a small. vicious circle here: your hair begins to thin, you continue with the lef but stress about the thinnning kicks in (which is completely understandable) and so it goes on. I suppose the more important question is: is it helping your arthritis? If you are feeling the benefit of the drug then that has to be good thing. How long have you been on it? What else do you take? Has the arthritis improved at all? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -1, 00:00
    Hi Sue -

    I just looked up leflunomide in the bnf and alopecia IS LISTED as a side effect - ie hair loss. So I think the rheumy nurse needs to check her facts! I would ring the dept again and hopefully you will speak to someone better informed - but if not get her to check the bnf!!

    I can recommend sarongs - great invention!!

    Speedy
    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • frogmorton
    frogmorton Member Posts: 30,086
    edited 30. Nov -1, 00:00
    Hi Sue

    well-done for starting the ball rolling but Sue if Speedy is right (and I have a lot of faith in our speedy :wink: ) then it is quite possibel :shock:

    Only one thing Speedy - a sarong wouldnt be much good in the local munucipal pool :wink:

    Keep on at em Sue

    Love

    Toni xx
  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -1, 00:00
    Hi Toni,
    a towelling dressing gown on the side is quite nice though and you are half dry by the time you get to the changing rooms and not shivering at all!!

    Keep us updated, Suzi.

    Speedy
    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • frogmorton
    frogmorton Member Posts: 30,086
    edited 30. Nov -1, 00:00
    Might do that meself Speedy :wink:

    Good thinking.

    Sue goes with small person and they need drying before you dry yourself dont they and you get SO cold :roll:

    Love

    Toni xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Now isn't that a lovely greeting from P&F? You see, you are missed when you don't post!

    As hair loss is a documented side-effect of leflunamide (thanks speedy, I didn't know that) then I guess there is not a lot one can do - and I know how demoralising that is. Head covering may be the answer here - scarves and hats can hide the thinner parts - and you don't have to look like the queen, there are ways of tying a scarf so it looks good! I sincerely hope you can find a solution suzster: you don't need this extra stress, do you? Thinking of you, DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Sue,

    Its nice to see you again :D Sorry you are having a rough time though... I understand to a degree cus since I been on mtx mine has thinned and comes out by the handful every time i wash or comb it.......

    Its more obvious to me than it is to other people..... I see gaps and bits of scalp on the top in the sun and well...... Go easy on it with dyes and treat it gently as well. i guess it could be allapesier? Flower I think the nurse is wrong and maybe you could see a doctor and try and find out if it drug or stress? I know its hard but try not to worry.... and leaving you a ((( ))) and use the sarong! They cover so much and look good as well. Luv Cris xx
  • suzster
    suzster Member Posts: 1,328
    edited 30. Nov -1, 00:00
    the nurse said hair loss on mtx and leflunamide is rare, but when i was on mtx i had loss to, so it can't be that rare!!!
    thank you all for your kind replies, it's good to have your support.
    i kow that hair loss is on my patient info sheet to, surely they wouldn't put it on there if it wasn't true?!!!
    my rheumy, who is normally very understanding is away this week, i think her concern is the higher dose of leflunamide and the steroids have really improved my symptoms, i'm better than i have been in years! i guess the steroids are a big factor in improving things as the improvements started not long after starting them, although i did have some hefty steroid injections, local anaesthetics and long acting painkillers put in my shoulders to, they where the worst joints at the time!

    so yes i'm feeling much less pain and stiffness, but i keep thinking that it's great to feel better but hair loss is not something i want to live with. what's the point of being more able if i don't want to go out because i'm self conscious? but then, i think how much better i feel again, it's a vicious circle really isn't it?
    sue
  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -1, 00:00
    It sounds a massive dilemma Sue, you definitely need to meet with rheumy to talk it all through. Hopefully they will fit you in quickly once the rheumy is back from hols.

    Speedy
    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Buy a wig. The most important thing, surely, is that you are feeling better. That is a good thing. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • joyful164
    joyful164 Member Posts: 2,401
    edited 30. Nov -1, 00:00
    suzster wrote:
    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!
    sue x

    Wondered where you had gone Sue. So sorry you are having this worry. The more you worry about it the worse it will get.
    Perhaps there are other reasons to consider, alopesha for instance. Have you had a lot of stress for any reason, apart from the RA, pain, medications.

    I lost both my parents in 1983 very close together and my marriage failed. In the end my hair just fell out like yours
    I then started taking Kelp tablets. Seaweed is very good for hair loss. Try all the products you can, I use to have really strong thick blond hair, it was the sort of hair that was a hairdressers dream.
    Now, it is thin, wispy and now and again, another lot of hairs escape. I still have my one Kelp tablet a day, but sometimes I have to stop them for a few days. They do help.
    Another reason my hair is thinning I suppose is because I am getting older.
    Joy

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