I have been on 12.5mg methotrexate for 9/10yrs for smouldering Wegener's. Has anyone else been on this for a long time.

I have SOB but x ray on chest is clear and my hair is very thin now. Any comments would be very welcome. Thank you.

[John_Mills Volunteer]

Can I ask what you mean by smouldering Wegeners please...

[Hidden in reply to John_Mills]

Thanks John and Susan, - PatriciaAnn has described it exactly. Never exactly flaring badly, but smoldering away and never letting me forget it !

~~Addrienne

[PatriciaAnn]

Hi Adrienne

By smouldering do you mean what I call "grumbling". Never quite controlled but controlled enough with the correct dose of meds. I had "grumbling WG" for four years when I was taking CellCept. I haven't taken methotrexate but I do have Azathioprine. Since changing to Azathioprine I've felt much better, not brilliant, but better. My WG is trachea and nose and after 8 years I'm still SOB.

My hair thinned when I was on Cyclophosphamide but once on CellCept it gradually returned to normal. There are shampoos and conditioners you can buy for thinning hair - Nioxin is one and I think Redken do one.

Maybe what you need is to discuss this with your consultant to see if he/she feels that a change of medication (or even a different dose) might be appropriate.

Pat

[Hidden]

Hi Pat , Thank you so much for your very informative reply. Funnily enough my hair didn't thin when on cyclo' and did not when I first went onto methotrexate just this last 10th year it is just awful (thanks for the shampoo ideas). Because my inflammation markers have gone up, my consultant has stepped up the mxt but I am not having a good time so I think I am going to have that discussion with him soon, although he is against the ideal of changing the med. ! ).

May I ask you if you went onto cellcept after cyclo' because of organ rejection issues ? (if that is not too personal).

I would still like to hear from anyone who has been on methotrexate for any length of time = thanks.

Thank you again.

Adrienne

[annie330]

Hi Adrienne

Not sure if my experience can help but when I had a roud of cyclo I got very short of breath. It was looked at my my GP and hospital did x-ray etc but said everything was fine. It did pass but lasted a couple of months. When I started the warfarin I experienced quite a bit og hair loss but I didn't get an answer for the cause of this but hwne I was at the hospital for soem treatment I told them and they said that hair loss can be sign of a flare up for lupus.

Kind regards

Louise

[Hidden]

Hi Louise - thanks for you reply and hope you are doing well.

Best wishes,

Adrienne

[magcor]

Hi Adrienne, just join this group.

I have been on methotrexate for 10yrs now for cereabral vasulitis.

I attend and have my bloods checked regularly to my knowledge they are ok.

My consultant keeps reminding me of the side effects but, is reluctant to take me off them because I had a relapse even though I was on immurane (sp) and had been on that for 8 years before the 2nd relapse.

I haven't notice my hair thinning and no SOB

Hope you are feeling better soon