Date: 03.08.2009
From: Kate
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Subject: RA - meds vs alternative therapy
Hi. I'm 20 and was diagnosed with RA a year ago. I was prescribed prednisoline and methotrexate (which made a lot of my hair fall out). After a few months it seemed I was in remission so I came off the meds (I just wanted a few months to be care free & be able to act my age!) in January this year. I can now feel my RA coming back but am reluctant to go back on the meds as I'm scared of the damage that they could do to me. Has anybody tried any alternative therapies or diet changes? If so, did anything help? Would appreciate some advice as I'm so confused right now. x
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Date: 03.08.2009
From: vicky
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Subject: Re: RA - meds vs alternative therapy
Hiya Kate, I got diagnoised with RA in jan, ive been unable to start on any medication due to having a conflicting condition. I have found the best thing for me is hot baths, hot feet spas and an afternoon nap have all helped me immensly. Im still in pain but i can do some mornal things! After a bath i can actually make a fist which is an achievement for me! The RA is currently worse in my wrists so im using heat packs it all helps!
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Date: 04.08.2009
From: Jill
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Subject: Re: RA - meds vs alternative therapy
Hi Kate I guess u need to weigh up things here, as the Meds help your pain, but they also help stop the degeneration of the joints...so by stopping them(and I understand Y u did) its kinda going to go against u, becos as u say, pain is coming back, sorrry to hear that, its terrible at any age, mine began when i was also in my twenties...now in (cough) LOl 40s.... But if I had had the chance many of you younger guys have today, I wldnt have been as bad now..... so please reconsider, I know there r side affects, but mb this time your hair wont fall out as much, if at all.... my side affects(im on Methtrexate and Enbrel) is i feel sick, but I now take them at night and that is better for me....im also very tired.....but U have to weigh up things, its a trade offf against say being carefree as u say, or lessening your disease.....at end of the day, U must need the MTX or they wld not have prescribed them for u, and also takes 3 months to get bk into your system......just an idea, mb when u begin them again, take a supplement, eat lot fruit and veg, exercisse gently....Plus THINK pOSITIVE.... let us know how u get on pls, as it helps others too
take care ok
Jill x
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Date: 04.08.2009
From: Lynne
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Subject: Re: RA - meds vs alternative therapy
Hi vicky .. Jill is absolutely right the meds stop the joints degenerating further down the line.if you don't get it under control. It is scarry at first reading the list of side effects, but what you may also consider is that they monitor your bloods regularly so that they can pick up any probs straight away.
Take care Big hugs
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Date: 04.08.2009
From: Kate
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Subject: Re: RA - meds vs alternative therapy
Hi everyone...thanks for your replies. Its really good to hear from people who understand what I'm going through. Not sure why I never thought to come on one of these forums before! I figured that the MTX would be the best option in the long run, just thought I'd see if anyone else tried other options. Obviously I would rather lose some hair & put up with other side effects than stand by while my joints get worse, I guess its a case of picking the lesser of two evils. I'm going to arrange to get back on the MTX and this time think of it as a blessing that I have the medication available to me, I know those who were diagnosed years ago weren't so lucky. Like Jill said I think its really important for us all to think positive! Take care, all of you x
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Date: 04.08.2009
From: Karen
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Subject: Re: RA - meds vs alternative therapy
Hi Kate, Im also in my twenties and on Methotrexate, cried for days before taken it as I want to have the life of a twenty something but I can't. Ive been given the number of someone from a friend who apparently sells a " formula liquid" that has been known to help arthritis sufferers as much as this appeals to me and I too have thought about not taking any medication at all, Im with the others on this one, need to think ahead and the likes of mtx has been tried and tested and proven to reduce long term damage which is my fear. P.S If your hair loss is that bad then tell them you want put on another, I would x
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Date: 05.08.2009
From: Elaine
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Subject: Re: RA - meds vs alternative therapy
Hi Kate
Do you take Folic Acid?
I have a friend who was recommended, by her doctor to take Folic Acid whilst on MTX. It reduced her side effects including the hair loss.
Might be worth asking your GP.
I have found this link for you: http://arthritis.about.com/od/arthqa/f/folicacidmtx.htm
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Date: 06.08.2009
From: Kate
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Subject: Re: RA - meds vs alternative therapy
I definitely know how you feel Karen, I'm sure getting the diagnosis is horrible for all ages but it didn't help for me being at Uni and surrounded by people who were completely care free. Hi Elaine, thanks for the link.
I was prescribed Folic Acid to go with the MTX, but I'm quite forgetful so perhaps that was the reason my hair still fell out. If it starts to happen again I'll ask my consultant if he thinks I should up my dose of FA. Right now I just want to get myself back on the MTX asap, whatever the side effects I'll have to face them sooner or later. I'm adjusting my diet and trying to be healthier at the moment, want my body to be as healthy as it can be with RA! x
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Date: 06.08.2009
From: val h
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Subject: Re: RA - meds vs alternative therapy
thats the spirit kate do what u can 4 your body wether it is diet exercise or meds u need to make the most of what is on offer keep your joints as healthy as posible good luck although have a feeling u will b ok u have a great attitude and will cope with what is thrown at u
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Date: 06.08.2009
From: Karen
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Subject: Re: RA - meds vs alternative therapy
Kate, how badly did you hair fall out? Ive just moved onto mtx, came out the bath earlier and noticed it was covered in my hair :( freaked out and my little brother had to come and came me down...wee soul, by no means were there clumps of hair but definately an amount that made me uneasy. As for the health side, im doing the same, cutting out sugar and ive really noticed the difference, those blue wkds werent doing me any good haha. How long did you take it for? x
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Date: 07.08.2009
From: Kate
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Subject: Re: RA - meds vs alternative therapy
Very sweet of you to say that Val! The healthy eating is helped by the fact that I've lost my appetite since my symptoms returned, suddenly I'd rather eat a nice salad than a heavy meal. Hi Karen - so sorry to hear about your hair...I know its hard not to freak out about it! I noticed what seemed to me a lot of hair falling out - not really in clumps but it just came out easily over the day, mainly when I washed it or brushed it. Are you taking Folic acid too? I was only on MTX for just over 2 months so perhaps it wears off once your body gets used to it. x
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Date: 07.08.2009
From: Karen
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Subject: Re: RA - meds vs alternative therapy
Yeah taking folic acid, my pal sent me nioxin hair products(prevents hair loss) so going to use that. Och I think you have been a wee bit hasty coming off them, you wouldn't have even reached your dosage by 2 months did you? Get back on them and let me know how you get on x
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Date: 07.08.2009
From: Kate
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Subject: Re: RA - meds vs alternative therapy
I hope your hair products work, let me know how it goes! I know I came off the MTX before they had chance to work properly, I only did because I was in remission and I hoped it would last longer. With my RA everything happened so suddenly that I felt quite overwhelmed, so it was nice to be able to do all of the things I love again, even if it was only for a few months. x
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Date: 09.08.2009
From: Lynne
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Subject: Re: RA - meds vs alternative therapy
Hi Kate some time ago I was on MTX my hair started to go thin so my rheumy stopped it and put me on anti TNF injections. You could ask your rheumy about then they have less side effects than mtx. You will probably find your rheumy reluctant to prescribe them for you because thet are expensive £10000 a year. But they are really good. It pays to be persistant and firm with your rheumy otherwise you don't always get the treatment you need. It may help if you take someone with youvto ask the questions as it's not always easy to do when your in pain. Good luck and take care
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