DLA dilemma

[jack]

Well here goes I'm writing this on behalf of my wife who suffers from psoriatic arthritis, she has been prescribed methatrexate (mtx) but has many fears about taking it what with all the possible side affects hair loss, "sudden death", nausea etc. We looked into it on the internet yes i know you will make yourself more ill reading things, but here is the dilemma she has her appeal soon for dla as she was turned down even though she has not had a medical for it ? her welfare rights officer and her professor and OT have said she will probably fail her appeal if she refuses to take mtx, its horrible listening to my wife cry with the pain of this terrible illness but her phobia of taking this medication is making her worse, all her medical people who are helping my wife say take it it will make you better even friends who take it say its ok but makes you feel a little sick, what should we do ? Many of her friends have said with side affects like that they would not take it , my wife is 50 years old and has the disease in her hands, feet and knees and in constant pain would the panel refuse to award her DLA on the grounds she has refused to take this medication. many thanks for reading this and if anybody here is taking mtx your thoughts would be very much appreciated

[buster]

hi im on mtx as well and all i can say speaking from my own experience with it is go for it i have RA in all my joints from neck down my blood counts were off the scale and in 8 months the pain has subsided a lot the swelling has gone down and bloods down to nearer normal levels whilst i agree it doesnt work for everyone its the best (imo only)out there the sickness is helped with folic acid supplement and if mtx taken just before bed not half as bad as youre sleeping through the worst of it

[jack]

Many thanks buster she has an appointment next week with her consultant so I'm hoping we can sort this out, i think reading about mtx on the internet has made it worse for her we have been through a horrible run of bad luck and i think she thinks it will continue she has been giving folic acid also its just we don't know what to do for the best many thanks for your reply buster i hope you keep on improving this is a terrible painful illness good luck regards jack

[Benni]

I have been in the same situation as you & I completely understand your wife's reluctance to take MTX, I was the exact same. I have been on it for 6mths after my husband convinced me to give it a go on the basis I could always stop. So far it has done nothing for my arthritis & has left me feeling a lot worse. Granted it has helped my skin, but I can live with bad skin & certainly wouldn't take such a toxic drug for that.

When I applied for DLA I had a home medical & the doctor asked why wasn't I taking it I told him I was about to start. I have just sent off my renewal but whatever the outcome is I think I may give up the MTX as I hate it so much. But as far as the DLA are concerned we are in a no-win situation. I hear of people not getting DLA because they don't take it, then I hear of people not getting it renewed as they consider, if you're taking it, you're cured.

What DLA seems not to understand is that MTX is NOT a cure, it MAY help SOME people by slowing down the progression of the arthritis but it certainly is not a cure. I hope your wife can decide what's best for her, it's an awful predicament & there's no guarantee it will do any good - but it might.

[jack]

Thank you so much for your reply benni, im sorry that your medication is not working for you.my wife has her appointment on Friday with her consultant and she is panicking about it i think she is going to take it after that tho. my wife suffers from anxiety attacks also so this is not helping at all . my wife needs to attend her doctors on a regular basis so the taxi fares are hitting us hard that's why we were advised to claim DLA although we don't hold out much hope, what with this coalition governments attack on the disabled and cut backs but we will see how her appeal goes, these are very worrying times ahead for us but we have to push on,,,,, once again many thanks for your reply i'll post what happens after Friday many thanks
regards jack

[Benni]

Hi Jack....this is my 3rd attempt at giving a reply but I keep getting cut off so I'll make this quick!

Just want to say good luck on Friday. I appreciate why your wife is anxious, some doctors are really insensitive & just say here take these pills like their sweets. I also looked up the side effects & saw death, scared the life out of me. But I have researched it a lot since & I can say I have never come across any deaths! Infact I know there are many MTX has helped & many (like me) who just felt really ill, but who knows if my PA gets worse I may give it another go. Why doesn't your wife tell DLA that she needed time to think about taking such a serious drug (understandable) & has now decided that she will, whether she then decides to take it is up to her. Also perhaps she should give it a go in the understanding that she can stop it at anytime she wants, you never know she might be OK with it, but she willm be carefully watched whilst on it. As far as DLA goes I agree it is a worry & disabilities cost money. I stressed to them how I couldn't walk ANY distance without intense pain (which is true) & there's also all the fatigue, stiffness, headaches etc,etc. Anyway, just to wish you all the best.

[jack]

I've done the same benni (reading up on MTX) and was upset to see so many young children who suffer arthritis and are taking MTX god bless them, my wife read the replies and feels a little better about taking it thanks x well we will see how tomorrow goes then we have a fight on our hands for her DLA as we just cant cope with the cost of taxi fares back and forth to the doctors and other costs to her health many thanks again I'll keep you posted what happens take care jack

[Debbie]

Hi Jack

Technically you can be refused DLA if you refuse treatment that would improve your condition to the point of not needing DLA. This regulation is rarely used, in 20+ years as an adviser I've never known a case. Basically it is unlikely to improve your qives condition to the point of not qualifying for DLA; and in any case the effects of side effects have to be taken into account. It can't be known if it will help your wife, unless she tries it, and she can't be forced to do so. The tribunal have to consider how she was at the time she made the claim, they cannot take account of the possible benefits of a drug she is not taking. For them to do so is likely to be an error of law, and could possiblt be overturned. Seek advice, show the adviser my reply if you wish.

[jack]

Debbie thank you so much for your reply part of the problem was my wife was in denial about her arthritis for many months blaming it on a little weight gain and getting stiffening through lack of exercise and miss- diagnosis until her consultant showed her her x-rays and it showed up on blood tests etc. my wife also suffers with panic attacks and anxiety so this didn't help we have a very caring and great GP who understands my wife's fears over this drug but said he would make his wife take it if it was him her consultant and OT are also very understanding and warm people we have seen a big change for the worse in her condition with her fingers going swollen and misshaped her knees are very swollen and her feet were so bad they bled she has her good days but it is getting worse so i think tomorrow she will try to take it after speaking to her consultant Rheumatologist, I've got to tell you though I'm very worried about her medication also as i did the internet thing and read up on MTX i even took the printed page from a website that stated MTX side affects could result in sudden death and could cause cancer scary stuff her consultant immediately e-mailed the site and asked them to take it down as it was frightening people and was untrue? the other part is the DLA we cant cope at the moment with the cost of things and we are feeling the pinch as she needs taxis to get around as we don't own a car when she first went to her IB medical with atos she failed but won on appeal but the appeal process was a nightmare so much so that she had nosebleeds while she was being questioned so she is panicking again waiting for her appeal for DLA as again she was turned down this was her first time applying for it I'm sorry for going on and on but i must thank you and all the others for your replies it has helped allot once again thank you regards jack x

[jack]

Just an update my wife took her first dose about 15 mins ago so here's hoping everything's ok i just want to thank you all for your support her OT is going to write a letter in support of her DLA appeal (when we get a date) once again many thanks regards jack