Psoriatic Arthritis chemotherapy and ATOS

[mr_mastiff]

My wife and a number of her female relatives all suffer from Psoriatic Arthritis. My wife and her cousin are both on a small dose of chemotherapy (Methotraxate) to try and preserve the joints etc. Her cousin is at the tribunal stage of the ESA process. Atos do not seem to recognise the use of chemotherapy in arthritis, when its been a known treatment for years. My wife as been on this treatment for two years and the side effects are not getting any better, unfortunately over recent months her arthritis as left her bed bound at times and unable to work etc. I fear that in the near future that she will have stop work completely. I was just wondering if any Gaggers out there have had any experience with this disease/treatment and how they presented it to ATOS. I have looked on a number of sites and there as been some some success with rheumatoid arthritis which uses the same treatment but nothing in relation to my wife's arthritis.

[borisbeaver]

I can sympathise with you. MTX can be debilitating. I was on it for a year and had all of the side effects, with the nausea being the worst. I'm on sulphasalazine now and it's not much butter side effect wise.

[mr_mastiff]

I can sympathise with you. MTX can be debilitating. I was on it for a year and had all of the side effects, with the nausea being the worst. I'm on sulphasalazine now and it's not much butter side effect wise.

 

Hi, Mr Beaver have you been through the ESA process. If so how did Atos handle your claim.

[borisbeaver]

I've not yet had the pleasure of ATOS yet. I did try for DLA but was rejected.

[wobbly]

I dont think they reguard methotrexate as chemo,even though it is.My wife cant take it as it cocks up her liver and bloods.She is on Entenercept injection weekly which has slowed down the progression of her rheumatoid ,saying that they tried her on about 6 DMARDS before and massive damage had been done before the Entenercept.She is about to be ATOSSED so we dont know how she will go on. I believe Entenercept can be used for Psoriatic Artheritis but you have to have been on at least 3 other DMARDS.Its very good but very expensive so takes a bit of a struggle to get on it.

[mr_mastiff]

Hi wobbly thanks for your kind reply, none of the consultants my wife as seen as mentioned Entenercept. Its a new one to me. Please wish your wife the best of luck with ATOS and let us know how she gets on .

 

Was your wife trained to give her own injections.

Edited September 5, 2013 by mr_mastiff
more to say

[wobbly]

Hi Mr Mastiff,yes they showed her how to do it ,its only a very tiny needle and you inject into thigh or belly,my wife alternates left thigh,right thigh etc.I have offered to do it for her but she wont let me,I have told her it wont hurt me at all!!!.

[mr_mastiff]

Wobbly, thanks for the info, Wife not good with needles but as an ex nurse I have given thousands, so it looks like i get the job when it comes.

[starman59]

Hi mr m I have RA and am on methotrexate and other drugs and have an appt with Atossers soon. I last had one 2 years ago and the "healthcare pro" reckoned I would recover in 6 months??? When I get there I am going to ask what he/she knows about RA and the therapies I am on. I would imagine he/she will know very little as lets face it the consultants work many years for their qualifications whereas the so called professionals know bugger all and just tick boxes. My other point is blood tests do not lie so if I have to I will show my metho book and see what the bod thinks to that. If your wife goes to see atos then tell them you want the interrogation recorded that way the HP cannot try and twist things to suit the DWP. As for her sister there is a doctor on the appeals panel with a judge so present everything to them and hopefully she will win. Good luck. Starman.

[Panthro]

I'm a rheumatology nurse specialist and today I completed 3 medical supports for ESA. They give you 5 working days to get the info back to them so had to stay late to type these myself as a dictated letter takes at least a week to be typed. All three of these patients had very different systemic rheumatic disease. The burden of ESA (and soon to come PIP) on these patients (and their specialists) is ridiculous. I fear there may come a time where I have to say "sorry, I can't help on this occasion" which is not why I became a nurse!

 

Re: OP. Sorry to hear of your wife's problems with her PsA (and treatment!). MTX is a good drug but like many DMARDs has side effects some find intolerable! I would not call it chemotherapy in the oncology sense as technically all drugs are 'chemotherapies' but it should be recognised that there are well known and common side effects (nausea, diarrhoea especially) of MTX. Interestingly you say her PsA has been getting worse over the past few months? Has this been looked at? She may need changes to treatment. Do you have a local CNS you/your wife could contact for advice?

 

My advice to any patients filling out the form or attending a medical is to make it your worst day and lose the proud stoic-ness! If you can only comb your hair 5 days out of 7 then you can't comb your hair! If you can't lift a box every day then you can't lift a box.

 

Best of luck!!

[wobbly]

You would think some of these so called HCPs who work for ATOSSERS got their qualifications off the internet for a fee.To say that you will recover from Rheumatoid artheritus in 6 months is a joke,RA is a progressive illness and having witnessed its effect on my wife the last19 years Ithink I am qualified to comment.When your wife tells you she wants to die takes some coping with,i say no more.

[mr_mastiff]

I'm a rheumatology nurse specialist and today I completed 3 medical supports for ESA. They give you 5 working days to get the info back to them so had to stay late to type these myself as a dictated letter takes at least a week to be typed. All three of these patients had very different systemic rheumatic disease. The burden of ESA (and soon to come PIP) on these patients (and their specialists) is ridiculous. I fear there may come a time where I have to say "sorry, I can't help on this occasion" which is not why I became a nurse!

 

Re: OP. Sorry to hear of your wife's problems with her PsA (and treatment!). MTX is a good drug but like many DMARDs has side effects some find intolerable! I would not call it chemotherapy in the oncology sense as technically all drugs are 'chemotherapies' but it should be recognised that there are well known and common side effects (nausea, diarrhoea especially) of MTX. Interestingly you say her PsA has been getting worse over the past few months? Has this been looked at? She may need changes to treatment. Do you have a local CNS you/your wife could contact for advice.

 

Best of luck!!

 

Thank you for your kind advice, she saw the consultant last week, There are a lot of other problems clinically and the picture requires a number of other tests before my wife can make an informed decision on change of Tx etc.

The support team CNS is brilliant and as an"old nurse" I recognise excellence when I see it.

For clarity I was trying to find more on ATOS,s attitude towards PsA because when my wife,s cousin was assessed the nurse openly stated that she had not heard of it. The assessment as since been found to be not fit for purpose. I am so pleased to hear that nurses like you are still willing to go the extra mile to help their patients.

Edited September 6, 2013 by mr_mastiff
clarity

[mr_mastiff]

Hi mr m I have RA and am on methotrexate and other drugs and have an appt with Atossers soon. I last had one 2 years ago and the "healthcare pro" reckoned I would recover in 6 months??? When I get there I am going to ask what he/she knows about RA and the therapies I am on. I would imagine he/she will know very little as lets face it the consultants work many years for their qualifications whereas the so called professionals know bugger all and just tick boxes. My other point is blood tests do not lie so if I have to I will show my metho book and see what the bod thinks to that. If your wife goes to see atos then tell them you want the interrogation recorded that way the HP cannot try and twist things to suit the DWP. As for her sister there is a doctor on the appeals panel with a judge so present everything to them and hopefully she will win. Good luck. Starman.

thank you for your kind words, ATOS do not seem to recognise what a chronic progressive disease is and the misery that lack of knowledge leads too!