being taken off meds and possibly loosing benefit

spud130699

Hi

I have had PA for a number of years now, although I do not suffer with psoriasis and it affects the majority of all my joints.

I have been quite well for a while now on the whole with a few random bouts.

The last time I saw the specialist she said that on my next visit she will take me off my sulfasalazine. This is worrying me quite abit as it has taken quite alot of different medications over the years to get my PA under control.

I have on occassions been away and forgoten my medications and within days I have been suffering again, once home and back on the meds the symptons go again, so I am very worried about my meds being stopped altogether.

Do you think that the specialist is right in stopping my meds and if so what should I do if my symptoms come back.

My own GP's are not very good in giving out the meds even though they have been prescribed by the specialist and I have had difficulties with them in the past as they state the meds are too expensive, they have only backed down after the specialist has sent them a not so nice letter.

I am also worried that when my meds are stopped I will loose my incapacity benefit which I have been on for around 7 yrs now. I went back to work about 3/4yrs ago and on the 3rd day I had to get my husband to come and fetch me as I could barely walk and couldnt drive my car, so again I am worried about loosing my benefit and being forced to go back to work as any standing or walking for prolonged periods will start another flare up.

Any help or advice would be really appreciated

dorcas

Hi Spud welcome to the forum

sorry you've got this worry about your meds and the prospect of being taken off sulpha. :roll:

It's completely baffling why the consultant would stop a med that is working and keeping your PA at bay.

I have PA too without the psoriasis... but on a concoction of various treatments that barely manage to keep arther under control so I know how I would feel if my rheummy decided to stop my meds!.

My advice would be to go prepared to your next consultant appointment... write down how you feel that being maintained on sulpha is important as you know, having experienced it that a reduction or withdrawal is likely to result in a flare of symptoms. Be assertive and hopefully she will listen to you.
Your GP doesn't sound sympathetic and it is appalling you had such a fight to have sulpha prescribed! maybe you could see a different doc?

The issue about Incapacity is different.... being on Incapacity Benefit (now changed to ESA for new applicants) isn't just based on what drugs you are taking but how your disability affects your capacity to work. Have you had a review of benefits recently?

Another thought..... if you're mobility has lessened and you need more help have you applied for DLA? it's a non- means tested benefit and could help you considerably with getting about.

Iris x

spud130699

Hi Iris

Thank you for your swift reply.

I did mention to the specialist at the time that I did not understand why I should be taken off the meds as they were clearly working, and her response was that they have done their job, so I should not need to stay on them, she would review the situation at my next appointment, stating as long as I had stayed in good health without bad bouts of PA the meds would be stopped.

The specialist in question does not have a good repution with either patients or the hospital staff which is clearly evident on every visit, she is certainly not to be messed with and does not take kindly to you questioning her decisions or to you asking questions, as far as I am aware there is no other specialist to see either.

I do not receive DLA, I applied for it when I was very bad some years ago and was declined, so never applied again and did not get the support from the gp. My last review was about 3/4 years ago, which I do not have to attend, just filled in the questionaire, having artha was classed in one of their old books, as being a disregarded illness requiring to attend the assessment, I think since they have changed to esa they may have ammend this clause.

Changing the GP is not really an option, there are 4 plus locums in our docs but they will not alter meds given by your named gp, they will see you but if you need anything they tell you to see your named gp. There is another practise in town but will not accept patients from our village as they say we are out of area.

I have always had a struggle with the doctors to get any help with my condition and an even bigger struggle to get medication, even when it has been suggested to me by others that it may hepl, there excuse is always the same, its too expensive, regardless where it works or not.

I find it really annoying, if I was a druggie or an alcoholic I'd be spoilt for choice, they wouldnt be able to do enough for me.

annebr

I can't advice about benefits, sorry.

But, surely the reason your PA is now under control is because of the meds? This is a sign that they have you on the right combination. Your consultant and Gp do not sound very helpful. Can you asked to be referred to another consultant?

Sorry, not much help.

Anne

dorcas

Hi spud

Even if you feel you cannot change GP you can ask to be referred to a different rheummatologist. How you are being treated and the fact that she has made herself so unapproachable is just shocking. :shock:

I don't know where you live but there is bound to be another hospital rheummy department elsewhere... even if it means you have to travel.

I do a round trip of 40miles to see my rheummy, by choice, so it may be worth you looking into.

Perhaps you should start keeping a daily diary of how your joints are...pain, stiffness, swelling, sleeping patterns. That might be helpful..as we don't always remember how we have been week to week and it may be more persuasive evidence than you just countering your consultant's opinion.
Also if you do have an OT assessment that might lend weight to the info you can take with you.

There will be other peeps around soon who may have better ideas than I've given but I will keep thinking and get back to you later if I have any brain waves

Iris x

speedalong

Hi Spud and welcome,

this sounds ludicrous - sadly there is no cure for arthritis and it is just a case of management - and at present yours sounds well managed. Could you/would you suggest to your consultant that you would rather gradually decrease your meds rather than just stop them? That way hopefully you would be able up it again quickly at the first sign of deterioration? Really though I think your best bet is to see a different rheummy.

Keep us posted.

Speedy

spud130699

Thank you all for your comments and replies.

I will try to see if I can get referred another specialist but dont really hold out much hope of this happening.

I take 4 sulfas, 2 in the morning and 2 at night, and have always been on this doseage, I also take, 4 codeine, 2 naproxin, omperzole, atenolol, and benzafluxade(?), and premarin, I am prone to an outbreak if I have no codeine for any length of time, so dont really see the point of any of my meds being stopped.

cthornley

Sounds like you need to see another specialist, it is your right as a patient of the NHS to get a 2nd opinion, there may be reluctance to sort this out for you but it is your right.
I've never heard of somebody just being taken off their meds, the usual course of action is to gradually lower the dose to nothing and watch progression closely as you reduce it.
The ideal situation is to reduce peoples meds to the lowest possible dosage and some people can eventually come off them but its a gradual process.
I have a very lucky friend who finally came of MTX this year to celebrations all round, but I don't expect this to happen any time soon to me. :roll:
The key thing is that the patient is a key person in making that decision....sounds like your not keen, so either the doc needs to do more to convince you or its not time.
Hope you get it sorted some time soon, it is worth persevering
Chrissie